Mum

[MyNameIsTerry]

Hi guys,

As some of you know, my mum has been very ill for a little over a month now.

She managed to battle her way out of the last infection and was discharged on Wednesday afternoon. Later that night she was struggling breathing and taken to A&E.

Before she was seen she suffered a seizure in my arms when I got up there which was a horrible experience leaving dad very upset. Once they had dealt with this she was quickly assessed to find she had hospital acquired pneumonia and possibly another infection. A senior doctor told me to make any calls to family quickly as she was very ill.

So my brother legged it down from Yorkshire overnight to be with her.

From the assessment they decided to keep giving oxygen, nebuliser treatment and antibiotics. We were then transferred to a respiratory ward as the doctors believed we needed oxygen at home despite her discharge previously not requiring it.

Very sadly the consultant has seen us today and advised antibiotics aren't doing much and mum is just too frail to keep fighting these infections off. So we had to decide whether to keep her in hospital, and move a bed into her room, or take her home. She wants to go home so that's what we are doing.

The doctor can't really say what time she has but he believes it is likely very short. She is medically ok to leave and we are just hoping the processes to move her to palliative care, and transport, won't mean that changes and we can't get her back.

I'm thankful my brother was here for this to help with dad as well as spend time with mum. We were up all night so he stayed at ours. It was an exhausting 24hrs in many ways. I just hope he can see her again yet as due to work he has had to go home ready for work and can't come back for 4 days. But realistically we know there is a chance that she will pass before this.

The doctor reassured us she won't be in pain, will have oxygen support and he believes she will likely just slip away. We are all praying that is the case and she can pass peacefully in her own home with us around her.

Naturally dad is in pieces. We knew it was getting near but hoped for more time at home first. I was hoping we could get her out in the garden for a last time but it's very unlikely now.

I'm keeping things together by getting on with things and keeping mum happy with the small things like applying cream to her legs and having a laugh. I showed her some pictures of our deceased dog which she enjoyed. But it hits me when I do things like this post and sometimes seeing her so vulnerable.

I thought it best to let you know as I've received a lot of very much appreciated support from some of you guys on here. It's hard to even type this but I wanted you to know.

All the best and thank you.


Terry

[BlueIris]

I'm so very sorry, Terry.

[Darksky]

What a very sad time for you Terry. I’m glad you have bought her home, although it’s going to be a very emotional time for you. However, she wanted to come home and you have granted her that wish.

All you can do is roll with your emotions. Nothing is wrong and nothing is right. Open her curtains wide and let her see the world. Bring her spring flowers for her room. Play her music that she likes. Talk as best you can about the past. I find it’s where they live. It’s where they are happiest.

Give your Dad a big hug from me and one for your mum as well.
If ever you want to talk, you know where I am.
Thinking of you and all your family.
xxxxxxx

[fishman65]

Terry, this is an incredibly moving post and from someone who has given much to many on this site. There won't be many life situations any more distressing than the one in which you find yourself.

Losing a loved one is something that defines us for the rest of our own lives. Know that being there for your Mum, talking to her, holding her, that's all we can really do isn't it. And she will know that at the end, that she has been loved.

Of course your Dad is going to be bereft, after many years of loving and living together, it will feel like a different universe for him. I can't imagine it, none can until we have lived it. All you can do is be there to listen, to talk about your Mum and his wife. That keeps her alive in your hearts. But all of us here on NMP will be listening too, OK mate? That's a certainty.

All the best buddy and keep on posting.

[MyNameIsTerry]

I'm so very sorry, Terry.

Thanks Blue, that means a lot and thank you for taking the time for me.

[Carnation]

I've private messaged you Terry.

[MyNameIsTerry]

What a very sad time for you Terry. I’m glad you have bought her home, although it’s going to be a very emotional time for you. However, she wanted to come home and you have granted her that wish.

All you can do is roll with your emotions. Nothing is wrong and nothing is right. Open her curtains wide and let her see the world. Bring her spring flowers for her room. Play her music that she likes. Talk as best you can about the past. I find it’s where they live. It’s where they are happiest.

Give your Dad a big hug from me and one for your mum as well.
If ever you want to talk, you know where I am.
Thinking of you and all your family.
xxxxxxx

Thanks Darksky, that's very kind of you. I really appreciate the offer too.

