View Full Version : Help! Scared of losing my Mum!
I'm panicking over losing my Mum.
I am not in a good place right now and she keeps falling over and it is killing me emotionally. Every time she falls, I think the worst and then she survives and then it happens again and then I think the worst and then I start shaking and crying and never seem to be calm when this happens and it makes me worse so I become light-headed.
I can't seem to control these thoughts and it affects my sleep and I worry constantly and it makes me more ill. :weep:
I'm truly sorry to hear this. I'm personally dealing with the reality of losing my parents as well. My father's wife just passed and he's not in the best of health. My mother is in the same boat plus dementia (and I just found out she was just taken to the hospital today! She'll be Ok... severe UTI but still). They're both in assisted living homes but the reality is apparent and I understand the feelings you're experiencing.
Add to that I'm far away and can't be there at a drop of a hat nor can I help financially. My sister has taken on 100% of the responsibilities and it's taking it's toll on her (she's an anxiety sufferer).
What helps me the most is accepting the situation in that I can't change fate and life. Realistically with both being in their 80's and not well, I know their time is limited. All I can do is make sure I speak to them often, visit when I can, make sure I tell them I love them and try to make the best of a truly difficult situation.
Is your mom in an assisted living situation or can you have a nurse/aid check in or help her?
Positive thoughts
Since posting this Thread, my Mum is now in hospital.
The GP checked her over and on the results sent over what you call a 'Stars Team'.
They assessed her and was not happy with her ability to move around the house, so called an ambulance.
So when I arrived for the 3rd day running and after battling a half an hour journey, there was two guys from the 'Stars Team, two more from A & E and two neighbours.
I couldn't stop shaking and shivering inside and at one point thought that I was going to end up in the ambulance with my Mum.
Well, I survived it, coped and Mum is being checked out.
I know she won't want Carers, she hates strangers and has trust issues, so we will have to cross that bridge when we come to it.
I currently do everything for her, but due to my relapse can not stay over with her, but if she can't move by herself, I would have difficulties with that anyway.
It's so hard to deal with; the practicalities, the emotions, the guilt, the worry of loss.
But you are right Fishmanpa, you can't change fate or life.
Sending positive thoughts and prayers for peace.... :hugs:
Positive thoughts
MyNameIsTerry
12-03-16, 07:25
I'm sorry to hear you've had a very difficult night and your mum has been sent to hospital. :hugs::flowers:
They tend to play very safe with the elderly. She will be getting good care in A&E or acute admissions or wherever they send them to. When my mum went in with pneumonia they were spot on with everything, a stark contrast to the messy general wards.
It's good that she has got neighbours who care. It must be quite a comfort knowing they are there if you need them.
I guess we have to just learn to accept the changes in stages of life, no matter how hard, since they will come to us all. It's upsetting to see your parents getting old though and all the fragility that comes with it. All you can do is your best, which I know you will always do.
I'm sorry to hear about your Mum but maybe now is the time for a full assessment of her needs? At least you know she is safe in hospital and not a liability in her own house. I do hope the hospital stay will answer all the questions you have about her physical health and maybe she will have to accept help from others now?
After a heavy night, this morning has started badly. I waited 20 minutes to get through to A & E and when someone answered, they told me that they could not give any information over the phone????? Not to be beaten, I asked outright, "Has she had a stroke?", to which he replied, "well, she is not in the stroke unit, so probably not".
She's been stuck in a pod adjacent to A & E all night, and probably been given nothing to eat and little to drink and no sleep. (I've been here before, so I would put money on it), and they told me that they are intending to keep her in and allocate her to a ward.
which ward? I don't know. I've told Mr C that I want to go up there and see her, but it means bundling Mr C's Mum in the car and taking her with us.
To top it all, some Roof builders turned up at 8am this morning and when I opened the bedroom curtains, I was faced with a builder's bum. let alone the peace and tranquillity we need before we start what looks another busy and stressful day!
MyNameIsTerry
12-03-16, 10:26
That's the last thing you want to be greeted with...a full moon :winks:
Hospitals can be a right pain like this. My dad's friend had the same yesterday with his wife. He rang up and they didn't know what ward she was in. They told him high dependency and no visitors so you can imagine how shocked he was since she went in for treatment and it wasn't critical to then be told she was on a critical ward! It took him questioning them to determine she wasn't actually in a critical state!
It's probably best you go up and sort it out. It's a left hand, right hand, situation with these places.
At least it looks like she hasn't had a stroke which is very good news. The A&E people would have had a good idea if she had and they said no...and I would trust their opinion over a GP any day.
It was more a half moon Terry :blush:
Yes, I don't think she is critical, I think it was a case of out of A + E and waiting for a bed for tests. I have to phone back and get the details later.
Mr C and I are going to try and relax this morning and get some well earned rest, poor Mr C nearly fainted last night from lack of food, so we made a joke to the A & E guys that we should ALL bundle in to the back of the ambulance.
Thanks Pulisa, I can't do this all on my own anymore. My Mum is quite high maintenance now and maybe something good will come out of something bad??? x
---------- Post added at 10:59 ---------- Previous post was at 10:53 ----------
Sorry, did I mention she was in HDU?
MyNameIsTerry
12-03-16, 11:13
I take it from your unhappy reaction it wasn't the kind of builder you get on a Pepsi commercial? :winks:
My mum said they sometimes put people in HDU until they are sure when they are a risk like the elderly, it's where my mum went in via the non emergency ambulance. She said they were excellent it's just that you do have to put up with the noise of the other cases they are dealing with. Anything truly serious, they would have been calling you to go up so that's always a good sign when you are chasing them.
I hope she is feeling better soon. They may keep her just to keep an eye on her for a few days. These places like to ensure all areas are returned to normal before they let the elderly out, they are very careful with them.
I don't blame MrC, when you have a shock and blood sugar is low it can bow, you over. Did they say 'sorry love, one phone call, one ambulance'?
That's what is panicking me, they didn't take my number and my old number is out of action due to my toilet escapade. My Mum can't remember any numbers, so how were they going to contact me?????
MyNameIsTerry
12-03-16, 11:33
But when you spoke to someone, perhaps if there was an urgent need to contact you when they didn't have the details there would have at least been a note on her record? Something that would flash up to say you were urgently needed? That's a basic function in even a GP surgery when you go to collect a prescription and the doctor needs to talk to you so I'm sure somewhere like A&E would have functions like that, they must have scenarios where they need to make urgent contact with people when they have been brought in by ambulance but they couldn't get through even when they called.
I think you will feel better about this once you have had proper contact but try not to jump to conclusions, as hard as it can be at a time like this.
Hopefully she'll be moved to a general medical assessment ward once a bed becomes available? Because it's the weekend things won't be running routinely so be prepared for some hassle as regards locating her..
Get some rest this morning and your strength back and go and see her this afternoon? It's the only way to find out what is happening. You certainly would have been contacted in an emergency-I'm sure the paramedics will have got your contact details but maybe you don't remember giving them as things were such a blur? They certainly wouldn't have taken her to hospital without getting contact details for you-it's "procedure" xx
It's hard to relax Pulisa, but we are trying.
Our intentions are to go up this afternoon.
Just caught sight of my face and it looks as if all the colour has been drained from it!
The hospital have just phoned on my old number which has been set up in an old phone for incoming calls only. (I had a feeling this might happen, so I have left it open and switched on). They have now transferred her to a Ward, but no other information given about what is wrong or what they are going to do. Hopefully I will get that when I am up there?
Mr C and I are so exhausted and even though she is in hospital it had created even more work for us; this is worse than before! We now have limited times we can visit which does not fit in with Mr C's Mum's needs.
I had a glass of wine last night, so I think another may be on the horizon later.
On the way home, we stopped off for a drink in a local hotel and the whole of the Welsh Rugby Team were there, so at least I had a lot of eye candy to go with the glass of red. :winks: Medicinal purposes, of course.
Thanks for everyone's support, it helps me to know I have support when I need it. :hugs:
---------- Post added at 12:40 ---------- Previous post was at 12:33 ----------
I've just investigated the Ward she has been put in and it is an Orthopaedic Recovery Ward, so I am relieved about that. :)
That sounds painful but not as serious as initially feared.. Getting someone in to sit with Mr C's Mum at short notice will be very tricky though. Is there anyone who could take you to the hospital so that Mr C could stay with his Mum? Forgive me if this is a stupid suggestion. Or a taxi?
I was just checking my Mum was in the Ward and they had lost her!!!!
After spending ages going from one Department and another, they found her.
Apparently she is exhausted and fast asleep, so me and Mr C have decided to go up tomorrow instead; especially as the visiting hours are all day. This will give us a chance to rest as well as Mr C has found it quite hard going and nearly fainted himself last night. I will worry about her, but I will worry tomorrow, next week and next month as well. We can organise properly for the visit tomorrow and relax a bit today.
Carnation, so sorry for what you are going through. sending you great big :bighug1::bighug1::bighug1:xx
Thank you Magic. :hugs:
Anxiety has had to take a back seat for a while.
I am glad to say that my strength is stronger than 'IT' when I have to be. :)
t0rt01se36
12-03-16, 16:18
Sorry to read about your Mum, Carnation. Hope she gets the best care possible, in and out of Hospital.
I know you said your Mum doesn't like Strangers helping, but have a look online, to see what help is available, for someone needing care at home.
Hope you can spend time with your Mum this weekend and until she leaves Hospital.
Sending you and your family, positive thoughts and look after yourself too.
The irony of fearing the loss of your mother and the hospital losing her is just fuel to the fire I'm sure! Sheesh!
I applaud your courage and determination in being an advocate for your mother and handling your anxiety like a champ. Once she's recovered and settled, some well deserved R&R time should be considered.
Continued best wishes and as always...
Positive thoughts
Pulisa, I wish it was a simple as that. We have already exhausted sitter's for the week at a great cost and Mr C is still not 100% himself. It's a long journey that would cost about £100 in a taxi there and back and I have the other problem of my fear of being on my own, let alone under those sort of circumstances. We have added problems within the family unit, because Mr C's Brother who has already sat for Mr's C's Mum on Thursday has now got his granddaughter in hospital with a kidney problem.
We are not round the corner from the hospital, we are actually in a different County.
Also the Rugby match is on today, so the traffic will be crazy on the roads.
No, I think tomorrow this is the best option. I telephoned the ward and spoke to the nurses, so Mum will expect me then. I now feel very exhausted myself.
---------- Post added at 16:33 ---------- Previous post was at 16:26 ----------
I know Fishmanpa, nothing surprises me anymore.
Talk about fuelling the Anxiety!:ohmy:
By 'R n R', do you mean Rock 'n' Roll or is it something more boring?
Thank you tOrt01se, I have a feeling she may be in there for a while. Her mobility has declined and they won't release her if she can not walk from A-B without falling.
The problem also is her weakness in the last few days from not eating and drinking properly, so I feel she could be in there for weeks!
I know Fishmanpa, nothing surprises me anymore.
Talk about fuelling the Anxiety!:ohmy:
By 'R n R', do you mean Rock 'n' Roll or is it something more boring?
While Rock and Roll is awesome, I'm referring to Rest & Relaxation :)
Positive thoughts
:lac: Thought so Fishmanpa.
I just spoke to my sister and she expressed the same sentiment. When all this is over with our Mom and both our parents are settled she wants to disappear to some deserted tropical beach for a few days :)
Positive thoughts
Sounds good to me. :)
I've been looking after my Ma on and off for decades!
I remember phoning the Doc when I was 16 because she wouldn't get out of bed and it turned out she had pleurisy.
My Mum has battled terminal Cancer, extremely high BP, extremely high cholesterol, severe depression with suicidal thoughts, Anxiety and Panic Attacks, a serious burn and hundreds of falls over the years from prescribed drugs that did not suit her and she's out lived my Father who had nothing wrong with him most of his life! :shrug:
As she puts it, "I'm a tough old bird!".
Sorry for making stupid suggestions. Am glad that she's in no immediate danger so that a visit from you can wait until a better time for all. This will probably force your Mum into making some plans for long term care if she gets diagnosed with a condition which will make independent living a challenge. I don't think the hospital would allow her to go home unless she had this type of care in place? I would hope not anyway. I hope she gets to watch the rugby from a bedside TV-be prepared for fireworks if she can't!! Good that she's bothered about it though! xx
That's ok Pulisa, I always welcome ANY suggestions, especially when I can not think straight. :ohmy:
I'm sitting at the computer with a wet flannel on my forehead as I now have a migraine and too stressed to sleep. I am going to attempt to watch a film later.
I phoned the hospital again; yes, I am a pest aren't I? I'm a difficult person to get rid of. :D I managed to get a good response this time. See, it does sometimes work if you persevere. They said she was stable, but she was stable before she went in.
She does have a chest infection and has been put on antibiotics and is going for further scans tomorrow. He said there was something else, but was not willing to discuss it over the phone. :scared15: I am hoping that this is about her mobility and the ongoing care my Mum needs.
I wish they wouldn't do that; probably the reason for my migraine.
I reminded them gain that I would be up tomorrow and to tell Mum.
Of course, now I am feeling guilty for not going, but I also feel guilty for not arranging more care for her. Here I go again, stressing!
Please don't blame yourself. She's being treated for the chest infection which may/may not be the cause of her recent issues. I didn't realise that urine infections could cause confusion in the elderly until my father had one. Infections can really throw people off kilter.
Assess her yourself tomorrow? The hospital probably won't be able to tell you anymore until then anyway and then you get these power-crazy jobsworth withholding info because they feel like it..
Your Mum's in a safe place and is on antibiotics. You can't do anymore. She knows you will be coming tomorrow when she will probably be feeling better anyway xx
Thanks Pulisa xx
---------- Post added at 18:43 ---------- Previous post was at 18:41 ----------
Oh by the way, I mentioned on my general thread, but might as well say here as well.
Mr C has got the ALL CLEAR from his Cancer OP and has been discharged. :yesyes::yahoo:
That's great news, Carnation! Delighted for you both! xx
Carnation, I deal with my situation by blanking it out. It may sound daft, and my sister finds it heartless I think, but if I allowed myself to sit and think about things I would make myself ill. I'm sorry you're having these thoughts I really am. Hugs xx
MyNameIsTerry
13-03-16, 09:56
It's good to hear things are getting there now. What a faff these places are!
At least your mum is resting, she needs that after all this hassle, as do you both. I'm sure she will be pleased to see you.
Might they transfer her out to a local recovery home if she hasn't got enough support around her daily at home right now?
I would imagine this is going to wake her up to changes. She woke up to you deciding you would all move in together after resisting you in the past so perhaps she will with this? They get stuck in their ways but there can come a point where they need more support than we can give.
It's also good to hear about MrC's all clear! :yesyes::yahoo: That's a massive monkey off your back there and these things do intrude on our thoughts & moods whether we are thinking about them or not.
Yes, Terry, plans don't always work. If Mum had agreed 2 years ago, it may have been a different scenario now and I might not have had the relapse; who knows?
The situation now may affect everything. We can't move away if Mum is too poorly or she has to have assisted care, I couldn't leave her. Mr C wants us to get settled for our old age to come where all our friends are and a better life, but obstacles are in the way now. You see, we have no friends here at all. My only friends are on this Forum as we made our life up there 14 years ago. We don't even talk to the neighbours. I have tried, but they are too snobby. We will have to see what the situation is with Mum and arrange things around her.
Pepperpot, I know what you mean about blanking it out. I was like that most of my life, even with Dad, but for some reason, I have become so sensitive, I worry and carry guilt 24/7. I could lay awake all night just worrying about Mum. :ohmy:
I think since the relapse and staying in for days on end, it has made my mind worse and turned me in to a pathetic human being.
Every time I tell an official that I am recovering from a breakdown; like the A & E guys, they just say, "yeah, ok, well you look alright now". Well, NO, I am not.
There's no allowance for people that suffer like us, because we appear too normal from the outside and that really annoys me. :mad:
---------- Post added at 10:57 ---------- Previous post was at 10:47 ----------
Terry, meant to say it was unbelievable yesterday.
I phoned A & E and nearly half an hour in answering, to ask about my Mum and some snotty guy said he can't give any information over the phone. Then he asked me to phone back in a couple of hours and ask to speak to John. In the meantime I get a phone call from someone I just couldn't understand at all, but managed to get that she had been moved in to a ward and gave me the name. I left it a short while before phoning that ward to only find out that she was not there, so decided to phone the John bloke, who told me that she was in a different ward. So I phoned that ward and they didn't have her. So the helpful girl phoned the ward that I told her I thought she was in and she was not there either. So, I went back to John again and he told ne the same as before, so I phoned the girl again. She felt quite sorry for me and asked me to hold on while she investigated. Luckily she came back with good news and told me she was in the ward that I was first told about all along. So, I phoned the ward and this time they said she was there. I asked about her and again they said they couldn't tell me anything on the phone. I left a while and phoned again, but used a different extension number, which I got from their website and this time got lucky and managed to have a conversation with a nurse. :lac:
---------- Post added at 10:58 ---------- Previous post was at 10:57 ----------
P.s. I love the word 'Faff'. Think I might use it all day today. :D
MyNameIsTerry
13-03-16, 11:09
Yeah, I think those who haven't been through often think having a breakdown means locking yourself away and barricading the doors and sitting rocking in a ball on the floor pulling your hair out and muttering to yourself. They seem to think there should be some serious outward signs, like there is in more severe mental health issues.
There can be outward signs of things, but many of us are able to conceal our anxiety pretty well. Many of us have no choice like pulisa and I'm sure you too with all your responsibilities. I don't show mine if I can help it because I feel embarrassed.
I think you have to take things as they come right now. You know your mind can create all sorts of obstacles for the future but that's a lot of worry for things that may not actually happen and right now you are having some success with your anxiety so it's worth keeping that going as much as you can - and that means accepting these thoughts too as being only natural due to the event, but that the weight you apply to them can get badly negatively skewed of you allow your mind to race.
You will know soon enough how she is and have a good idea of what that means to your lives. Then you can think about it all and plan. Until then it will be encouraging a lot of negative thinking if you allow your mind to focus on this when the best thing is to focus on improving your anxiety and just being there for her, the latter being something you always do & then some!
---------- Post added at 11:09 ---------- Previous post was at 11:02 ----------
P.s. I love the word 'Faff'. Think I might use it all day today. :D
I also use the one the detective inspector uses on The Thin Blue Line comedy...'Stop fannying about!!!'
What a palaver!
'Phone John, he's the geezer you need luv'. Was this an "actual" John or a Cockney John? :winks:
At least you got through to that girl and she had enough gumption to find out for you. That's one of my pet hates about places like this. Where I worked if a customer called in and another dept was needed, you did the leg work for them and put them through or arranged a call back. I loathe this passing the buck business like it's YOUR problem. It's terrible service.
I guess the nurse employed some common sense in how not at least putting your mind at rest if only going to make you worry more.
Terry, he can't be Cockney John; he was Scottish!
John is quite a common name in Scotland.
The staff are quick to get hold of you when they want the patient released!
I know I shouldn't run down the NHS, we are lucky to have it, but it's just the silly rules and negligence of some of the Staff. (Good and bad in everything).
Oh, I am always faffing about Terry. :D
I hate this waiting around to go. My Anxiety was bad yesterday. In my Mind, I think I had about 40 heart attacks! I had that migraine as well, but managed to drop off to sleep watching TV, then had a good night's sleep.
I am already panicking and I am not even there yet.
What if I breakdown when I see Mum? What if I panic with the journey. What if I collapse in the hospital? (Maybe I could have the bed next to Mum.)
I don't want to let my Mum down. I need to stay strong, but my heart is thumping like crazy and I have this nervous choking cough, hot flushes and something bit my knee in the night; No, it wasn't Mr C, but it hurts like anything, that I am limping. I'm a real mess and pathetic! I'm worried that my heart will give up and not even get me there! :scared15:
Carnation, you have to try to calm yourself down. Your Mum is being looked after and is being treated for a chest infection. When you see her you will be able to find out everything else about her care and any other concerns. If you allow your thoughts to spiral you will drive yourself mad and your Mum wants to see you this afternoon, preferably in one piece!
The waiting to go is awful but the hospital would have contacted you if there was any urgent situation to address. You have to try to go on "automatic pilot" and just concentrate on getting yourself there. You're not going to have a heart attack even though it feels as though this is inevitable.. I truly feel for you but you'll get to the hospital and do your Mum proud-don't let the anxiety tell you otherwise?! xx
MyNameIsTerry
13-03-16, 12:19
You will do it, Carnation, you always do.
She will be glad to see you. Probably moan about the rugby though if she's missed it and be jealous when you tell her you ran into a load of them. :D
You did it with MrC's op and I know you will do your best. They must see upset relatives all day long so if you feel upset at any point, that's fine, don't berate yourself because the emotion can hit when you see your loved ones in hospital. It hit me deeper both times I saw my mum in there, I grew up seeing her as the boss.
Practice your techniques. Remember the tree metaphor that you are finding is helping you. You got through the other night.
Thanks Pulisa. :hugs: If I could just jump in the car and go, it would be better.
All this waiting around and preparation with Mr C's Ma is making the anxiety worse.
She thinks we are going out for a 'fun day' as the sun is shinning.
It's like the crazy helping the crazy in this household. (No pun intended).
I have tried to distract myself with other things, which has helped a bit.
It's just because I don't know how bad/good my Mum is going to be and what they are going to say to me. She hates hospitals and has always said to me not to let her go there, but this time she wanted to go???? :scared15:
---------- Post added at 12:27 ---------- Previous post was at 12:24 ----------
Thanks Terry. x
She will be so miffed about not seeing the rugby, she's waited all year for that.
