View Full Version : hugs
All the hugs for Pulisa.
:bighug1:
Has something happened to pulisa? I truly hope not or is this just a general :bighug1: as she is always here to help others?
Here's one from me :bighug1:
I was just going to ask that Matt :unsure:
:hugs:
LouiseAndy
01-11-19, 18:39
Sending lots of positive thoughts and hugs your way Pulisa x I hope everything is okay :hugs::flowers:
I’ve always got hugs for Pulisa. I hope you’re ok lovely xx
Thinking of you Pulisa x :hugs:
MyNameIsTerry
02-11-19, 02:25
:hugs: and some :flowers: for pulisa. I hope everything is ok for you and your family x
Thank you so much to everyone xxx
I don't really want to say too much but it's about my son who is now being seen by the crisis team on a daily basis. Things got as bad as they could have but I can't fault the access he has to NHS acute mental health care.
I can't really believe this is happening but have to. At least I can understand the torment.
Thank you again xxxxx
Oh my Pulisa, you've certainly had a bucketful this year.
Sending you more hugs :bighug1:
Bless you Pulisa. You will find strength to get through this. We have an inner core of steel that serves us when we need it.
Sending you huge hugs and extra ones for your son too.:bighug1:
I’m really pleased your son is getting help. I will be thinking of you with lots of love xx
I really appreciate all the support but just wanted to say that it's probably best for me to stay away from here until things are better. I certainly don't want to trigger anyone because we are all vulnerable. It's been an awful year. My son will eventually be discharged back to the community mental health team provided I can keep him safe. It's a huge responsibility but I will make sure he gets better.
xxx
BUddy, I had no idea at all, and I'm so so sorry to hear of this struggle. You know you can email me if ever you want !
MyNameIsTerry
03-11-19, 03:14
Really sorry to hear your son is having a very bad time, pulisa :hugs: A huge responsibility but I think that's been the story of your life and you always handle it.
I wouldn't worry about triggering others on here, they can click the x and avoid a thread, this is about you so if you need to then talk without feeling guilty about it because I'm sure we would all agree all that matters her is you & and your family. But totally up to you and if you need distance, that's best for you.
Oh Pulisa, while I don't know the whole story- I just want to say I have recently been through something like your son. My Mother was a wonderful support, you are such a lovely person. You are truly so kind and giving, I know this will be hard but sending very single possible thought and wish your way xxx :hugs:
You are all very kind and supportive but the truth is that I am out of my depth here and am struggling to see how I can cope and juggle both my children's needs. I'll have to find a way somehow and it's early days. He starts new meds today so must stay hopeful!!
Thank you all so much xxx
Oh pulisa,we are in this together.:bighug1:
It IS a huge responsibility Pulisa, but I have no doubts about your capabilities, especially knowing what you have been through knowing you for the last five years plus. It never seems to stop does it? The challenges, the worries, the pain. And you can't help but wonder why some people go through life plain sailing with not a worry in the world.
It's a challenge Pulisa. Just look at it like that. You are good at challenges, despite what you say about not being as strong as people think you are.
Don't bottle up your emotions, let them out. If you are angry, then go and thump a pillow or let out a long Grrrrrrrr and if you need to have a moment of a few tears, just watch 'The Pride of Britain' on this week.
What I'm trying to say is although your attention is on your son and your daughter as well, take time to deal with your emotions too. If you feel you are alone then pop on this thread to pick up a hug or two or lean on our shoulders.
Without the support on here, I wouldn't achieve half of what I do. So be kind to yourself and allow others to help you:hugs: x
Thank you Carnation. I'm not feeling very capable at the moment. I just can't concentrate or sit still for long- I'm used to living with this but it's worse now. I think it's to be expected though in view of everything xx
Pulisa, I think you've got to expect to feel agitated and restless. Your body and mind is on the ready for action.
You have a situation which seems presently out of your control, but at the same time you are very much involved in the process.
Personally I think you need to vent as much as you need on this thread. You need support and comfort and maybe a little advice here and there.
You don't have to suffer alone.