Nothing ever prepares you for this even if we knew it was getting close.

When she comes back she can see through the front window so hopefully she will get to see some birds, maybe the robin we always have. We can get some DVDs she likes and watch them together. The music is a good idea. She used to like Elton John and they have old records. ABBA was something they used to listen to.

She is doing well today. Plenty of drinking and even asked for bacon so she had a sub as there is a 24hr Subway here.

I'll give them a big hug for you.

[MyNameIsTerry]

I've private messaged you Terry.

Got it thanks, Carn. I'll message you back soon.

[MyNameIsTerry]

Terry, this is an incredibly moving post and from someone who has given much to many on this site. There won't be many life situations any more distressing than the one in which you find yourself.

Losing a loved one is something that defines us for the rest of our own lives. Know that being there for your Mum, talking to her, holding her, that's all we can really do isn't it. And she will know that at the end, that she has been loved.

Of course your Dad is going to be bereft, after many years of loving and living together, it will feel like a different universe for him. I can't imagine it, none can until we have lived it. All you can do is be there to listen, to talk about your Mum and his wife. That keeps her alive in your hearts. But all of us here on NMP will be listening too, OK mate? That's a certainty.

All the best buddy and keep on posting.

Thanks fishman, you've been through this very recently and it must be still very raw. So I really appreciate your kind words and insights.

You are absolutely right and this is incredibly hard. But everything has to be for and about mum now. I couldn't live with not doing as much as I can. Our concern was whether we could do what she needs to keep her pain free and breathing well. The consultant had no concerns with the palliative team involved. If it is best to be in hospital then its what's best for mum but otherwise we want her where she is most comfortable and the consultant agreed. If we had the opportunity and didn't get her home we would be failing her so dad is firm on this. Whatever I have to see is secondary to what mum needs from me and I've always told my brother this when he asked if we could cope watching her pass. I certainly don't want her passing on her own in hospital.

I know you will understand that because you did everything you could for your dad. Just the little things can be the most important when quality of life is low. Simple things like holding hands.

Mine have been married 60 years so this is absolutely massive for dad and it may take a very heavy toll on his remaining years. I don't know how he feels but it is such a massive change, a part of himself is going to leave with her.

[jojo2316]

I am so sorry Terry. I will be thinking of you over the coming days.

[Scass]

So sorry Terry.
You are doing everything you can for her at a time when nothing seems right or fair. She will be warm and comfortable and surrounded by love from you all.

Sending love.

[Catkins]

Sending so much love through this incredibly tough time. Treasure the good moments you have and as said before, there is no right or wrong with how you feel.

[pulisa]

I do so hope you are able to bring your Mum home, Terry and that the palliative care team do their very best to make this happen. I'm so very sorry but words are never enough when your world is about to change....You have given and continue to give your all to your Mum xxx

[MyNameIsTerry]

I am so sorry Terry. I will be thinking of you over the coming days.

Thanks jojo, I really appreciate your thoughts and especially when you are struggling too.

[MyNameIsTerry]

So sorry Terry.
You are doing everything you can for her at a time when nothing seems right or fair. She will be warm and comfortable and surrounded by love from you all.

Sending love.

Thanks Scass, I really appreciate your kind words.

Yes, it's the simple things now. Just giving her attention whether its hand holding or making her toenails more comfortable under the blankets gives her something she needs.

[MyNameIsTerry]

Sending so much love through this incredibly tough time. Treasure the good moments you have and as said before, there is no right or wrong with how you feel.

Thanks Catkins, I really appreciate that.

There are certainly still good moments. She is drinking well and trying to eat, is alert and asking for things.

Thankfully she isn't in much pain and her breathing is good. The mucus is bothering her but there are other things they are going to try to help that.

[MyNameIsTerry]

I do so hope you are able to bring your Mum home, Terry and that the palliative care team do their very best to make this happen. I'm so very sorry but words are never enough when your world is about to change....You have given and continue to give your all to your Mum xxx

Thanks pulisa, you've been where I'm going, like many on here, so I will always appreciate any advice and support.