I have recorded it for her though. Do you know that those rugby players were hitting the G & T's the night before the match. :lac:
MyNameIsTerry
14-03-16, 05:41
How is she, Carnation? How did you get on with the visit?
I hope everything is going well for you all.
Rugby players drinking G&T's???!!! Did they have a little pink umbrella and a sparkler in them? :winks::roflmao:
My Mum is fine. :)
She does have a chest infection and is dehydrated and her oxygen levels are low, but my main concern is her disability to be able to move. They are going to try and get her to do some physio. I saw her yesterday and she was comfortable and reasonably in high spirits. She seemed a bit disorientated and was confused about days and times and thought I was in the hospital, when I was not. She thought she could hear my voice? I think she will be in there for the week, possibly two; who knows.
I was quite pleased with myself yesterday. I confronted many phobias; long journey in the car, traffic jams, being in the car with my dementia Mum 'n' Law, the hospital, lifts, Doctors, and the anticipation of what my Mum was going to be like.
But last night and today my Anxiety is up. The light-headedness is back with a vengeance, but I am persevering with it and going to do some meditation and relaxation later today. I have battled to come out of my recent relapse, I am not going backwards!!!! I had the added pressure of having an infection from a rose thorn in my knee, which blew up yesterday and was a lovely pink colour and because I was wearing leggings, it just made it worse and by the time I got home, I could hardly bend my knee at all. So, I have been to the Docs this morning to get some ointment; another fear!
Thanks for your support everyone, I really appreciate your time. :hugs:
I had a shock today when I went up to see my Mum at the hospital.
For one thing, she was not in the ward!
They have moved her to an isolation room because she now has MRSA!!!!!! :scared15:
Apparently it came from A & E and she will be then for at least a week.
So, falling her fall, she has managed to have a chest infection, dehydration, low oxygen levels and now MRSA.
Not only do I fear for my Mum, Mr C and I are freaking out that we have also got it.
Talk about putting my anxiety to the test.
I am so upset about my Mum, I think I am going to lose her and the next thing they will tell me is that she has pneumonia! :weep:
Sheesh Carnation! I've heard of things happening in threes but not fives!
Sending positive thoughts that you catch a break.
Positive thoughts
Thank you Fishmanpa.
I don't know how I am coping, because my anxiety is bad, but I am trying to stay strong and positive.
Thank you Fishmanpa.
I don't know how I am coping, because my anxiety is bad, but I am trying to stay strong and positive.
I do.... When push comes to shove, regardless of anxiety, physical issues or anything else, we are capable of things beyond what we imagine. Your anxiety takes a back seat and you do what you have to do. It also makes you stronger and able to fend off your anxiety easier the next time a trigger comes along.
You're doing great!
Positive thoughts
Your mum will be receiving a cocktail of antibiotics to deal with the MRSA which is a horrible hazard of being in hospital. You and MrC have decent immune systems so will be fine. It's really bad luck for your poor Mum and I'm sorry you have another trauma to deal with xx
Yep. I wasn't prepared for that one Pulisa. x
I'm sorry Carnation - I know all too well about poorly mums :( Sending love xx
Thanks Pepperpot.
As you know it takes a lot of strength to even go to the hospital let alone be shocked when you get there. Sending love to you too. x
I'm finding the wine a great comfort. :winks:
MyNameIsTerry
17-03-16, 05:18
Argh, god! MRSA in A&E?! So, that will be getting investigated then.
How is she feeling? She will be plugged in to everything to keep an eye and those drips are excellent for rehydration. My mum had to go on one after weeks of the runs no stop and it made a massive difference.
She might be old, Carnation, but they still fight! My mum is in her seventies and got through pneumonia in hospital her mum fought bowel cancer in her seventies. So, whilst it must be very worrying for you right now, with the care she is getting she can turn this around and be out shouting at the rugby in no time! :hugs::flowers:
Hope you are able to talk to the staff today and can find out more about what is going on and what treatment your Mum will be having. Information from them is essential. If you know how they are intending to treat the infection you could also voice your fears about complications? Hopefully they will be able to reassure you that your Mum is in expert hands xx
Thanks for the reassuring words Terry. x
I didn't sleep well last night, neither did Mr C and it took a lot of resistance NOT to google MRSA. Mr C did and told me that the pictures were vulgar.
I feel terrible guilt for all the times I have moaned about my Mum. I feel like I am a bad daughter and let my Mum down; she has no-one else but me.
I have been crippled with this anxiety for the last 2 years and I have felt so helpless.
---------- Post added at 08:55 ---------- Previous post was at 08:36 ----------
Pulisa they said they now have a policy that they can not give any information over the phone and when we go up there, there is no-one there to speak to. They are always busy or off duty. I might kick a fuss today, though.
There's always about 8 staff on station, but no-one can help.
I have had the runs myself today, I don't know whether it is nerves, infection or the dodgy sandwich I had yesterday. Mr C feels exhausted too.
I am freaking our about this MRSA. :scared15:
MyNameIsTerry
17-03-16, 09:18
Yes, I think you make a fuss, you have a right to know what treatment your elderly mother is having and what the diagnosis is. They have no excuse for that. Do they not understand that peoples relatives are worried about them in any hospital? Part of their role is in dealing with the relatives.
Hospitals have to have action plans for things like this because this is an infection control problem. They should be preventing it in the first place but standards in hospitals have been seen to be up & down when it comes to the basics and then this happens and you will find it in the media shortly as the NHS is supposed to be stopping it happening. It can only be spread contact with someone with it. I thought when this happens the CEO is involved and someone is assigned to manage the situation. So, surely they don't want complaints from relatives about mishandling in a situation where the CEO is keeping an eye and the media are likely to be informed? They would be pretty dumb.
Here is a quick grab from NHS Choices to put your mind at rest:
Treating MRSA infections
Although MRSA infections can be more difficult to treat than other bacterial infections, they're still treatable because the MRSA bacteria aren't resistant to all antibiotics.
Minor skin infections may not always require any treatment, other than draining away any pus from the site of the infection, but in most other cases you'll be treated with antibiotics that MRSA has not yet developed resistance to.
So, it is very treatable. Please keep that in mind and try not to think the worst.
You are under a lot of stress right now so I'm not surprised you aren't sleeping. I think the runs will be the added anxiety.
You are always looking after your mum, not everyone would do all that you do. We all have our bad thoughts about our loved ones, the arguments, etc that's all part of family life but we always make up and keep going and that's the most important part. We can't take back what we think or say but neither can they. We can't go through life always saying and thinking the right things, it's impossible. They don't love us any less for that and us them either.
You are always looking after your mum, not everyone would do all that you do. We all have our bad thoughts about our loved ones, the arguments, etc that's all part of family life but we always make up and keep going and that's the most important part. We can't take back what we think or say but neither can they. We can't go through life always saying and thinking the right things, it's impossible. They don't love us any less for that and us them either.
That makes me feel better Terry. When emotions run high, you feel terrible about everything.
I phoned today and she is doing ok. She is eating and sitting up, but is in agony from the bruising on her back from the several falls she had.
Mr C and I had this last November and it took a couple of weeks before she could sit down without feeling any pain. I looked after her around the clock and she didn't get any MRSA! Once the hospital have got a hold of you, that's it! I can't intervene, especially considering her age. I phone all the time, so they expect me now.
The chest infection seems to have cleared a bit, but they will do a full test after the weekend. I worry about her being lonely and I am constantly getting the staff to relay messages to her. This must think I am a right pain!
MyNameIsTerry
18-03-16, 04:44
That's very true, Carnation. You don't just think negative thoughts about the situation, your mind likes to dig all the other evidence of failure it sees to back it's argument. It's classic Cognitive Distortion.
I'm glad she is doing well. :yesyes: She must be feeling better if she wants to eat. They bruise very easily at that age, as well as break things, so it may look bad compared to what we would normally expect to see on ourselves but the doctors/nurses will understand when it's just how they expect it to look.
She's probably bored in isolation. My mum had a private room and was bored. You usually get a TV though so that might help a bit.
Are they giving her some painkillers?
I think when we hear MRSA we think "superbug" and all the negative press about it being resistant to antibiotics, a future epidemic, blah blah blah...but that's just the media and the truth is always far from it.
Whilst her care is up to her, I think hospitals are quite used to relatives playing their part as at that age they can feel intimidated by it all and are less willing to fight for what they should get. Not all of course, but some certainly are. You are only looking out for her and it's not a criticism of the standard of care to do that.
I'm glad the chest infection is improving and as Terry said, it's a very good sign that she wants to eat. Concentrate on getting info from the named doctor rather than the internet? You know how scaremongering Google can be and the hospital staff can keep you up to date with her progress. They will be very used to concerned daughters asking about their Mums.
I hope you are able to get to your therapy appointment today. Talking it through may help you see how you are dealing with the situation competently and calmly xx
Thanks Terry and Pulisa. :hugs:
MyNameIsTerry
19-03-16, 04:43
How are things today? :flowers:
Mum is a little better. She has an airbed, because her back is so sore from the fall.
They won't test again for the MRSA until Monday/Tuesday.
I worry about her being so lonely in that room, so we are going to try and arrange for her to have a TV. I think you have to pay for this now?
I managed to get to therapy yesterday; I really needed it.
It went well and she said how impressed she was with me considering everything that I have had to cope with.
Both Mr C and I feel tired all of the time now and it is very difficult to get any rest these days. We also have Easter looming and they cancel the day centre, so we have a full week with Mr C's Mum, which is always hard going. (She likes to be entertained 24/7 and Mr C is always saying; "What did your last slave die from?")She just laughs and then says, "What are we doing now?" At nearly 90, I don't know where she gets her energy from?
I have learned to accept that she IS in the best place. I can't give her the medication she needs and I can't lift her from A - B. They know I am on their backs as the hospital and my Mum is not a problem patient anyway.
I still think she may be in there for weeks yet.
MyNameIsTerry
19-03-16, 10:49
That's good, she will be up & about in no time.
My mum had a TV in bet private room and didn't pay anything, it was just there. The bed was rubbish though, not as good as the one in the acute admissions ward. She had to add a towel to help with the pain in her ribs and she's not been able to sleep flat for years anyway. Stupid NHS but she told my dad not to kick off about a better bed. The nurses were moaning she was sitting in chair with a pillow under her rather than being in bed but weren't helping make the bed comfortable. So, it's good to hear your mum is being treated a bit more sensibly!
Good feedback from your therapist too. That's good news, especially at this trying time. :yesyes:
Being a worrier, I am now worried about her 'after care'.
I don't think having carers will prevent any further falls and I now think she needs someone in the house with her 24/7. I used to be with her 3-4 days/nights a weeks until I had my relapse and I worry that I will not be up to the job, especially 24/7.
I can't even walk up the road on my own at the moment, let alone be a carer.
I worry that she will have to go in to a home, which was something she never wanted and before I had the breakdown, that was my home too, so that would make me homeless as Mr C lives in his Mother's house as her carer.
It's all getting worrying for everyone. We could all end up homeless, just because I am ill! I am very scared about the future and looking after my Dad with Parkinson's just tipped me over the edge. What do I do, if they say she needs to go in to a home, I will surely lose my home too and I won't even be able to travel to see her as I am petrified of these places and have to be chaperoned every where. :scared15:
Take one day at a time, Carnation. Just concentrate on your Mum being free from the MRSA. No one has mentioned discharge yet and you will have to talk to the staff about aftercare. Your Mum is progressing well but she could well be in hospital for a while. She won't just be booted out overnight with no plans in place and if your thoughts spiral it will be a recipe for disaster. The main thing is for your Mum to get stronger and more reliably mobile. If the mobility remains a worry then you will have to make some decisions but I don't think you being your Mum's full-time carer would be an option should she be assessed as needing 24/7 care. It wouldn't be fair on you or on Mr C xx
Yes, Pulisa you are right, but trying telling my brain that.
I think she could be in there for quite some time, she has many issues to get through as well. I wish there was more I could do for her. I don't know whether to get anything ready for her at home and although we haven't had the best of relationships, I am actually missing her phone calls. I've been getting quite upset over it all today.
And as you know, we were supposed to be moving, so that's gone by the wayside.
As I said before, you just can't plan anything in life.
MyNameIsTerry
20-03-16, 05:39
Like was said earlier, these are the things in life that we have no control over and can come to all of us. All we can do is our best when the time comes. Uncertainty is a big problem with anxiety disorders so it is only going to feed off a situation like this. It's an environmental factor, you can't change or control it, you can only adjust & accept otherwise the impact will be detrimental to your mental health (well that's the easy therapy type of way to look at it, in reality these are hard problems to go through for any of us).
The way I see this, you have some choices right now. You can either plan & plan & plan for every eventuality and get more & more anxious. Or you can concentrate on the only thing that matters in the present and that is establishing the real care plan that is required and then worrying about the future because at least then you can ask the right questions of where you all go from here. I know this is hard with these thinking styles we have but we can try.
Some of this is the natural cycle of life and a fact because of how we are living longer. The more people age, the more some of them need more & more care and there can come a point where it's too much for a person or even several depending on what is going on in their lives e.g. work, kids to look after, etc. But you don't know whether it is that time yet, she may have physio and be able to return with support plans? It's actually a wake up call for her in some ways because she has not been looking after herself as you have said and that won't help her physically.
:hugs::flowers:
Today we are going up to see Mum, which I am excited about, but I am also terrified of catching MRSA!!! I had to google in the end and after finding out that it can be carried through dust particles that may be in the air, it has made me very anxious. :scared15:
If there was any chance of you catching MRSA the hospital would only allow visitors in to see her if they were taking "infectious precautions" ie masks etc.
MyNameIsTerry
20-03-16, 14:14
What the NHS say:
Visitors
If you're visiting someone in hospital, you can reduce the chance of spreading MRSA by cleaning your hands before and after entering the ward. You should also use hand wipes or hand gel before touching the person you're visiting.
Hand gel or hand wipe dispensers are often placed by patients' beds and at the entrance to clinical areas.
For more information about visiting someone in hospital, read about NHS hospital services for visitors.
Hospital staff
Hospital staff who come into contact with patients should maintain high standards of hygiene and take extra care when treating patients with MRSA.
Staff should thoroughly wash their hands before and after caring for a patient, before and after touching any potentially contaminated equipment or dressings, after bed making and before handling food.
Hands can be washed with soap and water or, if they are not visibly dirty, a fast-acting antiseptic solution like a hand wipe or hand gel.
Disposable gloves should be worn when staff have physical contact with open wounds – for example, when changing dressings, handling needles or inserting an intravenous drip. Hands should be washed after gloves are removed.
The hospital environment, including floors, toilets and beds, should be kept as clean and dry as possible.
Patients with a known or suspected MRSA infection should be isolated.
Patients should only be transferred between wards when it is strictly necessary.
These steps aim to reduce the chance of patients infecting themselves and others.
So, nothing in there about needing protective face masks and they do wear those in cases of infection that can be transmitted by air. Was it a medical site you read it on?
They really wouldn't let you in there without protective gear add pulisa says if it could spread infection further.
Being a Great Ormond St veteran with my son I know how easy it is for these infections to spread on the ward. Often it's via the ventilation shafts. It's the vulnerable patients who are at risk. I had to wear a mask and protective clothing with my son as I was living and caring for him on the ward.
As Terry says, it's just adhering to sensible hygiene when visiting. I do hope your Mum is better and I'm sure she was really pleased to see you x
Well, I did it. I went in the room. Doubled up on the apron and gloves, didn't touch anything. Lucky for me that Mum and I are not touchy feely anyway.
She was sitting up eating a biscuit and looking really fed-up!
I saw there was a TV and asked if it could be put on. "It's broken", they said. So, I asked if she could get another or if we could bring one in.
No, not allowed and no spares. So tomorrow I will speak to the Manager.
I managed to speak to the nurse. They took blood samples today and they get the results tomorrow. Mum said she didn't feel like eating much in there and her view was abysmal. So we nipped down to 'M & S' and got her some chocolate, fruit, sweets and cakes. The nurse also told me that she would be in the hospital for some time.
I did really well today. We had a difficult journey, because Mr C's Mum played up and on the way back the car was in total silence. I don't know which is the better of the two. I went in the lift 4 times, got shopping for Mum, went in the infected room and stayed in there for a good hour. Walked the long strip of corridors, was faced with very unwell people being wheeled in their beds and sat in the back of the car with an unpleasant atmosphere for 2 hours.
I wish there was more I good do for Mum, I feel so helpless. Mr C and I are her only visitors. I told her Sisters, but they have not gone.
Thanks for your advice Terry and Pulisa. I suffer with Health Anxiety, so it was a big deal for me. Terry I don't remember which Site it was, it just popped up.
Really well done! Your Mum has only your visits to look forward to so you faced your fears and did it anyway! I'm sure she was really pleased to see you-it can't be much fun being in an isolation room. I hope a TV can be sorted for her from another ward after the weekend-at least she'd have the option to tune in to her favourite programmes to while away the time.
Does Mr C look after his Mum while you visit your Mum? It must be very tricky catering for the 2 Mums' needs x
Thanks Pulisa. x
Yes, extremely tricky. In two different places as well. Hard for a normal person, but with both Mr C and I having health problems too, we surprise ourselves with how we cope. we could do with an extra pair of hands most days. The Day Centre is a godsend. I wish there was more help for the actual carers, but there is not, as you know, it is not as simple as that.
I'm feeling the anxiety this evening. Going in to that room was a major thing for me, but probably for most people. It's not just about visiting my Mum, I have the house to deal with as well. I'm not moaning, but I have a lot to deal with and Anxiety lets me know how much of a strain it is on me. I am also fully aware that this situation could go on for a long time and I don't think my Mum will be the person she was. She is very weak and age is against her and I don't think she can look after herself anymore.
MyNameIsTerry
21-03-16, 06:37
Well done, Carnation. :yesyes::yahoo: Now you know these situations are not as scary as your anxiety is trying to convince you. How did this compare to your previous hospital jaunts? Did you find your anxiety less to begin with? Did it just naturally decrease? Did you accept it and pull the rug from under it more easily? (tree metaphor in there anywhere?)
Most people don't like staying in hospital, they are dull & dreary places with constant boredom. My mum was the same, she wanted to get home and watch her programmes and have her freedom, get knitting, etc. They can be distressing for all sorts of reasons to those staying there due to the problems the other patients are experiencing. Really, who would want to sit in their doctor's surgery given the choice?
She's eating, that's good. Her appetite may go up & down and lets face it, the food is usually crap in those places so that doesn't do much for your appetite either!
Soon she will be out of isolation and she will be able to access more areas. Maybe soon you will be able to wheel her somewhere for a change of scenery?
The nurses will be dipping into all the sweets & cakes. :winks:
Terry, my Anxiety was definitely worse on the visit yesterday.
I had more panic on the way over in the car, so I used the 'Tree' metaphor and breathing relaxation and kept my hands in the meditation pose; the last one helps a lot. For some reason my left leg wouldn't work properly when I was walking through the hospital, it felt like jelly. And when I was in the room, yes, I wanted to run; who wouldn't? I was better on the journey back, but all evening I had adrenalin rushes, vibrating, pulsating, hot sensations and pain in my lower back area. It lasted way in to the night and even woke me up and I found that my legs burning hot.
I feel exhausted today, like I have been on a rave or something, but the adrenalin is calmer at the moment. The thing I found the hardest yesterday was being in the isolation room. No kidding, it looked more like a prison room; it's the worst room I have seen for a patient in hospital and believe me I have seen a lot.
Terry, I don't think they will take her out of isolation, it's just a felling I have.
The MRSA is not going to suddenly disappear. It is apparently being carried in a large percentage of the population. Check the figures, but I think is about 1 in 3 people that carry it around.
I think they will keep her in there for her duration.
One thing I did was check she still had her jewellery. Sounds terrible, but we have had experiences before when Mr C's Mum had her wedding and engagement ring stolen and then replaced with a cheap costume ring. My Mum likes to wear a locket that Dad gave her and never takes off her weeding/engagement/eternity ring. I am pleased to say that they are still there.
Mr C and I have a few hours off today as his Mum is at the Day Centre.
I feel no energy at all after yesterday, so the break is very welcome.
Mum said yesterday to me that she would rather be dead than lay there in that room, that's how bad it is for her. I have managed to find the Manager's name from the internet, so I will get on to that today. Mr C also suggested that we make an appointment to speak to a Doctor, which seems to be non-existent when we go up there. They still won't tell you anything over the phone.
I am concerned about Mum's mobility. By the time they have finished with her, she is going to completely disabled! They won't even let her sit in a chair.
I didn't mention before, but when we were first up there, a woman was shouting in the ward over her son who was also standing next to her on crutches. She was demanding to know what was going on as her son had been in there for some time and nothing was being done for him and she wanted to take him home to re-cooperate.
I feel they are dragging their heels in there. I mean, how come it took 5 days to find out that she had MRSA. Surely the ward/bed/area would already be infected???
Mum says the food is not great and my Mum will eat anything, so it must be bad.
The nurse said that we can take food in if we want, including meals. One plus is she can eat what she likes. At the moment, that is all she has.
Mum is still miffed about the Rugby and she said that the staff had know idea what she was talking about when she asked them for the results; they were looking at the medical report, because they thought she was talking about a blood test. :lac:
I have just phoned the hospital and after being fobbed off AGAIN with, "Can you phone back later, I can not tell you anything". I phoned and phoned until I got the Manager's name who of course on phoning, was not available. But I did speak to the Sister. I stayed calm, but firm and she did turn out to be quite helpful.