Try to keep your normal routine as much as you can, make some plans for Christmas to keep the positivity going and the moments you have to yourself find some good things to watch on tv or surf YouTube for calming Apps before you go to bed. x :hugs:
You will need strength, tenacity and fortitude - characteristics you possess, Dear Cmrd P. But there is also only so much within your own control.
I really hope for the best and you always know where I am if needed.
Sending much love :D
You are right in that I can't control how things will go and it's all very unpredictable at this stage, KK. I can only try my best to keep him safe but ultimately I have no say in the matter. I can only hope that things will get better. Thanks so much for your support xx
Carnation, I know how important my own routine is to me and how little things matter. I couldn't survive without having these as a support when times are tough xx
A very tough day today and crisis team and newly allocated CPN coming tomorrow. It's ironic that my son now has access to the CMHT whereas my daughter has zilch input because she falls between special needs and mainstream services. Good job they don't know about my demons!!:)
Yes, might be wise to keep your demons under wraps for the time being. Tough days are just that, but they pass. Although you have another one tomorrow, it seems to be moving fast so that at least is a good thing.
I expect there's alot of pacing and agitated status, but at least you don't have to wait until next week or month for that matter.
I know it's difficult, but try to keep positive. x
Yes I know it's a good thing that things are happening quickly and it's reassuring to know that acute care services really are acute when needed.
I'm certainly not going to mention my own issues-they wouldn't be interested anyway. Every day is a major challenge at the moment but I'm still standing!:)
If Elton John can do it, you can too Pulisa. x
Hi Pulisa, I don’t have much to offer right now but thinking of you , the feeling of being out of control with your family is the worst , you will find the strength to get him through as you have before .
Take care :bighug1:
:bighug1:Keep standing pulisa, I just heard that song,Always look on the Bright Side of Life.Xxx
Delilah001
08-11-19, 03:05
Sending you love pulisa❤❤
Hope things make a swift change very soon.
Hope you’re doing as well as can be. And that your son is receiving the best of care x
Thank you for all these kind and supportive messages. Tough times but things will get easier in time xx
Pulisa, maybe you should have 'I'm still standing' as your new ringtone? :winks:
Pulisa is made of stern stuff, and I have no doubt that she will come through this just fine. Overriding all of her own personal 'glitches' is the strongest of maternal bonds, the strongest of ethical/moral care for those struggling and an unequalled ability to keep on putting those she loves first. In time, I hope you have time to sit back and care for you P. (I feel like I've just written a school report for you P, but I wanted to say it).
Agent P has the highest level of agent training an agent could wish for and actually runs our Agents for Dummies course :wacko:
I think I might enrol for a refresher course in that, KK!:D My interrogation resistance skillz are still pretty ace though-years of practice!
Thank you so much for my "school report", Carys-best one I've ever had!! I have given them both such a crappy genetic "gift" so it's up to me to go all out to make things better for them if I can xx
Just checking to see how you are doing Pulisa
Maybe out of sight, but not out of mind. x
That's very kind of you, Carnation. To be honest I'm completely knackered trying to guide my son through the horrors of a new med with severe anxiety and depression and keeping my daughter away from the worst of it which terrifies the life out of her. So far I'm failing with my son but keeping my daughter just about going. I suspect my son may have a form of PTSD which is keeping him locked in a time which still is intensely painful and traumatic for him many months after the event but I don't want to underplay true PTSD.
I haven't forgotten it's nearly your birthday though.....:Dxx
I think you were under no illusions that it was going to be an easy journey Pulisa. Its the beginning of the journey and in my opinion, the hardest bit. You have such a large plate of responsibility and at this point it is not failure, although you may think it is. For one thing, you are there and that goes a long way to someone suffering. PTSD is very complexed, but it's curable. As we already know anxiety and depression is a very different story, but we do know it is manageable. Obviously everything I have just said will have no bearing on what you are feeling and going through, but as we've said many times to others, you have to take one step at a time. But please take moments for yourself when you can and don't beat yourself up with guilt and worry. Life can certainly deal a bad hand, but it can also change. x :hugs:
Birthdays after a certain age are played down now Pulisa :winks:
MyNameIsTerry
14-11-19, 01:49
That's very kind of you, Carnation. To be honest I'm completely knackered trying to guide my son through the horrors of a new med with severe anxiety and depression and keeping my daughter away from the worst of it which terrifies the life out of her. So far I'm failing with my son but keeping my daughter just about going. I suspect my son may have a form of PTSD which is keeping him locked in a time which still is intensely painful and traumatic for him many months after the event but I don't want to underplay true PTSD.