Since mum is in a private room, and it's a big one, they arranged a z bed last night so dad can stay with her. We think this is best until she comes home, for both of them really as dad will feel like he is doing something and has less time to worry than at home.

The doctors have arranged the med package and a palliative nurse has seen us and fed back to them. Today another doctor advised it wont be tomorrow though.

[pulisa]

Thanks pulisa, you've been where I'm going, like many on here, so I will always appreciate any advice and support.

Since mum is in a private room, and it's a big one, they arranged a z bed last night so dad can stay with her. We think this is best until she comes home, for both of them really as dad will feel like he is doing something and has less time to worry than at home.

The doctors have arranged the med package and a palliative nurse has seen us and fed back to them. Today another doctor advised it wont be tomorrow though.

I know you want her home as soon as possible but this does sound a reasonable compromise until the care package is up and running effectively and reliably. She and your Dad have their privacy now and he'll be on hand and feel needed when he must have been feeling completely bereft and helpless on a busy ward?

I'm glad that she's got an appetite and is in relative good spirits. Let's hope that she'll be able to go home on Monday..Get some rest now if you can, Terry? You must be completely depleted both mentally and physically..quite understandably. xxx

[.Poppy.]

I am so sorry, Terry, I’ll be thinking of you.

[MyNameIsTerry]

I am so sorry, Terry, I’ll be thinking of you.

Thank you for caring, Poppy. It means a lot to me.

[MyNameIsTerry]

I know you want her home as soon as possible but this does sound a reasonable compromise until the care package is up and running effectively and reliably. She and your Dad have their privacy now and he'll be on hand and feel needed when he must have been feeling completely bereft and helpless on a busy ward?

I'm glad that she's got an appetite and is in relative good spirits. Let's hope that she'll be able to go home on Monday..Get some rest now if you can, Terry? You must be completely depleted both mentally and physically..quite understandably. xxx

Yes, the consultant said if we didn't feel we could manage at home they could do this. It was why we thought time was very short, otherwise a hospice would be needed, but its best we don't read too far into that since he may have discussed that next. So he must have told the nurses to get one anyway.

Its definitely helping dad, he has always felt guilty leaving her at night.

Yes, it has been catching up on me over the past week and to then be up 48hrs it has worn us all out.

She is drinking loads and asking for food so those are good signs. She slept well last night after a rough one the night before.

She has always been a battler.

[JulieJay92]

thinking of you terry, im pretty quiet on here now but if you ever need to talk im here, i work in a dementia care home and we also care for pallitive and end of life residents so i know only too well what you must be going through xx

[LadyVee]

I'm sorry about your mum Terry. I wanted to thank you also as you've been so helpful to so many people on here over the years.

[MyNameIsTerry]

Hopefully mum is coming home tomorrow. It should have been today but the oxygen team said it wasn't needed so we have to speak to the consultant, the second one, who said no problem. The nurse testing for the oxygen team told us consultants can't do it so we had to push back. :wall:

She has has two good days where she seems happy, alert, drinking plenty and even choosing new foods. Today she is tired and off her food but later she may pick up.

[MyNameIsTerry]

I'm sorry about your mum Terry. I wanted to thank you also as you've been so helpful to so many people on here over the years.

Thanks for your kind words, LadyVee. I really appreciate you stopping by. Just glad if I helped anyone, there is always something to learn on here.

[MyNameIsTerry]

thinking of you terry, im pretty quiet on here now but if you ever need to talk im here, i work in a dementia care home and we also care for pallitive and end of life residents so i know only too well what you must be going through xx

Thanks JulieJay, I remember you were forever beating me in the arcade!

Thanks, I really appreciate the kind offer. You do a very hard job and must have a lot of important experience in dealing with these conditions. Thankfully many on the wards are familiar with the behaviours that just come with dementia. It has been a very difficult experience for us but I wouldn't hesitate to do it again.

[pulisa]

I sincerely hope she is able to come home tomorrow with everything in place that is needed. You don't need any more complications or hold ups but they seem to be part of the hospital discharge process sadly..