I brought up the situation with the TV and apparently none of the rooms have TVs, they have ALL been disconnected. So why did one member of staff tell me to get a card for the TV and another telling me that particular TV was broken. Then another member of staff said we can bring a TV in to find out later that there is no aerial.
This is after we bought a TV today to take up to Mum. It has a CD player built in, so maybe that is an option. But, wait, NO. The electrician is very busy and it could take some time to get pat tested. :lac:
The good news, is a Doctor is apparently going to phone me and discuss my Mum's situation. It's only taken ten days. Because of the data protection act, the nurses can not discuss any treatment or ailments with the family, not just on the phone, but in person as well. Even my Mum doesn't know what is wrong with her.
So, I await the Doctor's call and hope the CD player that I am taking up on Monday, will hopefully be up and running by Easter. :lac:
I'm pleased that her doctor will be speaking to you. At least you will know for sure what her diagnosis is and how they plan to treat her. As her next of kin I can't understand why they haven't done this sooner, data protection act or whatever..It's ridiculous-you and she have a right to know x
I've just spoken to the Doctor. :yesyes:
Although he was difficult to understand, between talking at a hundred miles an hour and what I call Technical medical words that I do not understand with a very strong accent, I sought of got the gist of what he was saying.
The chest infection has not cleared up, so they have put her on a stronger course of antibiotics. She had got dehydrated again and as a result, now has a urine infection; which I know she didn't have before she went in. She has started some mild physio, but her BP rises on movement. He did mention that there was a problem with her food pipe and added that he doesn't think it is cancer. Well, I've never seen Mum have a problem with eating her food; except for in this hospital.
The Doctor said that she will go to a rehabilitation hospital to gain back her mobility. We had this with Mr C's Mum after her stroke and she was in there for 2 months.
She had made no improvement in that time and had to be hoisted from A - B and 5 years on and she walks with a frame from one room to another at nearly 90 years old.
He also told me that when we go up there that we can ask to speak to a Doctor and someone will be able to talk to us.
Everything he said, I was not surprised at, except for the food pipe issue.
What can I tell Mum when I see her? That she is going to be in hospital for weeks, possibly months? NO. I will tell her she is doing good and we look forward to her coming out and she MUST drink more fluids.
Our next visit is Wednesday. We have the whole day off, so we can spend more time with her and the Doc said he will have more results by then..............
MyNameIsTerry
22-03-16, 06:10
They sound a bit disorganised. I'm not surprised, it was like that where my mum was. Some of the nurses were good, some didn't seem very "with it".
It's most likely by far that she got the MRSA in there, the NHS themselves say most cases are from their hospitals. I would imagine though that someone is writing a report about it as they will have to justify whether their basic cleaning standards are hitting their targets.
Yes, I guess not telling her about the length of stay is sensible right now. I don't think you can really say anymore since the doctors aren't saying either. I guess they will judge it week to were. I don't think it's the same as stroke recovery though, you know how hard that it is and this may be more minor physio to build her muscles back up as opposed to relearning to use muscles.
BP rises when we get up anyway so with her being in a more fragile condition, it's bound to stand out more.
It's good that you are speaking to people who know what they are doing. it sounds like there are issues with the nurses when it comes to accessing their superiors, whether that is their intention or whether it's incompetence, who knows but at least you know what you should be getting now.
Dehydration, especially of the elderly, is rather shocking thing in hospitals. It's one of the basics of nursing. It's been all over the media the last couple of years with nurses complaining about staffing and some proposals to get patients loved ones to be dealing with such things as toilet trips, eating, etc. The NHS needs a bloody firm kick up the arse for things like that, it's not acceptable.
My mum said the same about her stay. Acute admissions who the doctors send you too were great, once on a general ward the standards slipped a lot. However, some of the nurses were really good so that's always comforting. Like anywhere, you get jobsworths these days.
The TV in my mum's room didn't work very well, reception problems. If they are all off, and I would trust the sister plus one of the other nurses said there was no aerial, then there isn't much you can do there. The silly world of PAT testing. Buy a TV that has been certified to be ok by a manufacturer and then need a silly PAT test to confirm the same thing.
:doh: Checking a medical report for the rugby scores. Now, if she was asking about the England footie team being in a world cup final, I could understand them calling the on call psychiatrist. :winks:
I don't blame you checking the jewellery. There have been too many cases of thefts by nurses and carers over the years not to be cautious about such things.
I doubt they will keep her in a special isolation room once they can shift her onto a ward. She may get another private room. Well, if it's a dedicated isolation room, that is. It sounds like it is with it being so barren, which makes sense because the less in there, the less to worry about cleaning.
You still did it all and you used techniques to try to get you through it. You didn't give in. You are still very early on in your therapy so don't expect much from that right now and this situation is a stressful one for anyone so try to recognise how anyone would be worrying. My dad was running around after my mum like a man possessed and got told off for it a few times. :biggrin:
I was up at the hospital yesterday seeing Mum.
She has still not been eating too well and lost 6 kilos in 10 days.
All the bits I got her last time she has not touched and she doesn't like the hospital food because it is mostly spicy. So she now has a dietician.
One of the nurses is really good there. We took the TV in and he is going to sort it out for Mum. She has taken a liking to him, so that is good.
She has a urine infection and is still dehydrated. In fact on Monday she collapsed AGAIN from just trying to get up from the bed. She is very weak and fed-up!
Her chest infection had worsened and was coughing when we were there.
Today she was having an endoscopy, because they think there is something wrong with her food pipe. She has had several scans, X/Rays and her physio is just moving on the bed at the moment. She seemed confused in a dementia way and was certain that she was in a Wendy house playing with her Brother-n-law a couple of days ago.
We spoke to the Doctor and he wants to find out why she keeps collapsing, because her BP and Oxygen levels are good at the moment. He wants to rule out Cancer, so that was the reason for the endoscopy. He also told me that she will be in there for at least another week, possibly two and then she will be transferred to another hospital for rehabilitation, which I have to say is even more difficult for us to get to.
We asked if it could be somewhere nearer to us, but he said that it would not be possible. So now her 'House' and the 'Hospital' will be an hour away from each other and as I have to look after both, it just makes my life more difficult. :lac:
Her Sisters are going up to see her at the weekend which will cheer her up.
It looks as though we have long haul with this situation and Mum has no idea that she will be in there for such a long time. She told me she wanted to go home and it hurts me not to be able to reassure her that she will do that, but I have to give her hope otherwise she will give up altogether. I wouldn't be surprised if they did not let her go home at all. I have to prepare myself for that, because it is not just case of her lack of mobility, she actually collapses and passes out!
This is one of the hardest times for me with the uncertainty of my Mum's condition and the emotions that go with it. I feel responsible for her, but when she is in hospital, it feels like I am not in control, but my Mum looks as at me as if to fix things for her. :weep:
I hardly slept last night thinking and worrying about my Mum!
I phoned the hospital last night and according to the nurse, she was not a happy bunny. She had been taken for an endoscopy and was playing merry hell.
She shouted at the nurse and didn't want to have it done. (I can understand that).
So I have been picturing this all through the night.
I feel that I should have tried to have stopped this due to her age; 83, but as she keeps collapsing all of the time, there has to be a reason for this.
Its just I don't want her to feel any unnecessary pain and surely it is the head or heart that would be more of the culprit for this?
To top it all, they didn't sort the TV/DVD Player out and the electrician is off until after Easter. I told Mum we brought one up, so she will think I lied to her. :weep:
Have you asked them why it was thought necessary to attempt an endoscopy? Has she been having swallowing problems?
Have they done any tests on her at all? What are they actually doing with her all day? Has she had any tests done on her heart? What about the MRSA? Has the chest infection responded to the antibiotics and if not, are they trying different antibiotics? Has she had a chest x-ray done to rule out pneumonia?
Some of the questions that I would want answered. Also will she just be "kept comfortable" over Easter or will she continue to have diagnostic tests? I would hope that they would want to get her diagnosed asap.
Thinking of you, Carnation xx
MyNameIsTerry
25-03-16, 09:15
It's always hard to see a loved one ill and frail, you would do everything to help them but we are left helpless. We have to trust in the medical team though and keep a watchful eye.
Confusion can happen with dehydration so perhaps that was what caused her confusion with where she thought she was? Certain things like dehydration or severe lack of sleep can do that to anyone. Remember all those war films in deserts and the oasis? It seems strange though that they haven't sorted this as they normal rehydrate you in a drip and after a day or two of that I would have thought it would just be a maintenance thing? :shrug:
At least the TV is there and the intention to sort it by the hospital. It does seem a bit bizarre that a hospital has only 1 main electrician though.
It's good she has found a nurse she can trust. They will be getting him to do everything. You will have to bring him back with you when she does come out. :biggrin:
I doubt anyone is happy with those types of tests, they are not exactly pleasant. If it's needed though, it's best to rule things out. Whilst they may not think it's cancer anyway, doctors like to go though a process of elimination when they are not sure. In a way it's best really otherwise it opens up the other side of the coin, guesswork. At least this way they get some definite no's from tests to keep pushing on.
Not eating won't be doing her any good. Have they got her on a drip for that too to give some support?
I'm sure they know what they are doing, Carnation. They will get to the bottom of it.
:hugs::hugs::hugs::flowers:
Try and get some rest yourself, your mum needs you in the best condition possible. So, does MrC.
Yes, Pulisa, they have have done all of that. X/Rays, Scans, MRI, heart monitors, but the Doc thinks he saw something in her food pipe?
They took her off the drip. :shrug:
And she was not eating, because she did not like the food, too spicy; well that's what she said. Seems strange because my Mum loves a good curry.
They want to rule out Cancer of course.
She still has the chest infection and is being treated for that.
I know they will be leaving her alone over the Christmas, by that I mean, no tests or pulling her about. I do know my Mum will be furious with me when I see her, but it is not something I can intervene with, because they won't release her until they have a diagnostic to her continuous collapsing.
Do you know it took me 3 hours and 11 phone calls to even get to speak to a nurse yesterday.
I am off to my therapy now; well needed today.
Thank you both for replying, I feel so alone and helpless. :weep:
Just let it all out in your therapy. Talking about it may help just to share this with another professional? xx
MyNameIsTerry
25-03-16, 10:03
I agree with pulisa about the tests, keep them on their toes.
I hope the therapy session goes well.
Could she just be playing up due to frustration when it comes to the food?
With the 'MRSA', apparently they test you when you go in and they only test you again after a month and they release you even if you still have the MRSA. :scared15:
It's like they are only concerned for their own domain and it doesn't matter about the big wide world!
Just thought they she may be collapsing from loss of weight. I noticed she had lost a bit before she went in to hospital and the Freezer that I fill every week, didn't seem touched that much. But all the crisps, chocolate, biscuits, cake and bread was eaten.
I think she picked at stuff and not really ate any of the meal type of foods, which I understood at that age and being on your own, I would probably steer that way myself. She has been eating that way since Dad passed away, but l did notice she had lost some weight in the last couple of months.
It's all such a worry to me, but you are right about getting some rest.
Mr C are spending time in the garden today as it looks as though it will be the only nice day we are going to get. x
---------- Post added at 12:45 ---------- Previous post was at 10:13 ----------
I have just got back from my therapy and she thinks it would be in my interest to have a break from visiting my Mum, especially as she has family going over the weekend. I told her how I was not feeling so good with anxiety issues and considering it is a long haul situation and not an easy one at that, that I owe it to myself to look after 'ME and Mr C' and take some time out without feeling guilty.
I must admit that we do need the rest and the break and we have the opportunity with other visitors, but if anything should happen to Mum, I would not forgive myself.
It is obviously a big worry for you and I hope your therapy session has helped just a bit.It's good that your therapist hasn't shut up shop for Easter.
Your mum is certainly going to need some sedation if they want to do an endoscopy. The weight loss could be purely down to her reduced appetite but the docs obviously want to rule everything out. If she's having trouble swallowing or if food is being regurgitated then she needs the endoscopy. If she can eat bread with no problems then this is a very good sign that there is no problem with her food pipe. No doctor would be able to see the foodpipe-he probably meant the back of her throat.
It must be horrible not knowing and just waiting for the next bulletin from the hospital. You are doing the right thing by getting out into the garden and taking it as easy as you can xx
---------- Post added at 12:50 ---------- Previous post was at 12:47 ----------
Just read your added bit and yes, if she has other visitors then it would be the ideal time to take a break. The hospital would ask you to go in if they thought you should be there xx
She has had the endoscopy Pulisa. My personal opinion is she didn't need it anyway. But the Doc won't release her from the ward until he is satisfied he can rule out any possibilities. I have seen my Mum eat things that are quite difficult to digest if there would have been a problem in that area. The next thing they want to do is monitor her heart and I worry all of this pulling her about will make her worse in her recovery. I know my Mum, she will just give up in the end and when somebody's will goes, there is nothing you can do about it.
I have been trying to look after my Mum to the best of my ability, but once a person gives in and does not bother with caring for themselves, there is nothing I can do about that. My Mum has just wanted to lie in bed all day, even before she went in to hospital and was not getting dressed and then staying up late and picking at bits of food. At 83 years old, is it necessary they do all of this to her, when she can't be bothered with life anyway?
As I see it, they are just making things worse. She has acquired more ailments scince going in and her state of mind has declined very rapidly.
Don't you think that someone of that age would rather spend their remainder of their time just being rather than being tortured by tests and procedures?
Say for instance they found cancer. At 83, do you think she would want chemo?
No, she wouldn't have it. I know she wouldn't. I think it is all pointless.
If she has to have 24/7 care, then that is a different issue, but why put her through all of this. For what reason?
I am going to bring this up when I see the Doctor next week. I have been a little weak in this area up until now, but what they are doing is slowly killing my Mum! :weep:
I can certainly see and respect your point here. Your poor Mum does seem to have acquired a whole new set of problems since she was admitted. You know what she would want should anything sinister be found. It's a very hard and painful situation for you but you do need the full facts regarding how precarious your Mum's physical and mental health is and I hope her doctor is forthcoming with details when you see him xx
So do I Pulisa. At the moment I can't stop worrying about her, it's making my anxiety a lot worse as well. I told my Therapist today, as soon as I start making progress from the anxiety another stressful situation comes along. It's hard to deal with both. x
Yes it is. You'll worry about her because you just want the best for her and you're at the mercy of the doctors as regards what they tell you. I'm sure they would contact you instantly should the need arise and maybe you could have a chat with her sisters after their visit? xx
MyNameIsTerry
26-03-16, 08:54
I doubt not eating proper meals will be helping her on nutrients, a lot of the junk food is empty calories after all. That's certainly something to sort out later.
She's right, you do need a break. Your mum's got her sisters so you can have a day off from it all and try to relax.
When it comes to these tests, don't you need to know what is wrong so something can be done? I realise it's a lot of stress, and I can understand how it upsets you to see her stressed, but without them is it only going to continue? Is it better to do it now rather than later if her condition worsens?
You could put the point to the doctor that this concerns you and I'm sure he will understand, they must have seen loved ones worry just like this many times. Maybe most of his planned tests are over? If so, the odd extra one might be less of an upset to you all?
You do often end up with more issues when you go in those places, you are walking into an area with more exposure. When you are in those "at risk" categories, this can happen so children and the elderly can be more susceptible. It's the same with medical conditions too. It's like when they say don't come to a GP surgery unless you really need to because you will be surrounded by people with viruses and thy tell people with coughs & colds not to even come to the surgeries these days because of that unless it is really needed.
They wouldn't let people out with MRSA unless it was safe. From what I read, MRSA can be caught outside hospitals but it is considered a lesser strain.
I hope you had a better night's sleep, Carnation. You need to know what you are dealing with here. The facts will help you to plan and cope xx
I hardly slept at all last night. :weep: I had more sleep on the sofa watching TV than I did in bed. The worry of my Mum is haunting me constantly!
I am now thinking I should have tried to stop the endoscopy. What has that got to do with passing out???? My Mum also suffered an ulcer for many years and if they have damaged her stomach, that's going to cause all sorts of on-going problems.
She is never going to forgive me for not intervening. I feel terrible about everything!!!
I am the only person she has she can trust and can turn to and now they have made her completely disabled and miserable. I can't tell you much pain this is causing me. :weep: She's going to hate me and I have to live with this for the rest of me life!!!! :weep:
---------- Post added at 09:19 ---------- Previous post was at 09:12 ----------
Oh, and if they tell me my Mum is 'FINE' one more time when I phone up , I am going to scream!!!!! She's not fine. They tell you that on the phone like some malfunctioning robot and when you go up there, she's not eating or collapsed or in pain or dehydrated or infected with stale urine that has been lying in the bag which eventually burst!!!! :scared15:
---------- Post added at 09:27 ---------- Previous post was at 09:19 ----------
I'm sorry Pulisa and Terry, it's just I am so tired from lack of good sleep and anxiety pain and I just want what is best for my Mum. :weep:
MyNameIsTerry
26-03-16, 09:30
I think you are being very hard on yourself, Carnation. Those of us who have spoken to you all this time know you will do this to yourself, you are a naturally protective and responsible person. This is where you can be your own worst enemy, and I'm like this myself but over my own issues.
Try not to add to it that way. You are not letting her down, you are trying to get the bottom of it but you have a load of people getting in the way with jobsworth attitudes and it's only recently that you have got hold of the right people. So, now you can work on sorting it out. It's not YOUR fault, it's THEIR fault. The MRSA may have been preventable if they had followed their cleaning protocols but we don't know, so without a report on how it happened, it could be another reason. But it's certainly not your fault, where else can you go other than to a hospital when you need them?
It doesn't sound like you have the full facts behind why they did the endoscopy and so until you know, it's futile to beat yourself up about it. There could have been a perfectly good reason but until the doctor explains his actions, you can't really address it.
It's really sad that the NHS is this way. Basic nursing standards are failing, it's been in the media for years. All we can do is watch out for things and complain.
---------- Post added at 09:30 ---------- Previous post was at 09:29 ----------
I'm sorry Pulisa and Terry, it's just I am so tired from lack of good sleep and anxiety pain and I just want what is best for my Mum. :weep:
I think we know you well enough now to know that's the case, in bucket loads! :hugs:
Thank you Terry and Pulisa. :hugs:
Mr C doesn't understand why I am getting so upset. He tends to take everything in his stride and has an attitude of ,'what ever will be, will be'. That's why he can deal with his anxiety better than me.
The other thing is that I have been brought up quite old fashioned. If anyone had an ailment in the house, it was dealt with in-house with 'Granny's Remedies' and I grew up NOT trusting the 'Pros' and we always patched up ourselves at home.
We used to have a family Doctor years ago who was an outright alcoholic and if my Mum and Dad had listened to him, I would not be here today. (He told them I had the Flu when I actually had a Kidney Infection).
No, sorry, I don't trust Doctors and have no faith in the Medical Profession.
Take my Mum's room now. I walk in and what's the first thing I see? A syringe which is full and resting on a hot radiator. Then what else did we see? Some medication in cup on Mum's table which had gone hard from Not being taken and a pill of some sort just lying and rolling around on the table next to hardened medicine in the cup.
Then I look down the corridor of the ward at the Nurse's Station and what do I see?
1,2,3,4,5, No, I counted 8 members of staff giggling and chatting away like they were at an office party. Now, I am not mentioning any names, but this is a hospital that is supposedly one of the best in the world. It has also had a huge injection of money ploughed in to it and my mum can't have a phone or a TV or an Electrician to make her miserable time there a bit more comfortable. They also don't have time to change the catheter. And what happens as a result? Twice it has burst now and probably the cause of the infection and then the problems just go on and on. :lac:
Look at me 3 months ago. I go to the GP about a gum infection, which turned out to be caused by a bad tooth and they want to send me to the hospital for tests for cancer. Maybe it is just me, but I certainly don't enjoy the dramatics and upheaval the so called 'Professionals' cause.
Whether my Mum has to have 24/7 care is an acceptance I can handle.
But to end up with a urine infection/dehydration/loss of weight/a possible ulcer from the endoscopy/depression/disabled and MRSA is my book is NOT GOOD!!!!
What is it going to be next???
For God's sake my Mum walked down a flight of stairs the day she was taken in to hospital and the GP put on his notes that she'd had a stroke! She can't even sit on the edge of her bed now. She also ate a egg sandwich and a bowl of soup just before she left, because in our Town, we know there is NO food or drink in A & E and like my Dad, you spend the night in the corridor. Feed you with drugs to knock you out and leave you hanging around in a corridor. Yes, they DO THAT!
We have not progressed at all, especially in the basics.
All these 'Hospital Programmes' on the TV are nothing like real life. They don't get any of the staff going in for a chat with the patient or making sure you are comfortable.
I am angry today, as you can tell, because we are supposed to trust and rely on the 'Pros' when we can no longer care for our loved ones ourselves and all the hard work we put in over the years is just gone within days and we are left with she/he's fine!
I can't sleep tonight because I am worrying about my Mum.
I am going to see the Doctor tomorrow and worried what he might say.
She is been in hospital for nearly 3 weeks now and they still don't know what is wrong with her. she is very anxious to come home, but I know we are along way from doing that. She's pleading with me to make things right for her and I feel so useless and I feel like I have let her down. I fear they may insist she goes in to a home.
I will lose my home too and we will both be messed up.
I am so upset and scared. :weep:
MyNameIsTerry
30-03-16, 04:59
Carnation,
You are doing exactly what anyone else would. We are largely powerless when our loved ones are in hospital and so we have to trust in the doctors. We can keep an eye on them and ensure our loved one's needs are catered for but at some point we can't do anymore and we have to try to accept this. I'm sure any parents on here who have had children in hospital truly understand how that feels and will tell you how normal it is to feel this way.