She will be so relieved to get home where she belongs and away from all the hassle and noise of a hospital ward. You are a very special son, Terry and I've no doubt that your mum will have the very best of care and love from you and your Dad. Try to get some rest tonight though...You must be shattered xx

[fishman65]

I echo what's been said here Terry. The politics in the hospital are hardly helpful in what is already a very taxing time for you. And everything said above is true about you. Your Mum and Dad are very lucky in having such a dedicated and caring son.

Keep posting here as and when you need to, we're listening. Take care mate.

[MyNameIsTerry]

Thanks pulisa and fishman, it's a challenging time. We may not have told her but she knows she is passing and asks. The last two days she has been chatty so there have been a few conversations about what she wants and how we support whatever she decides. It upsets dad but me and my brother are more able to tell her if she wants to pass we will be here.

Thank you again for all your kind wishes and support.

[swgrl09]

Hi Terry,

Been more of a lurker these days and in and out sporadically. But you were a very big support to me during a tough time in my life years back. I am so sorry you are going through this. It sounds like you and your family are doing an amazing job supporting your mother and giving her the reassurance and love she needs during this difficult time. Sending hugs across the atlantic.

[Darksky]

I hope she does come home tomorrow. To have her own stuff around her and being in her own house will be a boost to her, however gentle it will be there. Hospital discharge is a nightmare. They say you can go and proceed to keep you in another 3 hours. It will happen though.

Anytime you want to post don’t hesitate. We are all here for you and all your family.

[Catkins]

Hope all goes well today Terry.

[Scass]

Thinking of you Terry.

[MyNameIsTerry]

Thanks guys, I always appreciate your kindness and advice.

Sadly it all went wrong today in a 'left hand right hand' way. Mum is back on oxygen, despite the oxygen team previously saying there was no need, and the oxygen was apparently booked for tomorrow. So the deputy ward manager advised it was best to stay otherwise she may struggle overnight.

That sounds reasonable and was our decision yesterday when the consultant asked if we wanted to go but then...

...we get handed a number to call the medical company who tell me they tried to deliver. No phone call before to make sure we are in. If they had we could have come home today. The discharge coordinator new nothing about it.

Tomorrow will be day 8 since we agreed with the consultant to take her home. FFS.

[fishman65]

Terry, this all sounds very familiar to me. The times we had this kind of scenario with Dad. 'He's ready to go home' followed by 'he's been moved to ward X' etc. He was moved to a rehab unit, a frail 94 year old when the users at that unit were all in their 60s or 70s. How much can you rehabilitate a 94 year old?

And that place lost his false teeth, we never did get them back. Like you say, no coordination between different departments. And there you are with your Mum still in hospital 8 days on, its ridiculous.

Hang in there mate, we're all on your side.

[pulisa]

Absolutely appalling mess for you but par for the course re discharge. It really shouldn't be like this but the reality is that you have to suffer as a family as a result of lack of communication and common sense. As for "lost property"...amazing how much stuff gets "mislaid" in a restricted environment.

I'd say yes to everything that is offered for you to have at home for her. To cover all eventualities. You don't want her readmitted.

Hoping for good news tomorrow, Terry. You're doing all you can..It must make you so angry.

[Darksky]

None of this surprises me in the least. As you say, left hand, right hand. My mother has a district nurse twice a week ( if she’s lucky) and there’s no continuity between them. One undoes what the previous one did.

I agree with Pulisa, say yes to everything. We had the most ridiculous amount of kit sent home for her. Half of it she ended up not needing and we sent it back but until we got her into a routine and worked out what was required we were grateful for it.

i do hope this gets resolved soon for you. It must be doing your head in, at an already difficult time.

[MyNameIsTerry]

Yes, we always make sure we leave nothing of value and pack everything ourselves. Last time the ambulance crew lost her teddy bear on the way home.

Well, after a whole load of disorganization we did make it home Friday night. Mum was relaxed with me there and had a really good night. She was smiling, happy, chatty. She drank plenty, even ate a small meal of cheese on toast (not had that since being in) and we watched some films together.

I got the oxygen sorted and because the gas fire is too close dad had to run around to get a convector heater.

Mum has been very sleepy but mostly peaceful since. She is drinking but not eating. She says she will have something later though and we don't want to push her now.