If it helps write down your questions and any points you want to make. I'm sure MrC well be supporting you through the meeting too so lean on him if you need to, partners have to help us in such times so we don't feel we have to do everything.
I don't think any pensioners feel any different about those places, they can represent something else to them and so they would always rather go anywhere else but them. But she also needs to accept this too. She's able to make the same decision to leave as you can but she needs to be strong and accept she needs help with her health as it could help deal with these falls.
The length of time seems too much though just for a diagnosis and the doctor needs a firm kick up the backside. They moan about lack of beds to us yet piss about and cause it themselves! :doh:
Try not to think too far ahead. It could be worry over nothing. You don't know whether she will be able to return home yet but maybe she will? You will have put yourself through so much worry for nothing if she can come home. It's your anxiety trying to get you into those negative thinking styles so be aware of your anxiety trying to take you down that path because it is going to upset you and you have enough to deal with right now. I know it's natural to do this at some level but it can take over too and no one wants you suffering even more. :hugs::flowers:
They surely can't keep her in hospital for weeks on end without a diagnosis? Today is your chance to press for information regarding her care plan for the next few days. What have they actually established from all these tests/procedures? If nothing has been diagnosed does she need to be in hospital? What news on the rehabilitation?
Until you meet her doctor it's all just speculation and spiralling anxiety. I really hope you get some definitive facts today so that you can move forward and make plans for your Mum's future welfare xx
I've never known anyone taking so long to be diagnosed either!!!
Apparently she has low blood pressure now; she has never had that in her life!
I'm sorry, but I don't trust this Doctor.
Mum is declining rapidly, her mobility is so poor she can not even sit on the edge of the bed now.
I've made a list for the Doctor today.
I am already shaking with fear, upset, anger and anxiousness.
I am so worried I am going to collapse as well.
I had to wake Mr C in the end during the night, I was in such a state over this. :weep:
I am so sorry you are going through such a ordeal and not getting answers. perhaps you will get more news today about your Mum:hugs:x
Thank you Magic, Pulisa and Terry. xxx
I have just got back from the hospital. I had the worst panic attack in there as well.
I got to the lift and froze, heart jumping out of my chest and then burst in to tears.
I was trying all the coping techniques, but nothing was working.
I just couldn't get in to the lift, so in the end I used the stairs.
And then when I got to Mum's room, I burst in to tears again and that was something I didn't want to do. Bless her. She asked why I was so upset and I replied, "I've been worrying about you and I feel guilty for not doing more for you".
She replied to me, "Don't be so silly, you do lots" and then told me to stop worrying about her.
We had the meeting with the Doctor and apparently she has had pneumonia, which had entered my head too. It has now cleared up and so has the MRSA. :yesyes: :yahoo:
They are moving her back in to the General Ward, which she is not happy about now, because she can't hear the staff gossiping. (Typical :lac:)
She is not dehydrated anymore, but still a slight urine infection and still thinks she spent the day in a Wendy House.
The doctor told me that they found 2 ulcers from the colposcopy which bled, but seem to be ok now. He thinks they were caused by her acid reflux. There was no sign of cancer and they were quite happy with the results. (I still don't know why they did this?)
Her oxygen levels are good, but their main concern now is her blood pressure.
It has dropped so low that she keeps collapsing on movement. (80bpm)
Like I said, she has NEVER had low BP in her life and they have now taken her off of the blood pressure tablets. The Doctor said that pneumonia can lower your BP.
They want to keep her in there and monitor her for at least another week or two and then she will be transferred to the London hospital for rehabilitation and physio.
She was far more alert, quite a bit thinner, but very positive.
I told her that she would have to go to another hospital for her physio and she was not pleased about it, but I did not want her to be surprised by a sudden transfer and get frightened. I explained that it was much nicer and very beneficial if she wanted to carry on living in her own home. Apparently they have spoken to her about a 'Care Package' and she pulled a face in disapproval.
Thank you for your support, I got myself so wound up and feel much better now. :)
Mr C and I are now going to treat ourselves to a takeaway and a glass of wine.
That's better news, Carnation. Looks as though they have a firm plan as regards her care and discharge. Shame they didn't tell you about her pneumonia as this would explain a lot of her symptoms.
Try and have a relaxing evening now that things seem a bit clearer? Your Mum's obviously a fighter! xx
Sunflower2
30-03-16, 19:54
Carnation that's all really positive news! I hope hearing your mum say that you do lots will have an impact?
You did really good, and now you can relax tonight! Xx
That was half the worry Pulisa. Not knowing what was wrong.
Nearly 3 weeks of worry and it came to a crescendo last night.
Hey, my Mum beat the shit out of cancer.
Let's hope I have inherited the fight from my Mum to do the same with anxiety and panic attacks.
Thanks for being there, I know you have your own issues at the moment, so I really appreciate your kindness. x
---------- Post added at 20:00 ---------- Previous post was at 19:58 ----------
Thanks Kimberley x
I really appreciate you popping in. :)
And now that red wine is calling me. :winks: (I heard it was good for the heart, so it's ok).
I'm just glad you finally got some answers. Communication is so important but hospitals seem to put this at very low priority.
I can imagine your Mum putting up a hell of a fight when she had the endoscopy!:D Once she's got some strength back after the pneumonia she'll be more like her old self... and demanding her rugby fix!:Dxx
MyNameIsTerry
31-03-16, 04:52
This is good news! It's good to hear she is on the mend and in a big way by the sounds of it!
It took them long enough to diagnose pneumonia. It's harder for GP's with not having the equipment there but hospitals can just wheel you off for an x-ray. It's usually pretty easy to spot it on one of those.
Could this be the reason for her not eating whilst in there? My mum wasn't eating much when she had hers but it was also the cocktail of antibiotics as she was on the toilet constantly. Is she eating a bit better now?
That's really nice that she reassured you. She was obviously scared before but now she is feeling better she's less worried and coping better.
I bet now you can see how anxiety messes not only with symptoms but your perception...not that you don't know this already, but hindsight does tend to show up the overthinking we are prone too. Now you know why you need to stop your mind going into anxiety overdrive about the future because you can see the reality of the situation - she is doing well.
I hope you get some much needed relaxation time now. I've often found it builds up & up & up like that until you peak and hopefully come back down on the other side of the mountain. Don't berate yourself for it, you're working on your recovery to prevent/manage this in the future, accept it for what it was/is and have some peaceful time.
:hugs::flowers:
Thanks Terry x
It all makes sense now. The collapsing, losing weight, no energy and sleeping for long periods. She had the extra issue of the ulcers that they found when they did the endoscopy, but no life threatening finds.
I have to say that her room was total mess. It looked as though it had not been tidied since she arrived in there. On my last visit they had left a full syringe on a hot radiator and yesterday there was a box of chocolates that her Sisters brought in that was also put on the warm radiator. The packet of blueberry muffins were still there untouched five days out of date and there were six drinking cups on her table.
I'm not moaning about the care of the staff, because she said they were all lovely, but these are simple basics of health and hygiene that takes minutes to do.
The bin was also flowing with the used aprons and gloves and even Mr C who is not the tidiest of people said that was bad.
Terry, I don't know what went wrong with my visit/panic attack yesterday.
I had several trips there that went ok; just anxiety, not a PA.
I can only put it to the build up from the night before.
But, I knew in my head that I had to continue through the attack to feel better.
I didn't fight it, but adjusted my situation to get to Mum's room.
It was the lift that halted me and there were other reasons for it.
For one, there were hoards of people waiting for the lifts to arrive.
There were patients in beds also trying to get in to the lift.
There were a lot of sick people around me and it was very noisy.
Mr C and I were standing there for a good ten minutes and it was like the first day of the January sales. I just couldn't do it. So, even though out of breath and the heart was beating real fast and hard, I decided to climb the stairs.
Once at the top, I was not too bad and it didn't kill me, so maybe the heart thing is a feeling more so than an actual. Although it does feel very real.
I had my emotional bit with Mum, which is understandable and another moment talking to the Doctor, but was fine after that.
We also have an horrendous time trying to park the car. 30 minutes and that's after getting the car parking ticket at £4.70 per hour!
The car in front had an issue at the barrier as well and we were stuck there for ten minutes. I was too hot because I had my coat on because they said there was going to be a thunderstorm that day, which never happened.
No, thinking back, I think I did really well with coping. I came through and that was the most important issue. Don't forget, I go and check on the house as well, deal with all the post/bills/calls before I go, so it is a mountain of a day.
We nearly had a collision on a roundabout on the way home, but I was perfectly calm, even though we nearly had a car rammed in the side of us.
My travelling has improved drastically and that was my biggest issue before.
It's like my anxiety looks for an issue to cling on to, whether it is driving/travelling, eating, going out, day-to-day tasks, talking to people; but I do all of these things now whether anxiety is there are not.
Mr C and I discussed taking a week away soon when Mum goes in to rehabilitation.
We both need the break and I will know Mum is in safe hands.
It may be quite challenging when she does come out, so we think it may be a good time to go. Our last break was ruined by my high anxiety as you know.
I have come to realise how strong my Mum is and maybe I should not take so much worry on my shoulders and I should realise that I am still strong as well.
As someone said to me, the anxiety is there to protect you; although it does not feel like it, but it is. The mind is protecting the body and we are special people. :)
I wish you and Mr C all the best and hope you will have a nice break , You deserve it Carnation xxx
Thank you Magic x :hugs:
It would be nice to have a week all to ourselves.
Mum took a few steps yesterday and she has got her TV up and running! :yesyes:
Great news, Carnation! She's on the mend! You must be very relieved after what must have been a very worrying time xx
MyNameIsTerry
02-04-16, 05:40
That's great news! Was it to turn the channel over? :winks:
Physio must be a slow affair at that age but it's her motivation because it will get her home quicker.
Parking is the same at my local hospital. I think it mustn't really be a problem, more an intended design as it seems to happen everywhere! It's a total rip off too. People are always complaining around here in the media. You pay a ticket and then end up waiting forever beyond your appointment time and then they slap a fine on you. It's got to the point now where the nurses ring down to the parking attendants to make them aware so you don't have to pay more. Some people go in and end up being told they are admitted and the hospital have tried to fine them so the local groups have been all over them to work smarter in getting the parking people aware of unforeseen issues like that.
I'm surprised they didn't tell the person stuck at the front of the queue to buy a ticket...and the rest of you. :winks: The NHS certainly use this as a money making opportunity the same way councils love those parking fine teams and speeding fines.
This is real improvement, being able to face difficult situations and not allow panic to take over. The more you are doing this in various scenarios, the more you will become resilient to your anxiety and it will drop. Keep going!
Just think back to how you were not long ago and how you are starting to move forward now. Back then it would have seemed impossible, like you were doomed to be like that all the time. Now you know you are not and you are coming back from the worst of it.
Stopping it from getting as high in those situations is something that will come later, reducing the reaction is the earlier part as it will have a knock on effect.
:yesyes::yahoo:
Apparently she is getting a bit bossy now, so that's a sign she is on the mend. :D
---------- Post added at 09:41 ---------- Previous post was at 09:36 ----------
Yes Terry, I never thought in a million years that I could keep going to the hospital and face all fears. I think that day it was the meeting with the Doctor and what they said on the phone. That they found something, but couldn't tell me on the phone.
:mad: That makes me so angry when they say things like that. It turned out to be a couple of ulcers which they made bleed from the endoscopy.
I haven't told Mum yet, but they want to another one in a month's time. I really don't think she will be accommodating this time.
When that doctor said he could see something in her food pipe I thought that he must have xray eyes! My son was born with just a 2cm oesophagus and if doctors could have seen this without the need of invasive procedures then he would have been saved a lot of surgery...
Glad to hear that she is on the mend and getting a bit more feisty-always a good sign!:D
I was a bit confused as well. He said it was from an X/Ray.
I wondered whether they just wanted to do this procedure anyway.
It must have been very distressing to go through that with your son Pulisa.
No Mum likes a their child to go through stuff like that, especially if it unnecessary! x
I didn't realise that she had had an xray done-I thought he meant he'd seen something by looking down her throat!
No, my son needed major surgery anyway as he had basically just 2cm of food pipe and no way down to his stomach. It's a long story but his stomach was pulled up into his chest cavity when he was 6 months old and it's still nestling behind his lungs 30 years later!:D Apart from needing the odd dilatation where the join is, he's fine!
Oh Pulisa, that sounds horrendous! It must have put you under a huge amount of stress and worry at the time and on-going. x
I didn't have the physical symptoms then that are so strong now so I just got on with things, Carnation. I used to joke that I was too busy to get post-natal depression.. I cringe now to think how I underestimated the whole thing. I've always been the anxious type but things didn't really fall apart until my daughter was about 4 (actually it was April 10th 1995). My 21st "anniversary" is coming up but I won't be celebrating!!:D
Thanks for asking anyway xx
This morning I got a call from an Occupational Therapist from the hospital telling me that they were considering releasing my Mum in the next couple of days!
She asked me if I would be there to care for her. Still taken aback, because as far as I was concerned she was going to a rehabilitation hospital for her mobility problems.
She told me that my Mum said she wanted to go home and that they were happy with her mobility and that her low oxygen levels were the only issue now.
I reminded the OT that she only 5 days ago she collapsed when trying to get out of bed. She didn't seem bothered bout any thing I said, even when I asked how she would get up and down the stairs as they were only considering a carer to go in the house in the morning to get her dressed.
I tried to explain to her of my illness and that I could not look after my Mum on my own and my partner was already a carer for his Mum. But she did not seem bothered.
I then tried to get to speak to a Doctor, which was eventually impossible.
But I was told that there was to be a meeting on Wednesday to discuss all of this.
Considering we have already been through all of this with Mr C's Mum, we would normally be asked to present at any 'meetings' concerning the changing of living arrangements of a parent?
Found out that there is a strike on Wednesday!
We did speak to a Doctor in the end, but had to get quite forceful about it.
Mr C used his macho influence, because after nearly 3 hours of constantly phoning, hanging on the telephone and being cut off several times, I just became overwhelmed with it all. The Doctor said that she would not be leaving yet, because they are still waiting for results from some tests???? Her oxygen level is still too low, but they have mentioned that she will have to have the oxygen apparatus sent home with her when she returns.
Mr C did say to the Doctor that she seems to be coming home in a much worse condition than when she went it to hospital, which is a fact!
I am quite happy to continue with all that I have been doing for Mum, but I can't be with her 24/7 like they had suggested I do. I can't lift her for a start and I could only do this with the help of my partner who is already looking after his Mum.
This is why we were moving so that we could all be together.
I tried to explain my situation with my illness, but they just was not interested.
Apparently my Mum told them that I would be her carer!?!?
Although I do her shopping, cleaning, laundry, garden, bills, ironing, hovering, changing the bed, clearing up and erands; an official carer is a different kettle of fish.
The nurse also commented that if she stays much longer that she is more likely to catch something!?!?
Why does a Doctor say one thing and do another?
I really think my Mum needs this extra rehab with her mobility otherwise we are just going to have a repeat situation again.
And now she has the oxygen problem on top and the recovery from the pneumonia, she is going to be so weak I think to even feed herself and make a cup of tea.
They have based her improvement on going to the toilet with a walking frame which is 3 steps from her bed. What about the 30 steps on the stairs to her bed at home?
The only want to give her a carer for the morning, so what happens when she has been stuck all night downstairs all collapsed on the way up to her room?
I think Mr C and I will have to make the first provisions for a bed downstairs, which has not even been mentioned.
I said to the nurse I spoke to yesterday that I did not want a repeat performance that when after my Dad was sent home because he could walk to the toilet with a frame in the hospital to find that he fell on the top landing when trying to go downstairs and broke his neck!
My pet hate is 'Occupational Therapists!' I've seen and met loads and they are a waste of time. They get paid a ridiculous amount of money for something I could do in between cooking the dinner and washing up.
I know this is my personal situation and only me and Mr C can sort it out.
I am not asking for help and advice, it just helps me to air my problems and if anyone is in a similar situation and has any tips on coping, then I would appreciate them. :)
MyNameIsTerry
05-04-16, 10:04
It's just some jumped up therapist overstepping the mark. I couldn't post as the site has been down all night but I did read it before and think who cares, it only matters what the doctor says. There is no way they have gone from needing months in rehab to being sent home with nothing in a matter of days.
Please don't let this idiot upset you. Right hand and left hand. It's obvious they never should have done this.
Thanks Terry, that's what I thought. x
Pulisa, sorry I didn't mean to not answer to your last post, I have been in shock with what happened yesterday concerning my Mum.
I was thinking instead of celebrating your 21st anniversary with anxiety, you could maybe tell anxiety you want a divorce!!! :D
MyNameIsTerry
05-04-16, 11:00
Yes, and get it a restraining order too so it can't come running back to beg for another chance. :yesyes:
Carnation, Your situation rings back memories.
I don't want to go into detail. Just to say that I made a scene at our local hospital.
I was in a right state. I said I refuse to leave this hospital until you do something about it. I waited and waited until something was done.
I don't regret any of it. I hate fuss and mither , but I got there in the end.
So sorry you are having such a hard things going on. I know I have said this before, but I don't know what else to say to ease your worry and concern xx:hugs:
MyNameIsTerry
05-04-16, 11:45
Carnation, Your situation rings back memories.
I don't want to go into detail. Just to say that I made a scene at our local hospital.
I was in a right state. I said I refuse to leave this hospital until you do something about it. I waited and waited until something was done.
I don't regret any of it. I hate fuss and mither , but I got there in the end.
So sorry you are having such a hard things going on. I know I have said this before, but I don't know what else to say to ease your worry and concern xx:hugs:
Well done, Magic! We have to be assertive sometimes and anyone would do the same. :yesyes::yahoo:
Thanks Magic, much appreciated. x :hugs:
I feel a showdown coming on tomorrow when we go up to the hospital.
They have been extremely bad with communicating with us; the family.
We have done all of the chasing. And as Mr C has already told them, she can't come out worse than when she went in! That shut them up.
I don't have to tell you that the stress in tremendous and good ol' anxiety like to join in the fun. But, at the end of the day, I want to what is best for Mum and that is not going to kill me and Mr C in the process.
As the saying goes; they don't know their ar.e from their elbow. :wacko:
MyNameIsTerry
06-04-16, 05:00
The nurse also commented that if she stays much longer that she is more likely to catch something!?!?
That's very much stating the obvious. It's a building full of sick people so every time anyone goes to work there, visits or is admitted - they are at risk of catching things. The longer you stay, the higher the risks.
It's just probability. The longer I sit in the middle of the road, the greater the chance I'll get run over. Nothing more.
I am up at the hospital today to speak with the consultant about my Mum and the so called package they want to put together. Hey ho, another stressful day. :huh:
Yes, Terry, I try not to touch anything when I am in the hospital. :scared15:
A suggestion for you. Elderly parents will often volunteer their offspring, telling doctors, therapists etc that "my son/daughter will look after me". Legally, there is absolutely no obligation for you to take on this care, although the hospital will pressure you because they want the bed. There are things that need to be put in place before a discharge, and you need to know what they are, and what your rights are.
This has nothing to do with your love for your parent, but you need to understand that they are not interested in you, or your situation or health, only in freeing up bed space.
You may be interested in the Carers UK forum, there are many people there in this position and they can advise you on what you need to do. Its a free forum. I dont know how to do a link but Google it and you will find them.
Thank you Mercime. :)
My Mum had already told them that I would look after her.
When I said that I could not be there 24/7, she told the staff that I didn't care about her and just didn't want to look after her.
She had also told them she wanted to go home, even though she is hooked up to oxygen 24/7. Apparently she has to have this at home as well.
She refused the rehabilitation, but once we explained that she will benefit from this and a lot of persuasion, she has agreed to go.
She will have to have carers and I have suggested that she now sleeps downstairs.
The OT had not a clue and didn't really care. I asked how she was going to cope with going up the stairs to bed carrying the oxygen as well. Blank look.
So, it looks as though we have a bit of organising to do.
We've already been through this with Mr C's Mum, so we know what to do.
Mum still has no diagnosis for her low oxygen and is definitely much worse than when she went in.
It sounds awful, but my Mum has a tendency to be lazy. If someone else can do something for her, then she'll let them.
The Docs report says there is nothing wrong with her apart from the oxygen problem.
So why have we had another appointment for another endoscopy in May????
It's been quite a day today, but feel we have made some progress.
The repeat endoscopy will be to check that the stomach ulcers have healed. She may need PPI meds if stomach acid is a problem.
Is the low oxygen the result of the pneumonia? It's all very confusing, isn't it? I wouldn't give the OTs house room-paid to state the bleedin' obvious!
Low oxygen states can cause confusion-your Mum knows that you care and are always there for her xx
Thank you Mercime. :)
My Mum had already told them that I would look after her.
When I said that I could not be there 24/7, she told the staff that I didn't care about her and just didn't want to look after her.
She had also told them she wanted to go home, even though she is hooked up to oxygen 24/7. Apparently she has to have this at home as well.
She refused the rehabilitation, but once we explained that she will benefit from this and a lot of persuasion, she has agreed to go.
She will have to have carers and I have suggested that she now sleeps downstairs.
The OT had not a clue and didn't really care. I asked how she was going to cope with going up the stairs to bed carrying the oxygen as well. Blank look.
So, it looks as though we have a bit of organising to do.
We've already been through this with Mr C's Mum, so we know what to do.
Mum still has no diagnosis for her low oxygen and is definitely much worse than when she went in.
It sounds awful, but my Mum has a tendency to be lazy. If someone else can do something for her, then she'll let them.
The Docs report says there is nothing wrong with her apart from the oxygen problem.
So why have we had another appointment for another endoscopy in May????
It's been quite a day today, but feel we have made some progress.
I don't want to upset you as you are going through enough but feel I must raise some points. I don't know what the situation is with your possible loss of house but this is something you need to think about now.
Your mum may have many years of life yet, and the chances are she will not get much better physcially or mentally. You have said she is lazy and expects others to do for her - do you honestly see this getting any better? Her dependency on you will increase, her need for help with toileting, there will be worry about falls, in short, you will find yourself providing 24 hr care for someone who's needs are increasing. Even with carers coming in, that is usually a max of four times daily, and only for a short while. Could you cope with changing wet or soiled bedding, lifting if she can't move?
I don't say this to be cruel, I looked after my father and it made me ill. I had no life outside of home at all, had to give up work and was cut off from the world. These are the hard facts of caring for a frail elderly person, and if it is someone who has a tendency to be selfish anyway, it's worse. You will be expected to do everything for her. It will be like looking after a petulant child, and you will be at her beck and call with no respite.
At some point, you will face losing your home. This should be thought about now, because there will come a point when you are unable to provide the care that is needed, no matter how much you love her. A sense of duty and guilt are the driving factors, and these can put you in an awful position. Your marriage will suffer, your health will suffer. Please think carefully about your decision, and what you are signing yourself up to - because mum could live for many years yet, and your life will be on standstill. Discuss it with your husband, does he want to be a part of this?
This may seem harsh, but these are the facts. Elderly do not revert to the health they had twenty years before, they age and become frailer. Too many people say that they will cross that bridge when they come to it, but that is a blinkered view. If medcial professionals/social services think you are willing to do the hard end caring, they will not do a thing to help you - trust me on that. You must be the person calling the shots, not mum. You have a life to live too, and you already struggle with anxiety. Please think about this, and look at all options, including yes, homes. Better to think about it now, than before it's too late and you hit a crisis point - and there's nothing out there.
I wish you well.
Mercime, thank you for your honesty, it is very much appreciated.
I have already said that I won't do it and will visit Mum on my terms.
I will continue with the paperwork and bills for the house and I like to do her garden.
The laundry is not too much trouble, as is the shopping.
As far as her day-to-day-care, I am just not up to the job.
I have been there before with my Father when he had Parkinsons and had a breakdown 2 years ago. I am not willing to put myself through that again.
My Mum and I have quite a hostile relationship as far as she talks to me badly and shows very little love. This has been noted in other threads of mine.
I have already been subject to dealing with many falls with my Mum over a period of about 3 years and you are right, she is not going to improve, she will worsen as time goes on.
The system unfortunately works badly. If someone is of sound mind, they have to do what that patient wants to do. She wants to go home. I know she can't look after herself anymore and this has been coming for some time. She has no responsibility for the home, doesn't know one day from another, sits in a chair all day long, forgets to drink fluids, forgets to take her pills, and I have already been subject to clearing up messed up sheets, clothes and even carpets. It's not nice!
I have a terrible time with guilt and my Mum reminds me of this often.
I have no doubt that she will have another fall when she goes home and my worry is that we will go around in circles.
She does not want to go in to a home and I don't know to breach that path anyway.
This was my home too as I live with my partner at present following my breakdown in his Mum's house. This is a big worry for me and haunts me all the time.
I appreciate the time you have taken to help me and will look in to the options you have mentioned. x
Pulisa, she had the low oxygen before the pneumonia and she was also in hospital about year ago with exactly the same thing and they couldn't find the reason why either. It seems to have got worse since then.
Another suggestion. When mum is discharged, she will be entitled to reablement, or carers support at home, for up to 6 weeks - this is usually free. It will be organised by social services, there is usually a SW at the hospital that does the liason with OT, physio etc.
Can I advise that you say you will deal with the paperwork, shopping and garden once weekly but nothing else. If you start talking about laundry then you are in the realms of day to day care, and accepting responsibility. If she soils sheets, you launder, then you are doing the hard end care - do you see?
You need to speak to whoever the discharge team is - it won't just be the medical team, OT in the community are usually under the auspices of Social Services too. Tell them that you will not be cleaning, cooking, giving medication, toileting, or washing - but you will only do what I mentioned above. The duty of care, even if someone is in "sound mind", then falls on them, not you. They have to take responsibility for making sure she eats, drinks, takes medication, washes etc. If you do not take on this responsibility, by law, they have to. Somebody who has unexplained falls, is dehydrated, forgets medication and needing oxygen therapy is not able to look after themselves. They often quote the "sound mind" part as that will make family cave in - they have visions of their family member being left to die. Legally, that cannot happen and they know it. Now you know it too.
You have the advantage, but ask for a meeting with whoever will be concerned with the responsibility of your mother's care, as you won't be. Then take it from there. Lots of luck.
MyNameIsTerry
07-04-16, 05:31
There are further questions over this too because at what point will SS see a need for a more permanent solution in a care home and where do you stand over the house? If they can force that at some point, it would be better to know now so you can decide how to proceed.
Is there still any possibility of her joining you if you move? Or is her level of car going to be too much if you are all together?
That OT sounds pretty useless. If you asked the same question of any of the porters walking past they would say it's ruddy stupid to expect someone who can barely get up the stairs to be lugging an oxygen machine with them! :doh: To be honest, I think the porters would do a better job than this OT!
My nan & granddad had to move downstairs eventually, it's just inevitable at some point with old age. They were fine with it. I suppose there is always the stair lift options but can she get in & out of them?
Them still not knowing is very frustrating. If it's just natural decline, they should be able to rule everything else out anyway. There must be some reason she is low on oxygen?
Just a tip about the oxygen machine, I take it that it will be an elec one? Contact her electricity company because they make a note of these machines so that if any cut off work is ever needed, they make special arrangements for it. It came into play as an industry rule some years ago but there have been options to update a record to reflect it for the metering engineers to show an oxygen machine on site long before this. They are not allowed to cut them off so they take extra care over any work.
Mercime, thank you again. x
I can hear what you are saying and I am currently only doing once a week at my Mum's following my relapse. I used to go over and stay for 3 or 4 days at a time, which I have not done since November of last year. My Mum was actually with us for nearly 2 months because of bad falls and we cared for her here and got her back on her feet again. Now 3 months later, she is in exactly the same position again with the difference of going to hospital this time and it being noted that she needs help in her own home. I have said this to her for some time, but as you know, things have to get bad before something actually happens.
I would be quite happy with that arrangement of just doing the paperwork, shopping and garden. But Mum will always ask me to do things for her. I will have to find a way of explaining I can't without her thinking I am a bad Daughter.
She does not seem to get it in to head that I have been signed off sick and if I was well, I would have to work. She thinks we can bypass all of that and just sit with her in her house 7 days a weeks waiting for her die!
There are further questions over this too because at what point will SS see a need for a more permanent solution in a care home and where do you stand over the house? If they can force that at some point, it would be better to know now so you can decide how to proceed.
Terry, this is something that is very worrying for me and in all the attention on my Mum, no-one has told me how I stand with regards to somewhere to live if my Mum would have to go in to permanent care.
As you know we were intent on moving so that we could all be closer together.
My Mum is in no fit state to contemplate this at present and is something that we are looking at ways to overcome this. I don't want to leave Mum behind so I can't see her and we don't want to stay here until we are too old or unwell to move ourselves.
We can only review this when time has passed and Mum has her assessment. :shrug:
The OT is just out of kinder-garden; I think? :ohmy:
She does not know what type of oxygen Mum will have and in what form.
She didn't know that a patient loses part or most of their pension through a care package.
She didn't make allowances for any meals to be made when Mum goes home.
And I spoke about the stairs issues already.
Thanks for the tip about the electric company, I had not thought of that. :ohmy:
MyNameIsTerry
08-04-16, 04:58
If they go into permanent care homes, it's usually a matter of selling up to fund the care, isn't it? I don't really know about, I know my nan had to go into care after my granddad died and her health worsened and it was a sell up for that. She was a bit younger than yours.
If it means selling to fund care, then I don't know how the value issue works but unless you are buying it, I would think the house would just be sold on. Hopefully someone else on her will be able to help?
My question would be at what point do SS decide that this is what should happen if the family can't provide the support because I can't see them paying out for care long term when someone is sitting on property. Isn't this why some people are now signing their houses over to their children to avoid some of the issues with funding care so that they don't lose everything left over if the parent doesn't use all the pot up? I'm probably wrong there, it's probably about inheritance tax...something that should be abolished!!!
Oxygen tanks aren't going to be small or light I wouldn't of thought. Some people take them with them these days as they are more portable but if you are frail physically, I can't see someone lugging the things up a load of stairs!
I think you should have made proper use of the OT though...I'm thinking she could just about have fetched you all a cuppa. :winks:
I was wondering whether the rehab would get her strong enough to be able to join you when you move but I guess the big question there is how much care you & MrC would need to provide on top of his mum and whether it's possible?
That is exactly why parents are now signing over their property to their children.
They Do take the property to fund the care home.
Even with Carers coming in, any funds diminish over time.
Yes, we are hoping that my Mum will be able to still move.
A cuppa? My Mum told us that she has to wait 4 hours in the morning after she has been woken for a cup of tea!
I don't think my Mum realises the implications of the oxygen tank and the OP does not take in to consideration how it will affect her day-to-day living.
You can get a degree, but you can't teach common sense. :wacko:
Can you believe, they still haven't moved Mum to the rehabilitation hospital.
While they were doing the paperwork, the beds got taken and she now has to wait for a place! My Mum is going to start backtracking if they keep her waiting any longer. :mad:
MyNameIsTerry
09-04-16, 05:59
That's good, hopefully the rehab will give you the time to sort this out then and whatever you had planned for her house will go ahead as before? I guess it's hard to play by ear but since she's only going to get frailer over the years, as is natural, you must already have a plan for that anyway (especially with MrC's mum too) so perhaps it's whether it speeds some of that up?
I can believe anything with the NHS, Carnation. You snooze, you lose. They are firefighting so much, they don't wait and then you get inconvenienced in the process. Management wise, they are a bit of a shambles. The term "cottage industry" springs to mind. :winks: As long as one sister has freed up a bed for herself, stuff her colleagues elsewhere...and management above see her targets are good. In business we used to call this "the tragedy of the commons", where managers are self serving at the cost of the overall company and why all real strategic change has to be forced on middle management with a boot from the seniors in unison. A frustration I had to deal with all the time in my work trying to change things with people who just wanted to earn their bonus.
My dad had his strangulated hernia done within a couple of days as his GP sent him straight up. He was left with pain when sitting. He went back to the hospital and they said it does happen sometimes with a fold of skin inside from the op and if it won't go, they can operate to correct it. Months & months on and still the same, several visits to the GP to say 'Oh, I'll send a more urgent letter' and in the end he gave up and luckily it went away after about 9 months. A couple of weeks ago the hospital sent his "urgent" referral through...18 months after. :doh:
Yeah, I feel like we have gone backwards in the health sector. IN ALL FIELDS!
Same with Mr C when he had Kidney Stones. They could not perform any operation because a stone had lodged itself nest to the kidney and causing bleeding. So after keeping him waiting for about 6 months and lots of bleeding, the decided to put in a stent, which should only have been in for one month. 3 months later, he has an infection, 5 months later they HAVE to operate. Mr C said he had never experienced pain like it. He lost a vast amount of weight, could hardly eat, could hardly walk and became addicted to painkillers. I actually thought he was going to die at one point.
My Mum actually telephoned me from another patient's mobile last night.
She was crying and I have never heard my Mum cry like that before.
I feel so helpless and tried to convince her to hold on and once she goes to the rehabilitation hospital things would improve for her.
This situation has been coming for some time with my Mum, but I really don't know how she is going to cope with being permanently linked up to an oxygen tank.
As usual, trying to get through on the phone and get info has been a nightmare.
We spent a good 3 hours just trying to speak to a nurse. No-one knows anything, they always seem to be on a break and her Doctor has left! (No wonder he didn't phone back.) :mad:
Her room has not been cleaned since she has been in there; nearly 5 weeks and they are still piling things up on the hot radiator and her table is filled with a mountain of stuff! The clothes I took up were on the floor and it was a total disgrace!
I am reluctant to moan at the staff because of the repercussions of it on my Mum, so I just annoy them with a smile instead. What I would like to do is scream!
I am speechless Carnation. What a disgrace. I am absolutely flabbergasted .
I know this won't help but I am sending you :hugs::hugs::hugs:
Sunflower2
09-04-16, 17:57
Carnation, this is a total disgrace. They have a duty of care and they are not performing up to standards. If it was me I would go in to the hospital myself and make them sort it there and then, and not leave until I was satisfied. They will try to take the easy way out as they're so busy, but you need to be firm and stand your ground!
I'm sorry it's so difficult at the moment! :hugs:
Thank you Magic and Kimberley :hugs:
Don't worry, I am on their backs. :winks:
MyNameIsTerry
10-04-16, 04:53
If I was going to describe the NHS, it would be...http://www.bestemoticon.com/smiley/crade/0006.gif
It's all too common to hear things like this. Basic standards. They want public support but then they can't do the most basic of nursing standards. We are told they are too busy. Whilst that's not an excuse, I could understand it BUT then you see examples of yours Carnation where they have the time to stand around having a natter.
Old people are easy targets for poor service. Many don't like to make a fuss, they are grateful to have the service. This allows the shirkers to get away with doing little everywhere in life.
When my mum was in there was an old man with dementia calling out a lot in distress. They just used to leave him wailing for help not knowing where he was. Only one nurse, an Indian man, would go over to him whenever he heard his distress. Otherwise it was left to one of the other old blokes on the ward to go over and try to calm him down. My mum said when she was in the acute ward she was sent to straight away, it was all tip top. Once on the general the standard slipped greatly.
This stuff has been going on for years e.g. dehydration, not being fed, not being taken for toilet visits, etc. It's nothing to do with the current "spin" about cutbacks, that only adds to it, the issues were there before...hence why a lot of us have no faith in Labour or Tory.
She would definitely be better looked after at home for the basics, but when there is a medical problem as with my Mum with her oxygen, then they have to stay in hospital.
This is something my Mum can not grasp. Being on oxygen permanently is NOT going to please my Mum at all and I don't think she realises that she won't go back to how she was before. I can't wave my magic wand this time.
Surely there must be a medical reason why she needs oxygen 24/7 though, Carnation? Can it just be age-related?
I hope it's not too awful for you this afternoon xx
I don't know Pulisa. The hospital doesn't either. So maybe it is age related. :shrug:
We wentt over this afternoon to see Mum and she was in reasonable good form.
We still have no date of the transfer to the rehabilitation hospital either.
I showed her pictures of the bed and chair we want to get her for when she gets out and she likes them. I wanted her to see that things were happening for her return.
We took her favourites; bananas and custard creams. :D (little things mean so much when someone is in captivity).
It was not a patient who let my Mum use their phone to call me, it was a nurse and apparently got reprimanded for doing so by the Sister of the ward. He was also the one who set up the TV for my Mum and brought in an indoor aerial.
Why do the genuine people get told off for going beyond the call of duty and the ones sitting watching the Cricket for 3 hours when they should be looking after patients get ignored??? :mad:
MyNameIsTerry
11-04-16, 05:20
What a good nurse. :yesyes:
If the sister ran a good ward and was concerned about too much personal involvement with patients, I could understand this. But the ward sounds like a disgrace and so it is clearly her as a manager who is the problem here. She is expected to be inspecting that place and she must see it all as it's not a short term issue that you have seen.
We need more of these...
http://blogs.telegraph.co.uk/culture/files/2014/10/NigelCarry_2102807c.jpghttp://www.themoviescene.co.uk/reviews/_img/1007-3.jpg
http://i.dailymail.co.uk/i/pix/2014/08/07/1407366661226_wps_2_FILM_Carry_on_Doctor_1967.jpg
http://nostalgiacentral.com/wp-content/uploads/2014/07/carrondoctor_312.jpg
...someone going around the whole place kicking backsides.
I'm glad she's feeling better.
Maybe this issue with the oxygen can be treated through physio? If it's just old age then it's about cardio decline, the same thing we see as we age out of our twenties, and it can be improved with exercise. So, maybe not being as sedentary could help?
If her heart and lungs are fine then it's a mystery why she needs 24/7 oxygen and even more of a mystery as to why no medical reason has been found. Hopefully she will have more thorough tests at the rehabilitation centre because if the cause can be determined maybe some treatment can be offered other than 24/7 oxygen which sounds extreme when there is apparently no medical cause?
It all sounds as if she's just being messed around and you are too of course as you just don't know where you stand as regards her future care and treatment. I know the NHS is excellent in an emergency but what you've dealt with here sounds awfulxx
I am thinking the same as pulisa Carnation. My sister-in -law had a oxygen cylinder next to her settee, so she could use it whenever her breathing was bad. (very bad)
I remember my brother fetching the cylinders from the chemist.
Perhaps things have changed now.x:hugs:
Yes, I think she may have the cylinder Magic, but at the moment she is not so good.
She is refusing to eat and drink and has lost so much weight. She is disorientated, hears and see things that are not there and I just don't know what to do for her.
Today, I had a shock on visiting the hospital, my Mum was being wheeled out of the ward by 2 ambulance men. (She looked terrible, by the way). The Manager of the ward told me that she was going to the rehabilitation hospital and that someone had phoned me this morning and left a message. Eh, No. They phoned the wrong number and it is the 4th time I have told them what my number is.
When my Mum arrived at the hospital which is even further away from me now and we couldn't go with her as we had to back for Mr C's Mum, she apparently arrived disorientated and would not eat her meal.
In fact she has stopped eating and drinking and I think she is giving up.
The lovely nurse at the new hospital let me speak to her and she was crying and wanted to go home and I tried to explain that she needed to build herself up and make herself stronger, but she sounded like she just didn't care anymore.:weep:
This has been going on for nearly 6 weeks now and I can't say that I see any improvement, quite the opposite. I am really struggling now, feel exhausted, fighting the anxiety at the same time and racked with guilt that keeps me awake most of the night with worry and concern. If I feel so helpless and I worry for the future.
My Mum doesn't even look like my Mum anymore. :weep:
I am so sorry Carnation. Seems like your situation is going from bad to worse.
I don't really know what to say.
See if things have improved tomorrow. Keep going the best you can.
You have no reason at all to feel guilty.
You and MrC are doing your very best.:hugs:x
Magic has said it all carnation.
Your friends on here are all with you and will do our best to support you.
Please try and stay positive. I know that must be difficult :hugs: xxxx
MyNameIsTerry
14-04-16, 05:36
What a bunch of idiots! :doh::doh::doh:
Sounds like more excuses over the phone messages to me. I wouldn't believe they either.
She was feeling a bit better from what you have told us and had started eating and getting back to her old self. This is just another knock to someone at an age when they don't like change. How she is talking now could easily change as she settles in. Please try to remember that. I can remember you saying her talking about just giving up on it all earlier on in this thread...and the her attitude changed and she became more positive. So, I believe it will again and you need to not lose sight of this and upset yourself.
You are doing all you can do for her. Just keep kicking the people in charge up the backside to do their jobs and do the things you know you can do for her to keep her focussed on healthy things like eating & drinking and being more positive & accepting.
You don't know the half of it Terry, there's some things you just can't print.
I managed to sleep last night, probably because I was so exhausted from the day before. I am still struggling with the worry of my Mum and keep thinking how much worse she has become since being admitted in to hospital.
The hospital want her to have further endoscopy in May, but I am going to put a stop to it. She is 83, and after the last time when they made here bleed quite badly, and this could have affected her appetite in the process, it is not something I want my Mum to go through again.
The nurse where she is at the moment was in the opinion that I would go to visit daily. What planet are these people on? They have moved her miles and miles away, my partner has a duty to care for his Mum as a full-time carer and I can't drive or travel on my own; don't these people ever listen or make notes about situations?
As for 'Family Members', well they exist, but they don't help.
We had our car hit on the way home from the hospital yesterday. A bash and run against our wing mirror. I wanted to chase them, but Mr C said we didn't have time, because we had to get back for Mr C's Mum, but I did take their number plate, what ever good that is going to do?
I didn't mention before, but we also had a major incident with our car last Sunday, so we are today having to put the car in for repairs.
It doesn't rain for us, it pours!!!!!
---------- Post added at 09:23 ---------- Previous post was at 09:23 ----------
Thank you Magic and Carolin for your support. :hugs:
MyNameIsTerry
15-04-16, 06:16
Oh no! How have you been with the accident? I hope this isn't denting your resolve over driving. Some people are just inconsiderate morons. It wasn't Cameron's accountant beating a hasty retreat was it? http://www.bestemoticon.com/smiley/vehicules/vehicules-321.gif could have been worse, I supposed, if it had been Boris god knows the dent it would have left http://www.bestemoticon.com/smiley/vehicules/vehicules-74.gif
I don't know, other than reporting it to the police. Claiming on the insurance would cost more if your claims are not protected and then there is the excess anyway. It's always one of those things you want cash off the other person for, isn't it?
A major incident? It hasn't been vandalised again has it? Has whoever is responsible been caught or given their details if it was a prang?
Please try to get some sleep and take some time for yourself when you can. :hugs::flowers:
The best thing would be to see what happens with the rehab place. They were just doing the basics and dosing her up with meds before but perhaps this place will bring her on more?
We had our car windows smashed in the hospital car park Terry. :weep:
(We seem to be a bit unlucky with our car).
Is that Kim Kardashian on the bike? :D
I am feeling very fed-up today. I feel tired all of the time and my right leg is playing up bad. It feels like I have little people living in there moving about all the time.
It's not the normal adrenalin feeling, it just feels like strange movement inside???