We have used the oxygen a few times because her readings were low and some behaviours showed. Last night she started grabbing for me, just like before the seizure at the hospital, so we quickly got her stabilised. If we didn't have oxygen we would already be back in A&E. It angers me that a 30 minute test by the oxygen team is considered an appropriate test for someone with a history of slow drops over days. Lazy staff.

Prior to getting home no one explained the nebuliser schedule so I chased that up. I got the runaround from one doctor passing it to the nurse and vice versa but got there in the end. I asked whether being on oxygen 2 days meant it was needed more now but the nurse couldn't find a record of who or why it had started, couldn't explain it and said ask the district nurse to monitor. Basically passing the buck.

The ambulance turned up to find no Respect form (has to be with the patient), discharge letter and report for the district nurse ready. By that time the meds were ready but not properly explained. The ambulance crew had to wait and weren't impressed. They checked the paperwork as the lack of organisation made they wary of things being missing.

It shouldn't be like this. Dad on his own would have struggled to keep on top of them all. Imagine old folks with no one?

The district nurse turned up yesterday when my brother was visiting. The hospital said they asked for Monday, the district nurse said she was booked for next day. She was very helpful.

[Carnation]

I know I haven't said much on this thread but I am thinking of you Terry. It's all so familiar hearing your woes and I think you are doing incredibly well under the circumstances.

[pulisa]

I'm glad the district nurse was helpful and prompt to visit. No it shouldn't be like this at a time of high stress for you all but it's sadly a familiar pattern of disjointed admin, poor quality staff and no common sense.

It must be very challenging for you with all the new equipment and developing a routine whilst being permanently alert for any red flags. I hope she sleeps well tonight and remains calm and stable xx

[MyNameIsTerry]

Thanks, Carn. I know you are around if I need you. :hugs: I remember all the mess you has to plough through to get things done that should have come naturally to them.

I said to my GF it's not like the old saying about pulling teeth. It's more like pulling them, putting them back in then pulling them out again.

Thanks, pulisa. Yes, she was really helpful. She had been here a few years ago when mums legs started off and is a relative of one of mum's old work mates.

I think we are on top of oxygen monitoring but still finding our feet fitting the nebuliser treatment in (not that the hospital did it 4 times a day...:whistles:). She hasn't needed more than 4 doses of oral morphine so far and has taken it really well. Earlier in her stay she would try to push it out.

I've shown dad how to do all the treatments and he is doing fine. Now the catheter is out we just need to keep on top of changes. I was surprised just how easy she passed water after it being in 6 months. Despite dad being a bit stressed over bed changes its mich better out to reduce infection risk.

Had to laugh when the ambulance crew asked if they could stretcher her in. I said no chance due to lack of space and they were a bit unwilling to take her using a chair. I reminded them we have steps, so you cant stretcher anyway, and the fact their own crew had no concerns using a chair the week before. They were very helpful and very nice after that. :winks:

[fishman65]

It's a comedy of errors Terry only nobody is laughing. Our hospital's CQC report is a long list of 'room for improvement' with a few 'good' and one inadequate. Which is better than the last one.

At least you're home now. You're doing a brilliant job. Look after each other and keep talking to us here.

[MyNameIsTerry]

Cheers, fishman. Like my brother was saying no one follows the process end to end so you get service gaps.

I've not checked the report for ours but I bet it's the same. It was better years ago.

[MyNameIsTerry]

Hi Terry,

Been more of a lurker these days and in and out sporadically. But you were a very big support to me during a tough time in my life years back. I am so sorry you are going through this. It sounds like you and your family are doing an amazing job supporting your mother and giving her the reassurance and love she needs during this difficult time. Sending hugs across the atlantic.

Thanks swgl, I really appreciate your kind words and support. I'm glad if I've helped you in any say in the past. I've always found you are such a lovely person and I'm sure many of us miss you.

[Carnation]

Deleted

[Catkins]

Thinking of you Terry, it must be tough.

[MyNameIsTerry]

Thanks, Catkins. I really appreciate your kind thoughts.

It is tough watching her go through this and being so limited to be able to help her.

[pulisa]

But you've managed to get her home where she wanted to be and she has you with her which must make her feel safe. You may feel restricted in what you can do for her but what you are doing is really significant and completely the right thing for her. Nurses may be able to come and go regularly but you are the ones who are really nurturing her and giving her comfort.