I am constantly worrying over my Mum. I feel so helpless and feel like I have let her down. It's haunting me day and night. :weep:
My Mum now has a high temperature and is not feeling so good.
They also told me that she arrived still positive with MRSA from the other hospital, even though the Doctor told me she was clear! :mad:
They are testing her again tomorrow. More antibiotics are on cards too. :lac:
MyNameIsTerry
16-04-16, 05:14
Kim Kardashian would be like a wrecking ball hitting your car. :roflmao:
Surely they have picked up which idiots did that on camera? Did you get a crime reference number?
You haven't let her down, there is only so much you can do for her and rest is in the hands of the NHS. All you can do with them is fight to get them to do their best and for them to be open about things, the latter thy often seem to dislike.
How on earth can they get that so wrong? So, how she has been deteriorating (you did write similar things as before when the MRSA started) could perhaps be because it has taken hold again?
She needs to be knocking back some yoghurt too. All these antibiotics will not do her digestion & bowels much good with all the healthy flora being killed off. They are finding links between some of these flora strains and mood now...so perhaps that could be an element of her feeling low?
She has another chest infection!!!
That's what they told me, but I have a nasty feeling that it is the MRSA.
They have put her back on antibiotics AGAIN! 3rd lot now.
Like I said before, she has got worse since going in to hospital.
Unfortunately too ill for me to suggest she is discharged. :lac:
MyNameIsTerry
17-04-16, 05:09
I would have thought if that's the case, they need to test for it quickly because of it spreading. Hospitals are breeding grounds for infections like these so it's best she's somewhere else where she can get more appropriate care.
I am beside myself with it all Terry. :weep:
She definitely still has MRSA. She was tested yesterday. So the Doctor lied to us.
Because he told us that she was free of it, Mr C was touching my Mum and all things in the room WITHOUT GLOVES! Because of my OCD of catching things, I still didn't touch anything and had wondered why she had not been moved out of isolation anyway. :mad: They make me soooo angry!!!!
As far as my Mum's condition; her temperature has gone down and is feeling better. Her mobility is fair, but attached to oxygen 24/7. In the meantime, I have been ordering bed, chairs, table, disabled equipment to re-adjust the house for her.
That's been a nightmare too. Most deliveries are 6-8 weeks, but we have managed to find what we need. We are using our some of our respite time to get all of this ready.
There's been some comments aimed at us from distant relatives about us going away for a break. (Like we shouldn't). It's really upset me and I feel like I am a bad person again.These are relatives that have turned their back on my Mum and us for many years, but have suddenly want to get involved???
We got let down yesterday by Mr C's brother when he was late in arriving to look after Mr C's Mum, so we couldn't visit my Mum. This was a favour we asked of him, because we only see him for an hour once a fortnight or if we need him in an emergency. (Obviously he doesn't realise the importance of the favour. :shrug:)
He was also miffed that we are taking time out to attend to my Mum's needs and we are a month ahead of our normal time for the respite break. Even the Council commented about our time. Ehhh?? We had 1 week in January, then Mr C's Cancer Op and recovery and now another 10 days for my Mum's needs and a short break for us. (Didn't know we had to be on our hands and knees before we warrant a re-charge. (Which we practically are).
It is not like we are going sight-seeing or bathing in the sun. We are purely going to rest, sleep, eat and re-energise. As Carers we are often woken in the middle of the night several times and it does take it's toll on you. We worked it out that we roughly do 18 hours days as Carers. It's like having a baby, but they don't grow up. Apart from that Mr C and I are too old for babies. :D
I just don't know when this pressure is going to end. There is only Me! I am battling Anxiety every day and still the pressure mounts and I just want to run away from it all. :weep: There, I feel better after that moan.
Have you had a recent Carer's assessment, Carnation? There may be more opportunities for help out there x
No, not yet Pulisa. It has been loosely discussed and they suggested a carer for just the morning, but I have convinced them that she needs more than that. x
I was actually referring to your needs. Has anyone done an assessment on your role as your Mum's carer? x
No. Although I have been caring for my Mum in a loose capacity, it has never been official. But as she is at the moment, she needs dressing, washing, lifting, feeding; well basically everything, I could not do that all on my own. I would have to split from my partner to do this as well, as Mr C is a full-time carer for his Mum and that is one of the reasons we were going to move; to get everyone in the same place. At the time, my Mum did not want to move, she did not want to leave the house and look at her now; 6 weeks in hospital.
No-one has contacted me about anything. I have had to make all the calls, chase everything and basically be annoying to everyone.
WE have a mountain of work to organise before she comes out of hospital.
WE have furniture to rid of, furniture to get, Phones have to moved, key safe, all her stuff in the bedroom to be sorted; well you get the idea.
My gut feeling is that she will not cope with just the carers coming, but I know of several elderly people that can hardly walk that do have just that.
I fear for her falling or passing out. Pulisa, you have no idea how many times I have had to go over when she has not answered the phone and found on the floor, but she wants to be in her own home. My Mum has not been the same since Dad passed.
Would she consider a live-in carer? I know it's a "stranger" being there and it's a huge thing for an elderly lady to consider but it would mean her being able to remain at home? I'm sure the rehabilitation centre wouldn't consider discharging her before things are set up for her either at home or in a nursing /care home. My dad wanted my son to be his live-in carer but it just wouldn't have worked. Choosing the right carer is also a bit of a minefield. It must be a huge worry for you xx
I had never thought of that option, because it used to be my home too and I was looking after Dad with his debilitating Parkinsons and I would see Mr C at the weekend. Then after my breakdown I was with Mr C more and just staying at Mum's for 3 days here and there and then the relapse happened, which in some ways was worse than the breakdown and I found it difficult.
There are only 2 bedrooms, so it could be a problem as it is my only permanent residence which is another worry if she goes in to a home. It would be something to consider though. Our lives are complicated. Mr C and I lost everything 5 years ago; our business, home, career, money and then the parent thing happened and we just happened to be there when they all needed care.
Our lives are very complicated, but we thought by us all moving it would be the best option for all of us, but this now depends on my Mum's health.
I think we will know more in the weeks to come.
It is something that keeps me awake at night or I wake up in a panic worrying about it.
MyNameIsTerry
18-04-16, 05:29
Carnation, those hangers-on have no opinion worth listening to. They do nothing, so they have no say. The opinions that matter are those involved, like you & MrC. People will have their opinions and display their ignorance but that doesn't mean it is accurate or worth entertaining so just shut it out of your mind.
I guess MrC's brother doesn't have the same level of appreciation with having so little involvement. Like the difference between someone babysitting for a few hours compared to the parents. You've got to be in those situations to appreciate the toll they take to your life.
It sounds to me like she is best out of that other hospital. Their standards have always appeared to be very substandard and I wouldn't blame you for keeping a very close eye on the care they offered, or lack of.
The doctor is either incompetent or covering up. The NHS do this all the time, they are the masters of spin and BS.
Something to think about is how whilst your mum improved, she never got well from the MRSA. So, this could explain why she is appearing to go downhill again at the moment. Remember how she was getting dehydrated & confused again and not eating? Maybe that was because of this. So, maybe when this new team sort out her MRSA and anything else, you will see a good improvement? Perhaps you will also get some answers about the fainting as the last team don't seem very good at their jobs?
I wouldn't worry about the council asking, they are bound to do that...they don't want to spend money helping people ever if they can get away with it. They will forget about you the second they move onto another case. They just want to avoid situations so try to dissuade people from needing them for anything.
Don't feel guilty about having some time to yourselves. How many people spend their entire lives looking after others? If you were working as a paid carer for a company, you would be entitled to holidays, Why shouldn't you have some entitlement to look after yourselves too?
Yes, you are right Terry. These people have so much to say and very opinionated and never turned a hand of help in their life!
We have today put Mr C's Mum in to respite care for 2 weeks. That's not an easy task in itself and takes a while to settle her in. We both feel very tired now.
We still have a lot to do this week for my Mum, especially regarding the house.
I got a call from the OT about my Mum's assessment, which is now on Friday.
But, today my Mum had a nasty fall and hit her head on the chair. :ohmy:
How on earth do these things happen?
Thankfully there is nothing broken, but a bang to the head can cause more complications to an old lady who is already frail and weak.
IMP, I can't see how my Mum is going to mange at home with just carers popping in and Mr C said quite rightly that we don't want a full circle repeating where she is rushed to A & E from the result of another fall or passing out!
I had a little cry today as everything has just become so over whelming for me. :weep:
Sunflower2
18-04-16, 19:28
Hi Carnation, I don't really have anything much to say in terms of advice but you sound like you're coping well given the situations you're in. We are very good in a crisis so remember to think of how well you're doing. :)
You are doing so well Carnation. Having a cry is sometimes the release we need . You should feel proud of how you are managing all this. :hugs: xxx
Thank you both. x
My anxiety is up at the moment, but I am surprised myself how I am getting through all of this. I feel like I have run a marathon everyday. :ohmy: I have used up a lot of my adrenalin in gardening and I am seeing some good results now, so at least I have a positive out of it. :) My little cry released a lot tension, it does help.
MyNameIsTerry
19-04-16, 07:57
Sorry to hear your mum has had another fall, Carnation. What happened? Was she moving around when they weren't with her? They really need to find out what is causing these, although she is unwell with the MRSA and dehydration right now so I guess that could be the reason.
You are the best judge of what she needs at home and by who. If you don't think part time carers are enough, you are the best to decide. MrC is right.
Are you getting the VAT off for the aids for her house? She will be eligible.
We have ordered off a company that's sells all sorts of aids for people. We used them when my mum broke her shoulder and needed some physio aids at home...we had to buy them! Stupid NHS! They were much quicker than weeks in getting things through.
So after a call at 10pm yesterday evening, they tell they have had to transfer my Mum to another Unit because her oxygen levels have dropped even further. :ohmy:
I don't know what is going on and neither do they. I get the same answers all the time. "Not sure", "Don't know" and "We're looking in to it". :lac:
The other classic is; "She's fine", "she's stable" and "We're monitoring her condition".
Terry, she was walking from the toilet to her bed; probably unaided. The chair sits next to the bed. I also wonder whether the MRSA is the culprit for a lot her conditions.
I think they have all intentions of releasing her with it as well.
And No, they are not helping with any aids. They are not helping with anything at all really. She won't be classed as disabled, because she fits their stupid of chart of being able to just over the limit that qualifies for living in her own home.
We are picking up a chair today that is especially built for the elderly/disabled and it is not cheap! Somehow, we have to ram it into the back of the car as guess what? They don't deliver to my Mum's area. But at least we don't have to wait the 4-6 weeks.
Here's another one to add to the mix.
This morning we got woken at 6.30am by the Care Home we had put Mr C's Mum in to yesterday, telling us that she has had to go to hospital after falling out of bed and banging her head on the side table. The phone has been very hot this morning.
The famous Brother who we normally don't hear from has decided to jump in to the mix to act as some kind of hero and probably condemn us as bad people for what has happened. (This is not the first time that this has happened in the so called 'Care Homes' and it won't be last. Until some tightening is done with basic care in the homes, more and more elderly will fall and possibly cause serious damage. :mad:
So, we now have 2 hospitals to visit today and furniture to pick up for the house in between. We've only had 5 hours sleep, because we stayed up late last night as we were supposedly on a respite break. We are both very grumpy and fed-up.
I said to Mr C that ALL of her falls have been during the care of a so called professional, whether it has been a carer visiting, care home or hospital.
So, today is going to be more than heavy on us. :lac:
---------- Post added at 10:24 ---------- Previous post was at 09:03 ----------
We've, just heard from the hospital that Mr C's Mum has a bleed on the brain as a result from the fall. :scared15: Great Care Home she went to. :mad:
MyNameIsTerry
19-04-16, 10:36
That's terrible news! I hope she receives the best care and the bleed is resolved very soon. :hugs::flowers:
MrC must be very worried right now. Both of you.
I thought they are supposed to have safety rails on the beds to stop things like this happening?
Oh Carnation what a catastrophe you are both going through. It just gets worse.
Mr Cs mother should have had a bed with sides on.
I think a complaint is in order. Oh dear, I don't know what else to say. I am so sorry.
:hugs::hugs::hugs:
Thinking of you and Mr C Carnation :hugs:
Hospitals and care homes have always frightened me. Hearing what your family are going through just confirms to me how unsafe they can be . These are the very people you put your trust in when illness or old age becomes too much to manage at home. Very unnerving.
Keep strong Carnation. You are in my prayers xxx
God, you have my sympathies. My father died suddenly of a heart attack when he was 65, but in a way I was relieved as I knew I'd never have to see him get old, weak, ill, and frightened. My mother is 69 now, and I know there is going to be ****load of horror in the next 15 years. The thought of losing her weighs on me. It's like some terrible black cloud.
MyNameIsTerry
20-04-16, 05:39
It's always worried me when I've seen some of the news reports or inside filming in some. When my nan passed in hers my mum was angry because they just locked her room where she had passed in her bed, no one at least sat with her until the relatives got there, the first being my mum.
Magic is right, this should be investigated. It's not acceptable at all.
I hope you are all feeling a bit better today. :hugs::flowers:
The other brother has little to do with the situation, it's easy to point fingers when you have no concept of how difficult the task is. For a start, at what point has he said he will take over her care? :winks: Unless he's willing to step up, his opinion isn't worth much from the safety of his easy life.
Thank you Magic, Carolin, Phoenix76 and as always Terry. :hugs:
I can't describe how tired I feel today. We have so many chores to get through and we on respite!
We have both of the Mums in hospital now. Mr C's Mum is being monitored for blood clots and so on and mine is being investigated for her breathing capabilities.
They have decided not to operate on Mr C's Mum, but are keeping her in for observation. That is the best place for her at the moment.
We have already put an official complaint about the home.
Apparently, it is not compulsory to have rails anymore and they are not allowed to tuck someone in bed. It's something to do with restricting the patient. :shrug:
Instead, they have 'crash mats'. In Mr C's Mum's case. There was an over-sized cabinet that jutted out far too much which caused this injury.
If you want a bed with rails, the GP has to send a letter to the home stating this, which we did arrange, but it did not arrive. :lac: BUT, one of the Team Managers let it slip that they actually do not hold any rails in that home. This is all a new one to us, but we spoke to the Doctor at the hospital and he confirmed that this is the way that homes are going to operate now. :shrug:
I managed to see my Mum yesterday and spent a good bit of time with her and had a good chat to the Doctor. He said he is mystified over this low oxygen scenario and is now thinking it may be a simple case of her stopping over and blocking the airways.
She was in good form and as always, wanted to go home.
We have her house to sort today. Furniture out, furniture in, cleaning, shopping and maybe a little rest for us in between. We went out last night and I treated myself to a large glass of wine. I don't know what came over me, I guzzled like water. :ohmy:
I really don't know how I am getting through all of this, but when I stop to relax; there's the good ol anxiety shooting through my body. But, I understand why and accept it and use my mind to understand. The pressure is huge and exhausting.
OMG I am shocked to here the information about the regulations in care homes.
It is down right stupid in my opinion.
Carnation, you are so brave (and Mr C).
So glad you were able to have a guzzle of wine. Keep going!!! that's all you can do .:hugs:x
Have been away for a couple of days so just catching up with this. So sorry to hear about Mr C's Mum. Maybe the local Safeguarding team should now be involved? We took on Anchor Care Homes when my father died in suspicious circumstances and "won" (if you can call it that). Shoddy care and neglect needs to be fully investigated by the relevant local authorities. I know it's just another immense task to take on but don't let them get away with it? xx
OMG Pulisa. This was an Anchor Care Home too. :scared15:
We have put in a complaint and they are already saying we said things that we didn't say and telling a load of lies!
We have just spent 10 hours at my Mum's house, waited 6 hours for a bed to turn up and it still arrived without the headboard and then the guy didn't turn up to take the sofa away. We had furniture sprawled all around the house.
So much has happened today that it is almost impossible to list it all, so I won't bore you with minor details. But, there's not one bit of me that does not ache.
And this is our holiday!
Tomorrow we are going to the other hospital as it is Mr C's Mum's Birthday, then back to my Mum's hospital.
Crazy, isn't it?
I am just so grateful for any support on here. :hugs:
MyNameIsTerry
21-04-16, 05:15
What a nightmare. I'm glad you have raised a complaint, they would just keep on doing it until someone takes a stand. And it also feeds back about the poor decisions over those safety devices. That should have been safety passed and an object in the way of that is bound to be a contravention of whatever policy has been brought in.
I hope today is not so tiring Carnation.
I know you are doing a lot of travelling, but at least the physical work is done.
Well done for lodging the complaint, and I hope the necessary action is taken. No doubt it will be another case of " lessons will be learnt "
Thinking of you xxx.
Thanks Terry and Carolin. x
Unfortunately my physical work is not over. Still lots to do in Mum's house.
The incident was very serious. They were initially going to do an operation on the brain. :scared15: I think being 90, they re-considered and just kept her monitored.
Of course, her mobility has been affected further now, which results in extra work with day-to-day care. Mr C has been so together over all of this with both of the Mums and I have sort of kicked in to what you call; 'Survival Mode'.
As you can imagine Pulisa, I am just in the mood for a showdown with these people. :mad:
You need to refer to the Home's official complaints procedure and kick things off with a letter to the Home's Manager detailing your concerns x
Thanks Pulisa. x Mr C is on to it.
MyNameIsTerry
22-04-16, 07:10
Yeah, that's a big thing with someone that age. If it was needed, they would do it so at least they must think there is more than one way to proceed with this. MrC must have been in bits when they mentioned an op like that.
You know what these people are like, they will twist things, come up with silly red tape and try to string things out in the hope you give up complaining. If you feel able to progress a complaint, you should in my opinion as they need a kick up the backside and maybe it will help people going forward so it doesn't happen again.
I think pulisa's attitude towards these depts is best, think the worst of them so you don't get let down and become upset. Consider that they will try tricks and make things up, then it won't surprise you.
We are supposed to be changing from negative to positive thinking but it's not completely possible unless we fancy living on a desert island with no people...and hopefully no smug Bear Grylls either. :biggrin:
How are things today Carnation ?
I have been thinking about you :hugs:
Thank you Carolin and Terry. x
I am really feeling the pangs of anxiety now and for the first time in a while found it difficult to function and get from A to B. I've been light-headed ALL DAY!
One of the reasons for this is because I had a bit of an accident yesterday.
I was in a shop trying out a chair for my Mum and as I sat down a picture that was hanging above the chair fell on my head. :scared15: At the time I didn't think too much of it, but when I went to bed, I couldn't even put my head on the pillow as it was so sore. All of today I have been fretting about clots, bleeds and stroke! It is sore to touch, sharp little pains and a warm feeling that has been freaking me out and setting off my health anxiety. Yes, I could have gone to get it checked out in A & E, but then Mr C would have the three of us in hospital. It's getting beyond a joke now.
Mr C's Mum is out of hospital and back in to respite.
We saw her yesterday and her injury was awful to say the least.
We cheered her up with a cute teddy and a giant diamante bow brooch.
I had a phone call this morning from my Mum's hospital regarding her release.
1 week earlier than expected, meaning during our holiday away!!! :mad: The call went on so long that I was late for my therapy and only got 20 minutes instead of my usual 40. :mad: The Occupational Therapist didn't turn up today either. :mad::mad: No one has been to assess the home or care package. I got very angry with them which I won't go in to all the details, but it ended with a compromise. Apparently this was all down to my Mum pestering them because she wanted to go home and telling them that I was going to be staying with her in her home looking after her. :mad:
Anyway, the house is finished now. :)
Tomorrow we were going away for a break, but unfortunately we now have car trouble and have to cancel our holiday. :weep: Life just hasn't been treating us kindly lately.
MyNameIsTerry
23-04-16, 06:59
Crikey, it's all head injuries in your family at the moment.
MrC's mum banged her head, then you were hit with a picture frame and also MrC was bonked on the head with a rolling pin not long ago http://yoursmiles.org/tsmile/agressive/t0120.gif (http://yoursmiles.org/t-agressive.php):winks:
I hope you are feeling a bit better now? Try to remember it would take a lot of force to cause injury and the things you are worrying about. I'm sure you've seen plenty of threads about banged heads on the HA board and the worries are the same, as are the responses about how a much bigger trauma is needed to cause anything bad and it's the anxiety doing it's work. :hugs:
Does MrC's mum like nice jewellery? That sounds like a really nice thing to cheer her up.
I'm glad she's back out of hospital. At that age the slightest knock seems to bring up some horrible looking bruising so I'm sure it looks bad, but that's age doing that. It will heal. How is the internal side? They must be happy with it going to send her back?
I think the rehabilitation place need to listen to you, all those old folks always want to be out as soon as possible but it's hardly practical when changes need to be made and resources put into place. I'm glad you stood up for yourself and gave them what for! http://yoursmiles.org/tsmile/agressive/t0175.gif (http://yoursmiles.org/t-agressive.php?page=2)http://yoursmiles.org/tsmile/agressive/t0140.gif (http://yoursmiles.org/t-agressive.php):yesyes:
A real shame your holiday is cancelled. Hopefully the weather will be nice and you can get out somehow and enjoy yourselves.
Yes, Terry. We have certainly doomed on this break.
It's like a soap opera. :wacko:
We cancelled the holiday this morning and re-booked for July. At least we will have potentially better weather and hopefully we will know more how my Mum is coping.
With Mr C's Mum, we thought we would get someone to stay with her if possible. If only the Brother would do it, but he won't! :mad:
We both feel so tired with everything, it really has been too much! :(
MyNameIsTerry
23-04-16, 10:30
Ah, so when the chips are down, Mr Vocal runs for the safety option. Well should he ever dare to raise a concern again perhaps MrC will remind him her had the ability to be the dutiful son when his mum needed him but he couldn't be arsed.