[Darksky]

But you've managed to get her home where she wanted to be and she has you with her which must make her feel safe. You may feel restricted in what you can do for her but what you are doing is really significant and completely the right thing for her. Nurses may be able to come and go regularly but you are the ones who are really nurturing her and giving her comfort.

^^^^^
This.
I know from experience that what you, your brother and your dad give to your mother at this time will be valued above all the medical people that come and go

My mother has carers and district nurses popping in and out every day. Now and again a podiatrist will come. But they mean nothing to her. Yes she’s grateful she has medical support but the day to day stuff my sister provides…. meals, company etc she values far more than anything they do. You may think you’re limited and medically maybe you are but the family are her world and she wants you around her. You are doing the most fantastic job.

[MyNameIsTerry]

Hi guys,

I just wanted to let you know that mum passed away this afternoon. She had started to have problems breathing, swallowing and talking.

She just went to sleep holding hands with dad and me sitting in the room.

A very sad day but I'm glad she is at peace and didn't continue to suffer the final stages in distress.

Thanks for all your support over the last weeks.

For you, mum :flowers: Thank you so much for everything you have done for me. Anything good in me is there because you put it there. I hope I did everything you needed me to and you knew just how much you have always been loved. You will never be forgotten because I'm what you made me so a part of you will always be here. Time for you to sleep knowing we will look after dad as you asked us too.

All my love, your ever loving son.


Terry xxx

[Carnation]

My thoughts are with you Terry :hugs:

[.Poppy.]

I'm sorry, Terry. She was incredibly lucky to have you all, as you were lucky to have her. I'll be thinking of you.

[fishman65]

Terry, I'm so very sorry. That's a beautiful tribute you've written to your Mum. And yes you're right in that she made you from herself. I think I can feel your pain quite keenly right now.

Of course, you and your Dad will feel this loss so deeply. But hopefully us here can offer you a degree of comfort. Much love and keep talking to us.

PS - I'm sorry I haven't posted sooner, I've been getting 'bad gateway' all day and couldn't post.

[Darksky]

I am so very sorry Terry. Really I am.

Take comfort in that she is at peace now. Nothing else will ever hurt her.

We are all here for continuing support when you need it.
:hugs:For you, your brother and your dad. Xxxx

[pulisa]

You got her home where she most wanted to be and she passed peacefully with her loved ones by her side supporting her. You won't get much consolation from this at the moment obviously but you fulfilled her final wish which was so important to her. You couldn't have done more for her when she most needed you.

I am so very sorry, Terry xxx

[JulieJay92]

thinking of you and all the family xxx

[glassgirlw]

So sorry for your loss Terry. I lost my mom in November after a long battle with pulmonary fibrosis. So I’m well aware of how hard it is to watch a loved one try to breathe and fail…constantly monitoring oxygen, and dealing with hospice. Probably one of the hardest things I’ve ever done. I feel for you. I still struggle with mom not being here so I guess I’m not quite to the next stage of grieving yet. I pray that you and your dad, brother, and other family members find some semblance of peace and comfort knowing that she’s no longer struggling every day. It’s easy to say but so, so much harder to live it. Thinking of you guys.

[Catkins]

So sorry for your loss Terry, sending much love your way.

[Scass]

Terry, you all did your best to make your Mum as comfortable and loved as possible. I’m so very sorry for your loss.
We are here.

[jojo2316]

What a beautiful tribute Terry. Your mum was surrounded by love. But her loss must be overwhelming. You are in my thoughts

[nomorepanic]

so sorry for your loss Terry - thinking of you all at this terrible time

[swgrl09]

For you, mum :flowers: Thank you so much for everything you have done for me. Anything good in me is there because you put it there.

Terry, words are not enough. I am so sorry that you and your family have lost her and gone through this, but wanted to highlight what you said. She must have been pretty phenomenal, because you are a wonderful person.

Be kind to yourself in the coming days, weeks, and months ahead. :hugs:

[fishman65]

Still thinking of you Terry...

[Scissel]

I'm sorry for your loss. I noticed you weren't here and was already thinking of you.