Couldn't put it better myself Terry.
I feel really sad today, because it was our break away that was keeping us going.
We have worked so hard all week and so much grief and tension.
We have managed to move our holiday to July and only had to pay an administrative charge. At least we might be able to wear a t.shirt then. :D
We often say to each other that other people we know don't seem to have our problems, we do feel like we have the rough edge of the sword in our lives. I know the 'Brother' lives in twee land. :shrug:
MyNameIsTerry
23-04-16, 11:46
It's true though, you are one of the people with a lot on their plate. There will be many on here, some I can think of. Life just deals some a bad hand. I used to sit in the walk-in meetings thinking how pointless my worries were compared to people under such pressure but unable to wriggle free of it.
Oh well, it's not too far off now. I guess you just have to make the best of the time at the moment whether it's going for a meal or having a lie around in the garden in the nice weather with a book.
It does seem that way for us. There's far more I don't even mention because it is menial compared to all the other things, but we do have a lot grief and bad luck.
We could be standing in a queue and when it got to our turn they would say; 'We are full, sorry you can't come in'.
We could go out for bread at the local shop and the last loaf would just be taken seconds before us.
There could be the tiniest piece of glass in the road, but it would get in our tyre.
We would be the only car that got vandalised in the street.
The only people to get a parking ticket for accidentally typing in a 0 instead of a o within 5 minutes of parking.
The only person to be told to finish her own Wedding Dress 3 days before the big day.
The only people to have their car vandalised 3 times within one month.
The only people to have their car hit 3 times in one month. (6 times in total).
The only people to have their Insurance Certificate sent to the wrong address 4 times!
The only people to be sat by the cold open door every time we go to a restaurant.
The above are unfortunately all true and there's plenty more.........
I know we are literally not the' only people', but you get my drift? We are unlucky! :(
---------- Post added at 12:43 ---------- Previous post was at 12:15 ----------
My head is not so sore today and it has now been 48 hours since the incident.
It was the wooden frame that toppled forwards and then bounced twice on my head catching the back and the temple. It's not something I want to repeat!
---------- Post added at 12:51 ---------- Previous post was at 12:43 ----------
In the last 6 weeks I have managed to get a stinger in my knee, glass in my hand, hot oil on my face and hands from the frying pan, cutting myself in a private place with my nail when going to the loo, a pulled muscle in my shoulder from lifting something too heavy, burning my mouth from an over hot pannini and a bang on the head from a picture.
Oh my, I'm turning in to my Mother!!!! :scared15:
:hugs::hugs::hugs::hugs:for you Carnation.
Keep an eye on your head. I have been around the house checking the picture frames.
Hope your luck changes asap.x
Thank you Magic. :hugs:
It just wasn't what I needed to happen to me.
This is exactly why I never hang a picture over the bed, chair or sofa! :scared15:
The frame actually hit me twice! The side fell round the back in a curve fashion then tipped on to my temple area. It's really set off my Health Anxiety again!
---------- Post added at 22:05 ---------- Previous post was at 21:24 ----------
I also have a pinhead white spot which appeared on my tongue a couple of days ago which really stings! Oh, I am so rundown and don't know which bit of me to nurse first! :scared15: And the Doctor phoned and told me that my Mum has been cleared of any medical issues and is perfectly healthy and now off the oxygen.
I seem to be the one that needs the Doctor, sore head, spot on tongue......:scared15:
---------- Post added at 22:06 ---------- Previous post was at 22:05 ----------
I keep thinking of that GP that thought I had mouth cancer. :scared15:
MyNameIsTerry
24-04-16, 07:30
It reminds me of anywhere I've worked in customer service operations. Some customers never have a problem for years and some just seem to get them all. It was like once one thing went wrong, they were marked as half the time the stuff going wrong had no connection to the others!
You will have to call MrC, Jonah. :winks:
Which reminds me, did you have a nice day lying in the garden with a glass of wine and MrC attentively fanning you with a big palm leaf? http://yoursmiles.org/tsmile/rest/t4126.gif (http://yoursmiles.org/t-rest.php?page=2)http://yoursmiles.org/tsmile/rest/t4102.gif (http://yoursmiles.org/t-rest.php)He's still on probation :biggrin: Perhaps he can take you dancing again when you have a bit more time? Is he http://www.bestemoticon.com/smiley/danse/dans11.png or more http://www.bestemoticon.com/smiley/danse/dans04.gif
A stinging pinhead sized white dot on the tongue will be an ulcer. They tend to come along in bunches when we are stressed in some people. I had some of that. I remember a couple of times long before my anxiety started where I had a load on my throat and that was all just stress. I thrived on it back then though.
That GP that said cancer was a numpty. Remember what the professional, the dentist, said to you?
So, haven't they worked out what actually caused your mum to be like that? It's good to hear she is better but will that issue not rear it's head again? Are the putting it down to the pneumonia or something?
I'm glad your Mum is off 24/7 oxygen, Carnation. Hopefully the rehab centre have got to grips with her medical situation and will be able to pave the way towards her getting appropriate care and follow-up once she is discharged. It always seemed strange that there was no medical reason for her needing the oxygen x
Thanks Terry for putting my mind at rest, as usual you are my saviour. :hugs:
My tongue is very sore today and stinging. It looks swollen and red around the white bit that actually is raised away from the tongue. Luckily it is not stopping me from eating :) I wondered whether it came from the burning hot pannini I ate last week.
It's bloomin freezing here Terry. I had to get my Winter coat out again. The week is forecast for rain and it just adds to the depressed feeling I am now in.
My head is still sore, but not as bad. A few twinges, but I get those with anxiety anyway. A few rushes as well, but I Anxiety does that too. So, I have no idea which bit is the accident or just normal everyday pain. :shrug:
We have to take the car back to garage again tomorrow. Then my Mum is being released on Thursday. So our respite doesn't really feel like it is going beneficial.
I am really miffed about not getting away. And it looks as though we are going to lose the money as well, even though we have transferred the dates and explained we are Carers and so on. :lac: It means so much to me, because my friends are there and I never see them and I've had a part-time job waiting for me for 2 years now!
So, we are talking about the move again!
I just feel so tired and because we have stayed in the house, I still lay awake listening out for Mr C's Mum, even though she is not here.
I haven't slept well for a while now, what with my Mum as well and now I have to lay on my back because of my sore head and I don't like that as it gives me nightmares!
Sorry, I moan so much.
Mr C is not the best of dancers Terry. Although he is a professional musician and can play by ear, it unfortunately has not worked it's way in to his feet. He does his best, but will normally sit out most dances.
We are going to try and find somewhere to find a Sunday Roast today. It's not cheap round here; the normal rate is about £17 per head! So, by the time we have drinks, it will be £50. But, we intend spending the whole day in the place, wherever it will be.
It may be the only treat we get this week; being our holiday.
If I knew a Louise, I would definitely do one! (A Thelma & Louise). :D
---------- Post added at 10:45 ---------- Previous post was at 10:41 ----------
Pulisa, I am pleased too. God knows how she was going to make a cuppa with the oxygen in tow. My feelings are that it may have been related to the pneumonia or MRSA. We finished the house and it looks great. I did the garden as well and hung baskets round the window so she can see them from her bed.
I often wonder who will look after me in my old age, as there is no-one.
I am however, going to step down quite a bit and let the Carers take over.
It's proving too much to do everything and my Mum is far to dependent on me. x
I think that's a very good idea and you must start as you mean to go on.
When I die I want to be cremated as otherwise my daughter will keep my body in the house and expect me to carry on as normal...:D
It's good you manage to keep your sense of humour Pulisa.
The saying goes, 'If you don't laugh, you would cry'. How true is that?
I meant to tell you about the incident at the respite home.
We have what you call an 'in-touch' team that tell us if we can have time off and find a suitable home for Mr C's Ma. We do our checks here as much as we can and then the paperwork is sorted out. So, it is the Council that make the decision on where she stays unless it is a place she has been before or we cough up the full wack of charges.
This time her usual place was full and the booking was left a bit last minute.
We had a meeting with the main bod of the place and she seemed ok, but obviously there were issues.
Well the Council are now taking the investigation on themselves, which is brilliant for us and major for them.
The home in question is already back peddling on who said what, but the main issue here was she could have died! (She must have a head made of steel!)
This sort of thing must be brought to light for any future residents, so it doesn't happen again. x
I like the idea of being buried by a tree, just like Avatar. :D
I hate Anchor Care Homes. I'm really pleased the Council is taking action. They charge an absolute fortune for shoddy, incompetent "care". We destroyed the evidence provided by the Home when my Dad died because we were allowed access to material which had never previously been permitted but the whistleblower was so shocked by what happened that he went out of his way to help us. The whole procedure took a year but it was worth it..I hope the Home gets a rollicking and that it is made public
Tell me about it Pulisa. I have never understood how they justify their prices.
It's more expensive than staying in a top hotel.
No doubt the case will drag on and on, but the important thing is something is being done. x
My Mum has made a friend in hospital and has also been walking around the corridors with her frame. :) She is very, very eager to go home and it looks as though it will be Thursday. She was expecting to come out to warm Spring sunshine, but it looks as though Winter has returned. :(
MyNameIsTerry
26-04-16, 06:02
Did you find somewhere for a good priced meal? Countryside pubs are usually the way to go up here. Much nicer than being rammed up again the backs of other people in a restaurant and being charged too much for the privilege.
I thought you managed to transfer your holiday and pay a fee? Are you no longer getting that and having to rebook completely?
It's nice that your mum has made a friend. It will do her good. I wonder how she would feel about mixing with others her own age on a more regular basis to get her out of the house?
I'm glad the Council is taking the complaint up. Maybe a local media job too? The more public, the better with these places. It's like with the NHS, they will pull every trick in the book until a solicitor or the media are involved and then they cave in to get rid of the publicity. Maybe the same will be the case for this care home?
Yes, that ulcer is very likely a panini accident. Ulcers can look red ringed with a white lump. I often get them when I bit my gums, like when you "mis" chew something. The ones on the tongue have always been pinheads and all whitish/yellow.
---------- Post added at 06:02 ---------- Previous post was at 06:01 ----------
I think that's a very good idea and you must start as you mean to go on.
When I die I want to be cremated as otherwise my daughter will keep my body in the house and expect me to carry on as normal...:D
Just don't come back as a Poltergeist either then or you will be doing housework within the first week. :D
I'm sure I will!:D No (eternal) peace for the wicked!
I hope the Council contact the local safeguarding team as this is what should be done. Solicitors weren't interested in my Dad's case as he wouldn't have made them enough money due to his age.
Terry, we have to wait and see after we have filled out a form and the Doctor has backed us on this. There will be a charge for administration and maybe a percentage lost from the holiday cost, but you get used to protocol being so unfair in this day and age.
Oh Terry, we did end up having one of those expensive meals where I felt like a sardine in a tin. It wasn't me, I more of a fish and chip or café sort of girl, but Mr C wanted to treat me as I have been so down. £9 for a glass of wine! (I should have asked for the money instead :winks:). The weather has been awful. We can't sit our anywhere, it's cold and wet. So we are left with mooching around the shops. We may go to the cinema, but we have to put the car in the garage today. :(
My Mum also come out of Thursday, so it is not really like being on holiday at all.
The ulcer looks much better and it is now 5 days since my head injury.
I've had a few pains, twinges and soreness, but I have that with anxiety anyway, so I have no idea of telling if something is wrong, because I put everything down to anxiety. And as I spent the first day after moving furniture around in my Mum's house, bending, lifting, dragging, carrying; that must have been the real test?
My depression has set in a bit with all that's happened over the last 2 months has really got me down. I am trying to accept it as a momentary feeling, but it certainly has not been easy and I can't see it getting any better.
Hope that you are ok Terry, I always think about how you are coping even if I don't mention it at the time. You put others before yourself and I just hope you find time for yourself too. :hugs:Thank you for being there my friend.
Pulisa, I think the Council are really going to get stuck in to this case. :)
MyNameIsTerry
26-04-16, 10:32
Yeah, they always sting for an admin charge. It's better than losing all of it though. I'm sure they will accept it with a doctor putting something in writing. At worst, they may contest it and you just use the complaints process where they will likely just back down on it. Sometimes people try it on.
All the aches & pains will be from all this extra work and the lack of sleep. Lack of deep enough sleep will prevent the healing that takes place overnight so you end up feeling rough. Pushing yourself constantly and not recovering will just burn you out eventually and perhaps that's manifested as some depression? You're right, all you can do is try to accept as transient and because of all the pressure recently. It's best not to fight with it and get upset further, it will soon pass. :hugs:
I'm fine thanks. Been trying to work out what is wrong with my funny bad heads. I've had them for some months now. It's too early to tell but it has gone off for about 5 days now. I had a little bit of it today from a food trigger, but it went. The change has been wearing my glasses more. I've been taking them off at night when I'm on my laptop and in my bedroom for 5+ hours because I've been doing close work. It looks like this has been giving my some eye strain and that's where these strange heads have been coming from.
I've still got a bit of neck ache which I think it part of it too but I've noticed feeling a bit better tha last 4 days from having less of this strange brain fog. It was getting hard to concentrate and I was struggling a bit on here and getting very tired from it. I've had a bit more energy the last few nights so hopefully this is one of the physical issues that has been adding to everything.
I prefer to make myself useful anyway. It's what I would be doing in work and it can help. Thanks for the kind words.
Can you explain in a little more detail about the 'funny head'?
I know the neck can cause issues with the head.
Brain fog, is that more of a thought process?
I've just had my Mum on the phone. She asked the nurse if she could call and I wish she hadn't!
She was aggressive and talking a load of nonsense and had forgotten everything that was said 2 days ago. I then got a call from the nurse telling me her concerns for her mind, meaning confusion and imagination.
I told Mr C that I am fearful when she comes out and thar she will make my life hell.
I am so scared she will make me so ill and just talking on the phone caused horendous pains doen my left arm. I just want to run away! :(
---------- Post added at 15:48 ---------- Previous post was at 13:46 ----------
Well, that's it! Just broke down in the middle of the street. :weep: Can't take anymore. :(
Carnation - you know what I'm going to say, but it's for your sake, and in turn, your mothers. She isn't even back yet and you are suffering terribly, it is unlikely to get any better. I'm not sure if you joined the forum I mentioned, but if not, please do - you really need the support of others who know exactly the conflict of emotion you are feeling. It is honestly better to deal with this now, rather than when she deteriorates, which is an inevitability. I think taking all this on, Mr C too, is just too much. Please reconsider your options and get some expert advice and support. I would hate to see your health and wellbeing suffer, and many elderly can be totally inconsiderate of anybody's needs but their own. I know the signs well. Please take care of you xx
Thank you Mercime, I will do that. x
I have today agreed on my Mum having 3 carers per day from the Council with a review after 6 weeks. I have also spoke to the OT about an alarm button on impact.
It's not fair on the neighbours to keep running and as we are out of the 5 mile zone, we can not be included in that emergency.
Mum wanted to discharge herself today and after talking to the OT, apparently she is not mobile enough to even make a meal, because she is dependent on the walker.
The key safe is being fitted on Thursday and that's when she comes out.
The day I am dreading. :scared15:
I will just visit once a week and do the shopping, garden and paperwork.
I have accepted as well, if and when time progresses that Mum has to go in to a home, then it will have to be. I can't do it and that's that.
I have been struggling with looking after one or other of the parents for years and I am not getting any younger. The fact that my Mum is so horrible and aggressive to me comes in to the picture as well. Now, I think dementia may be on the way too. :scared15:
I know I have to firm and strong and it is not easy because of the guilt that goes with it, but I know what I have to do; it's just so hard.
Carnation that sounds like a good plan. You need to stick to it for your own mental and physical health.
I understand the guilt, but it has to work for you and your Mum. You have given everything for so long. You need to remember you and Mr C are important too.
Sometimes when we are carers we forget that there maybe times when giving everything is too much to deal with.
Be kind to yourself Carnation xxx
Thank you so much Carolin. x
Hi Carnation, You are doing the right thing. I find the older people get the more aggressive they get. nothing seems to be right. and complaining all the time , even when you are doing your best. I have a relative who is the same. As soon as you open the back door it's, do me that, do me the other. it's very exhausting.
Don't feel guilty. I am sorry you have had to cancel your holiday.
Sending Love and hope all goes well Thursday:hugs:x
It makes me feel so much better to hear that I am doing the right thing Magic.
I don't think I have had any quality time with my Mum for many years; if at all.
It has just been about what I can do for her all the time.
Thank you Magic x :hugs:
You'll still be seeing your Mum once a week or so but without the awful pressure of shouldering the entire load. BUT you have to be firm and start as you mean to go on xx
Thanks Pulisa. I feel like a robot of late, just going through the motions. :(
MyNameIsTerry
27-04-16, 10:22
Sorry to hear you had a bad day, Carnation. :hugs: I bet you will be glad when this is all settled so you know where you are with everything?
I agree with everyone else, you do need to make the decision for her and stick to it. Routines tend to be important to them but I think in your mums case she needs boundaries in the same way a parent sets them for children. Children try and test those boundaries, if they get away with it they just keep trying. I think your mums a bit like that. I remember how when you've put your foot down in the past she has fallen in line. Perhaps that's what she needs? Maybe then she just goes about her day?
So, if the hospital try and get her out a day or two early, just put your foot down and say the house isn't ready yet. They will end up keeping her in to meet the agreed schedule because they won't dare let her out. Don't give them an inch, she comes out on the agreed date because the home will be ready for her.
£9 for a glass of wine?!!! I could have drunk for that! :biggrin: I hate it when everyone is rammed in so they can get an extra couple of tables in. People move around behind you and are knocking your chair and even the waiters are almost touching your table coming past. Can't stand that. I've been in some where it's been intimate and that hasn't been as much a problem but some are bad. I prefer a bit of space. Besides, everyone can hear your conversation and you can theirs.
The heads are (were :yesyes:) like a fogged up feeling, like a cotton wool head. Sometimes it was hard to concentrate on something I was looking at. It also felt like something was a little tense inside my head.
I know my neck is still an issue though. I was having some bad spasms in it but they have been gone for a while. I've never had muscular tension until I went onto this med and it's always been there in some form but getting some in my neck is a bit more recent.
The neck can cause all sort Terry. Do you do the scrunching on the top of the shoulder massage? That can sometimes help. Also check your pillows, maybe invest in some new ones. :hugs:
I am sticking to my guns and will go once a week to Mum's house. If have an issue with meals. They say Mum is not capable of doing her own at the moment.
I told the OT what she normally has, but I know the carers do very little in that department; unless it is prepared, they don't bother at all.
Unfortunately I checked and there are no 'Meals on Wheels' service in Mum's area apart from the Council and I know she won't entertain that.
So I am looking at substitutes for her shopping list. I can also cook some chicken and take it over on my weekly visit. The neighbour next door used to have her own Chinese Restaurant and I know she has taken things in. I could also arrange with the local fish and chip shop to deliver the odd meal. To be honest my Mum has stopped eating meals as such being on her own, she mainly snacks throughout the day.
We'll get round it somehow.
The OT is also assuming that my Mum lives in a modernised house, which she doesn't!
There's no double glazing, no central heating, no gadgets like a microwave, because of my Mum's radiotherapy, she can't use it. My Dad practically made everything in the house and it is cluttered, even though we have cleared a lot out.
I am interested to see how the Carers are going to cope with all the chores in such little time. Wait until my Mum starts saying; "Can you get me this, can you do that?". :ohmy:
MyNameIsTerry
27-04-16, 11:11
Is she prepared to heat up precooked stuff? There are online companies these days that offer meal delivery services, a bit like those weight loss delivered meals. I had a brochure through for one not long ago. I don't know if they would be microwave, I would have thought oven too as a lot of people prefer oven cooking.
A neighbour who had a Chinese restaurant? I would have been hinting at regular dinner parties over there. :biggrin:
The old woman down the road my dad gets goods for is the same, she won't do things for herself. They've all been trying to come up with quick meal ideas for her so she at least tries.
Does your mum like soups? Will she heat them up? You could always make her some things like this with some chunky stuff in. Not sure how they keep though.
Yes, I started using 3 pillows instead of 2. I bought a memory foam mattress topper because my mattress is old and I've turned it every way possible. I thought it would help with my back, and on top of all the other stuff I've started it seems to have helped. I got 4 free pillows with it as it was on offer.
I do massage my neck if it's aching. I've got a massage unit, I need to get and try it to see if it helps. My parents bought me one a while back.
I thought some of it may be posture, and I guess it may still be, but I haven't really changed anything other than the glasses and things seem better. Blip started yesterday but it hasn't really carried on with the weird heads and it has been just making them worse before.
My Dad used to use Wiltshire Farm Foods (he lived in Surrey). He was a diagnosed coeliac and the company caters for a whole range of dietary needs. They arrange to home deliver to suit the customer and the meals are very easy to prepare.
Thanks for the tip Pulisa, but my Mum will not even be able to operate the gas oven because her mobility is so poor. :(
Just had a call from the hospital, my Mum has had ANOTHER FALL!!!!
I asked if they were intending to still release her tomorrow and they said yes.
There's something really wrong here and I just don't know what to do. :weep:
It gets worse Carnation, I honestly don't know how you are gong to manage with your Mum at home. you will be on pins all the time. You are not well yourself.
You are doing all sorts of jobs, doing your best. how on earth will you get on???
See how you go on at the hospital tomorrow:hugs:x
Oh Magic, it's getting beyond a joke. I don't even flinch anymore when they tell me she has had a fall. I know she will be back in hospital again or much worse if she falls and hurts herself. My Mum has become quite aggressive with me in the last few days as she thinks I am stopping her returning home. She can't seem to see the seriousness to it all. What a responsibility for me. I am really besides myself. She has become extremely paranoid and think everyone is against her and talking about the nurses preparing a body bag for her and all sorts. :weep:
I have no idea what to say carnation .
Your Mum has fallen, yet they are happy to discharge her tomorrow, knowing she lives alone.
I am beyond words.
The system is wrong,very wrong. Where is the compassion and medical understanding when you need it most.
I don't think I want to get old.
Carnation, it's not your fault. None of it. :hugs:
Thank you for your kind words Carolin.
I feel racked with guilt, but I really couldn't cope with my Mum now she is so poorly.
The whole situation has been a fiasco. I am afraid that we have to follow protocol as my Mum will not voluntary go in to a care home and she won't listen to me.
Carolin, I know someone who used to be a Ward Sister and even she could not handle her own Mother's old age and needs. I also said that I was scared of becoming a burden and beholden to someone to care for me when I grew old. She assured me that it is not like that for everyone and then I thought about two of the neighbours who live in my Mum's street. A lady who is 92 and goes to London every day and a man of 94 who travels the world. Sometimes age doesn't come in to it at all.
My Mum has always been dependent on someone looking after her. My Dad did everything and kept her in a shroud. Where I have been extremely independent in the past and had to survive through some very difficult situations.
It is only anxiety that holds me captive now and a lot of it has come from my parents.
My Mum expects too much from me and judges my life and decisions.
She would be quite happy for me to split from my partner to tend to her needs and not give it a second thought. My Mum gets very jealous of anything good in my life and it is not me that notices this, Mr C can clearly see how she is with me.
But, she is still my Mum and I will help her as much as I can. x
sleepyt-rex
28-04-16, 06:50
I feel so sorry for your mum...hope she will get well soon
MyNameIsTerry
28-04-16, 07:37
Another fall?!!! What's happened this time? Is she trying to do things on her own rather than ask or are they not helping her?
If she is having all these falls, do they know what is causing them? Is it just frail health? I thought they were giving her rehabilitation so she comes out and doesn't keep having these problems?
If she is still failing doing normal tasks, how do they expect her to cope at home when someone can't be with her all the time? Perhaps they don't care as long as they can kick them back out into the community?
Has the panic button thing been installed? Is it one they carry around with them so if this happens when she is alone she can get help?
Carnation, carers are not allowed to cook food, only heat up meals in the microwave, its not that they can't be bothered. They can prepare a sandwich or similar.
Reablement means the carers at home will be encouraging mum to be as independent as possible, that's the theory anyway. Occupational therapy should have arranged for a home visit as soon as she is discharged, this will be done via Social Services - have they spoken to you yet? I would also check if a Continuing Health Care Assessment has been made at the hospital? This is important because it decides who will be funding her care.
She is your mum Carnation and of course you care for her - but that should not be at the expense of your wellbeing. You mentioned that mum would be quite content to see your marriage suffer so she could get what she wants..you know how selfish this is, and its nothing to do with age! But stick to your guns, if the hospital want to discharge her -after a fall - tell them that you feel its an "unsafe discharge" and you will take it further if anything happens during the reablement period, this might make them think twice about discharging her.
Terry, they call them falls, but it is more like a collapse of momentary state of being un-conscious. You can't fall if you are sitting on a chair and that's where she was this time. It's the oxygen again. They took her off it and when they do this, she collapses.
The hospital told me that because there is nothing medically wrong with her?????
Eh? Oxygen??? They can not keep her in hospital. Eh? Oxygen???
In other words, they can't fix her and want the bed.
I told them she has been falling for years, but it has now got a lot worse.
They are just not listening to me.
Mercime, we have already told them; "Be it on their own head for discharging her in this condition". They laughed.
I asked about the continuing care package and they said that she was not eligible.
They also said that someone would make an appointment for her on-going package at a cost. She will have 3 carers a day from the Council, which is an improvement on the first assessment of only 1.
Mercime, I understand that they can't make meals. Thank you, I checked and I was told by the social worker. The social worker seemed quite nice, but on discussing the alarm button, there were complications with it. I originally opted for the alarm on impact. But, then he told me that he needed two neighbours as key holders and they would be contacted when the alarm is raised and they would have to sit and wait with my Mum until the ambulance came. Considering the number of falls my Mum has and the kind neighbours who have already been going in previously to my Mum and assisting her, they have said that they don't want the responsibility and I can respect that. So, the alarm button is a no go for now. They can't set it up without two key holders, not even one. Most of her neighbours are in their 60s and 70s anyway.
We are out of the 5 mile radius to be down as one. It's all so complicated and worrying. I fear there will be another fall/collapse and that is what we have been dealing with for the last few years. Even before my Dad passed away.
She has a slight shadow on the lung which they have put down to radiotherapy damage, whether this causes the falls, I don't know. Neither do they. :shrug:
We are going over today and will stay until the carer turns up in the evening and then we will do an unexpected visit tomorrow. You know, in passing.
Wish me luck, I think I am going to need it.
Why isn't she eligible for a continuing care package, Carnation?
Is the social worker happy for her to have no alarm button? Maybe he considers the 3 carers a day sufficient protection should she have a fall/absence. I presume she doesn't move about much in the day as her mobility is poor?
The OTs need to come and do a home assessment as Mercime says. Maybe then things will be clearer? It must all seem very daunting x
I don't know Pulisa. :shrug:
The OT didn't even turn up for the appointment.
Hold on to your seat, it gets worse!
I have just spent the last 12 hours at my Mum's house.
I am totally exhausted, stressed and angry.
First off, no-one turned up to put in the key safe.
Secondly, we had to stay on with Mum to let the first carer in who turned up at 5.30pm to put her to bed when it should have been 7.30pm. (Caught out, do you think?). She could not speak very good English and looked as though she fall down if you blew on her.
Now, because my Mum had not had an assessment of her home, I said to Mr C, how earth are they going to know where everything is?
She has been allocated 3 carers a day; 50 mins in the morning, 30 mins at lunchtime and 40 mins in the evening. In this time they have to prepare meals and oversee that she eats and drinks as well as the normal procedure of toilet, washing, dressing and so on. Now Mr C'c Mum gets 30 mins for just a toilet break and she gets 40 minutes in the evening not to include meal preparation.
I eventually found out through the hospital who the Agency was for my Mum as the Council don't provide carers anymore, it is contracted out.
It was like talking to people working from a telephone box. And laid back is putting it lightly. Anyway, the carer came, I showed her around, showed her where the important thing were kept, which actually took a bit of time, so told her not to bother about the meal as we had decided to get fish and chips.
I let her get on with it and tried my upmost not to interfere and even left her with Mum while we went to get the takeaway.
Well, coming back, what do I see?
She had left the front door open! :ohmy:
Well, that was it and after Mum had told me that she tried to put her pyjamas on by putting the right leg on to the left leg; yes that is difficult to picture, I have realised that this agency is not up to scratch. We should know, we've seen enough of them.
In anger, I have left messages all over the place. The Agency, the OT, the Social Worker. And where's the pyhsio package??? What a sham.
I don't want to get involved, but at the same time, Mum does need to be looked after.
I am so angry and we have to go back over there tomorrow because of this.
I phoned the ward and there suggestion was she go back in to hospital.
Her arms are black and blue, she's lost 2 stone in weight and she is still having a go at me.
I read the report and she fails miserably on most points.
Everything needs assistance or help. She is basically disabled.
I am so, so angry. :mad:
As you can imagine, I am NOT looking forward to tomorrow or any future days like this.
No wonder you're angry! Why can't anyone just do their job properly? You can understand why people set up cameras to check their loved ones' care, can't you. I'll be thinking of you tomorrow, and will be right behind you hoping your anger gets results x
Thank you 23fish. I feel better now I have got that off my chest, but you are right, people just don't seem to do their jobs, but are quite happy to take your money.
MyNameIsTerry
29-04-16, 07:44
Yes, the government are even telling people to consider putting covert cameras in!
What a shambles. I can understand a foreign worker having various jobs and how these agencies can be bad (I knew someone who worked at one and said never again, she had to dump her toddler at a minutes notice and drive all over the place for sod all money on a zero hours contract) but leaving the front door open and putting the wrong leg in the pyjamas?!!!
I think if you put a complaint in, doing it to the LA as well. Some of these companies might not really care and flit from contract to contract.
What happened in the chair isn't a fall as you say, that's more like a faint or passing out for some reason. How on earth can they discharge her when that is happening? Whilst I hate to say this, if that can happen like that, when else could it happen? Even if they can't work out the cause, surely they should have a solution and that isn't a discharge with no treatment for the problem. Why even go in there in the first place? It's like you said before, it could be in & out via ambulances when it happens again.
I just can't get my head around how utterly worthless all this hospital care has been. And now the community end is just as bad. To many people and no one in charge by the sounds of it.
So, what happens now with a panic button? My gran had a cord by the bed but this is going back over 20 years. She needs something on her ideally doesn't she?
Obviously your Mum isn't safe now so you could contact her local Safeguarding team to voice your concerns about this haphazard care package? It sounds as though she has been discharged back into the community with no care plan and no medical diagnosis for future care with her GP at the very least. It's as if the past weeks of hospitalisation were irrelevant.
I know it's early days re being back at home but this sounds very inadequate and dangerous for a fragile elderly lady. Would it be worth trying to get the district nurse to come in to make an assessment if the OTs are not getting involved? Also her GP could make a home visit? x
Your absolutely right. NO CARE PLAN!
As we have already been through this, we know the normal protocol.
Since then I have also checked out the report on this care home and there are issues particularly with administering medication. Which the carer did not even mention at all. The other things, simple things like, closing the curtains, putting the heating on, making sure her jug of water is filled. I can see my Mum only getting 3 drinks a day.
And the timings of the visits are not planned well. She has 14 hours in bed and there gaps are spaced evenly. Who's going to do the laundry for instance, I had not agreed to do this. Washing-up, who's doing that?
It was my idea to put her in pads at night. No-one has discussed anything with me.
There answer is she goes back in to hospital. :mad:
And in between all of this, my Mum feels unwanted and depressed.
She can't even chat tot he carer, because she does not understand half the time.
Well, let's see what happens today. :shrug:
---------- Post added at 09:01 ---------- Previous post was at 08:51 ----------
Oh, and my Mum was starving when she came out.
She had a whole tin of tomato soup, 3 cups of tea and fish and chips. :lac:
Key safe has been installed. :yesyes:
Now the Carer couldn't find the key safe and kept ringing the bell until my mum had to struggle and answer the door.
I spoke to many people today about my Mum's care that I was getting all the names and numbers mixed up at one stage.
I went over to my Mum's house again today; another 5 hours. I had a good chat with the carer about the front door situation and other things and Mum seems to like her, so we will see how we go.
I failed on the care plan as most of the OT's had gone on holiday as from today, because of the Bank Holiday week-end. I read the notes and it just states toilet, dressing, providing food and drink and washing.
But, there are no notes like we have for Mr C's Mum about making sure the fire is turned off at night, closing the curtains, what she eats, whether she wears pads or not; you know the sort of thing I mean. The package is so basic and the carer did not even know where anything was.
Apparently we have to wait for a more permanent package to be put together after 4 weeks.
So in other words. When it is free, you get the bear minimum and when you have to pay, they may listen more. :shrug:
My Mum was under the impression that I was going to cook for every night. She was also under the impression that we were going to visit EVERYDAY!
Mr C said today that my Mum was manipulative and I thought, "Welcome to my world". She got sulky when we left her today and was phoning within the hour. :lac:
I think my Dad created a monster! He did everything for her.
I am learning more and more to say NO and do things on my terms.
I know the last couple of months have been extremely difficult, but now the carers are in, I can hopefully let them get on with it. I pray for small miracles.
A OT turned up today unannounced. She was actually really nice and I mentioned the timings on the calls and some other issues. I have her number, so that makes me feel better to have someone to call.
Mr C and I are going to try and get the remainder of our respite to relax and spend on ourselves; 2 days. So there may be some wine drinking and shopping on the cards for me. :)
It is the 2 year anniversary of my Dad's passing today, so I'll have a drink for him. x
MyNameIsTerry
30-04-16, 06:14
That indeed sounds very sneaky to get them out of hospital as quick as possible with a basic care package that they know is bare bones. :mad: But the whole thing in hospital has been a shambles anyway, like pulisa said it's as if she has never been in there.
Like Mercime was saying earlier, they try to protect themselves by doing the minimums and dumping on the relatives in the hope they take over and it saves them money. I guess all you can do against that type of attitude is kick them constantly until they do what they should be.
Are some of those things needed in a care plan? Or are they seem as minimum standards of some kind so they are left out because they are expected for all clients?
It's good your mum likes this carer. Is she someone she can have a chat too as well?
Regarding the care plan, because this is reablement, designed to get her independent again, it is pretty bare bones. But there are some basics that can be tackled.
The key safe. Carnation, ring the care agency and tell them under no circumstances should they be ringing the doorbell, all carers should know the position of the safe. Pads etc. This needs to be taken up with the OT urgently. Trouble is, I know these people lie, they did it with my dad, but I won't go into that here.
You can be strongly involved without taking on care Carnation, you have to be brave and authoritative! Make sure you have the numbers you need and you can give them hell if needs be.
For future care, at the end of reablement. It isn't free, and if mum has savings over £23,000, she will need to pay for her care. Please have a look at this http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/funding-care.asp
as it is important to be prepared in advance. For the moment, mum will probably have different carers coming in, it won't be the same one all the time. Make sure you have the Care Agency number to call, in case you need it. Turning fire off etc should have been on the care plan. I think you may need to contact Social Services about this (they will be who is organising care). Do they have you down as next of kin? Do you have power of attorney? Things that will help you in the short and long term x
Terry, the carer is sweet, but unfortunately her English is poor and not of our English ways. (She wanted to make Mum a sandwich out of coleslaw when I was there). :ohmy:
We had 3 more calls from my Mum after we left yesterday and one this morning, because the carer, a different one, could not find the wash bowl.
Mum sounded fed-up and we were too. Bearing in mind that one of my best points is organisation and management, you really couldn't need for anything in that room.
There's notes everywhere and the wash bowl you can see as you walk in the room.
My guess is she has been looking in the kitchen.
Now because there have been no notes made in the folder, show won't know what to do for Mum, so I hoping that she can tell them.
The good news is that she managed to get in by using the safe key, but I wonder if she will remember to put it back????? :ohmy:
Mercime, I have already told them about using the doorbell and some issues. My response was lame. But, I do have someone I can complain to now, but unlikely over the Bank Holiday week-end.
The way it's going with the carers, I can see my Mum telling them to go forth with!!!
I also took note of what you said when asked what I would do.
I said I would visit once a week, unless on holiday or ill and do the shopping, paperwork and tidy garden. I had to bite my tongue from saying more, because I did do a lot more than that. But, I stuck to my guns.
There has been no talk about the laundry, cleaning of the house, changing of beds and so on. Mum, in her usual way has already given me some errands for stuff. :lac:
I am the next of kin, it's not as pretty as it sounds. I did wonder about power of attorney, but Mum is of sound mind and now out of hospital.
This Agency seems the worse one we have come across in our experience and it's only been 2 days.
Anyway, today we are going for retail therapy and lunch to try and compensate for the break we didn't have. :)
How did the shopping go, Carnation? You must have planted a seed as I appear to have bought a new handbag this afternoon! X
I had a bad day. :( I had to put my foot down with my Mum.
She woke us up early Saturday morning and altogether, she phoned me 15 times!
She stopped phoning me and then began phoning my partner.
She ruined our lunch, shopping and most of the day.
She was moaning about everything and being nasty to me, after everything I have done for her over the last couple of months. She thinks I should be living with her and I said NO. When I told her to stop calling us constantly and give the carers a chance to do their job, she swore at me and called me a cow!
It upset me deeply, but I had to stop her from calling, she was stressing me out so bad. :weep: She wants a nurse maid, not a daughter.
Yesterday was better. She didn't phone and I just made the one call to her to see if she was ok. She keeps asking me to move in with her, It's like a broken record.
I get the impression that my Mum is not trying to do ANYTHING for herself and in turn will make her oxygen worse again from no movement. I am afraid I talking to a brick wall. She has just phones this morning as well asking about her tablets, which is just another excuse to phone and moan about everything. Mr C is doing most of the talking to her now and she has just asked why I won't talk to her. :ohmy:
I have also realised that a vast amount of my anxiety has been related to my Mum.
I felt so much better when she was in hospital, because she couldn't keep calling me, asking me round and I knew she was being looked after. Since she has come home, I have noticed my anxiety is much worse.
We had a terrible evening last night. There was a 18th party going on in someone's back garden with what I can only call 'Rave' music. You could hear it over the TV and as the evening went on, the lads were urinating in the street and running in and out of peoples gardens and the noise was horrendous. Eventually the Police came, but did you know that they have to have x amount of complaints before they can do anything about something like this?
Just as well Mr C's Mum was not at home. Imagine seeing a silhouette through her curtains of a lad peeing in the garden. :ohmy:
She comes out today, so it's back to the old routine again. :(
Our holiday, was not a holiday at all, if it was I definitely want a refund!
23fish, what is your handbag like? Is that your weakness?
Mr C has a thing about shoes and ties. I don't know why, because he never wears a tie, but he get's so excited about them. :)
Hope you are ok Terry and anyone else looking in. x
Mercime, I am doing my upmost to stick to my guns with my Mum, it's not easy and I feel sort of cruel, but I know it is the best way. x
You are not being cruel, Carnation. Quite the opposite. Your mum needs to be treated like a toddler, with firm guidelines, or she will continue to try to control you. Older people can be so manipulative, but you can be strong.
I can't believe you've had such a dreadful week. Just remember this time will pass and at some stage you and Mr C will have time for yourselves again, knowing you have done everything you possibly could for your mums.
I did laugh at your Mr C and his ties, especially as he doesn't wear them! Does he display them like a work of art? My handbag is nothing special, bought on an impulse because the one I use every day has a hole in it. I'm not very big on material things.
How has your bank holiday been, Ladies? I planned on going to a local May fair but my stomach started playing up again and I did not fancy risking being too far from a toilet! It was raining anyway so I don't feel too bad about missing it.
Take care x
No, 23fish, he folds them neatly in to a box and then put's in the bottom the wardrobe; never to be seen again! :D
He used to be like this with gloves and before that it was scarves.
I think it is more of any obsession and his release from caring from his Mum.
Mr C's Mum is back home now. Very tired and her face is a picture from the fall 2 weeks ago. She wants egg, chips and beans for her dinner tonight and told us that she did not like the food in the home. They make the menu all fancy and then when it comes, it looks horrible. Bless her. :D
MyNameIsTerry
04-05-16, 07:46
I hate it when people have loud parties like that. Very inconsiderate as they keep people up all night. Revenge can be sweet with a VERY loud session with a lawn mower early morning though. :whistles:
The police just seem more interested in "keeping the peace" these days and that seems to have morphed into "not being arsed" a lot of the time or trying to have a jokey laugh with the wrongdoer rather than give them a rollocking. It's ridiculous, I suppose urinating in the street is only an issue for them when they have a TV camera on them in some city centre? :winks:
It doesn't surprise me, and I doubt any of us, that a great amount of your anxiety is caused by this situation and your mum. It's a lot of stress with little thanks for it and it has been upsetting you for a long time. Sadly, it's hard to know what to suggest with these situations as they are forced on people. I have a great relationship with my parents and they are the total opposite of this, my dad doesn't like anyone doing anything for him (pride I guess) and my mum has always been a doer anyway bringing the family up and working 2 part time jobs whilst my dad was working 6 (and even 7) day weeks to pay the bills (something I've pointed out to a few people I've worked with who moaned about bills & tax credits years ago). When mine time comes they will feel like a burden, they insist on doing anything & everything, it's just how they are.
23fish is right. You do need to be firm and it's a role reversal situation. Your dad did everything, she took his orders. Now she has to take them from you. Either that or she takes on more responsibility of she wants to be the alpha.
Does she have a pill box for the meds? GP's have them on mountains of the things and it can be easy to understand how they can get confused without some form of aid.
So, is taking MrC in a Tie Rack like taking a lot of women in a shoe shop? :winks: I guess everyone needs a fetish, erm, I mean hobby. :biggrin:
23fish - that's one off the list for the lottery win then! :yesyes: I think MrC needs a "man cave" for his ties. :biggrin: It's a shame you missed the fair, but I know what you mean, I just to be like that at work during the bad times and it's not pleasant. It's a shame though as you might have been able to tempt your son out for a bit, or is he too old for going out with mum & dad now? (is it no longer "cool"? Remember Kevin & Perry?!!! :biggrin:)
That made me laugh, Terry. My son is 16 and only ventures into the same room as me when he wants money or food! His brother, at 20, is showing signs of becoming a real person again and sometimes even makes conversation!
---------- Post added at 22:23 ---------- Previous post was at 18:35 ----------
Carnation, Mr C's collection is quite sweet really. It could be an awful lot worse (and cost a lot more money!)
It's good to hear Mr C's mum is home and enjoying home cooked food again. How is your mum today?
I hear so many stories from friends about the horrible way they are treated by their parents. It's like they revert to being toddlers and have tantrums if they don't get their own way. Hopefully knowing that others are going through the same will be a small comfort (although I know you wouldn't wish it on anyone else, I know).
Take care and keep that strength up x
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