I haven't forgotten it's nearly your birthday though.....:Dxx
Like any good parent you want to sort it, to take it away. Would any parent be any different in your situation though? Sure, you have your own battles to work through but we all know you well enough to know you will keep that away from them and allow it out later once the things you need to do for others are done. So, it's very emotionally draining for you having to do that but in terms of what you do for your son I can't see how any parent would be able to do any different? You may face more challenges than them in getting things sorted if that's how your anxiety affects you but you have proven many times you will push through it because it matters more that the loved one is getting what is needed.
I hope he is feeling more settled soon and you all can have a breather from what must be a very hard time. :hugs::flowers:
BIB - neither have I :yesyes:
Thank you so much Carnation and Terry. Somehow I have to give him a reason to want to carry on living when he is constantly tormented by a past traumatic event which has destroyed his routine and his hopes for the future. Having ASD complicates things as we all see so much on here with other posters. Keeping him safe will be my biggest challenge ever xxx
The obvious reason to carry on is the future and what can seem like a dark pit with no way out in the present can turn in to a much brighter picture.
My uncle was diagnosed with schizophrenia and spent many years living in his bedroom in his 30s. He also suffered with PTSD. Once he was on the right medication, his life turned around, he met someone, moved in with them and was very happy. The lady in question became his carer and they travelled the world.
It must sound very airy fairy to you, but despite your son's demons and situation, you need to keep that dream aspect, for you too. x
Our purpose in life is to look after others, you've certainly being doing that multitude Pulisa. And it must wear you down. Please get your support on here. I know it just words, but offloading and knowing there is a voice that understands and can give you comfort can go a long way. xx
I know it can, Carnation and thank you so much for your kindness and message of hope. Yesterday brought another distressing incident but he's safe now. We're all still standing!:) xxx
Sending you :bighug1:because I can x:winks:
:bighug1: :bighug1: :bighug1:
I know it can, Carnation and thank you so much for your kindness and message of hope. Yesterday brought another distressing incident but he's safe now. We're all still standing!:) xxx
Huge hugs xx
Thank you so much. Have got some breathing space this evening so my daughter and I are going to watch Danny Dire's (sic) effort "The Wall" this evening. Apologies to all those who like him!:D xxx
Cor Blimey Pulisa, eel only get on yer nerves with all that dog and bone and me ol china. :D
It's such utter shite but annoyingly watchable when yer brains av turned ter mush, baby..
Waw...Drop it..
We get knocked down and we get up again eh Pulisa , keep getting back up , and if all else fails get down the that supermarket and chuck some fruit and veg at a queue jumper :bighug1: OI OI !
It's such utter shite but annoyingly watchable when yer brains av turned ter mush, baby..
Waw...Drop it..
I will have to confine you to the de-mushing chamber for 24 hrs to solidify your brain forthwith! That "Dire" man could even turn a compost heap into mush :lac:
MyNameIsTerry
17-11-19, 02:18
Careful pulisa or you will get Cockney Neck!
http://images2.fanpop.com/image/photos/11200000/itcrowd-the-it-crowd-11289629-983-1111.jpg
(hang on, Danny Dire is a "Mockney" isn't he? :whistles:)
https://gfycat.com/elaborateblackandwhitekingfisher
Lol, Dyer must have to practice regular to get that constant cockney patter going. I was born and raised in London but I don't remember my English lessons using Cockney as a subject. Maybe I'll get noticed more if I spat the cockney lingo which seems to be Oh so fashionable today. :ohmy: It's certainly made Dyer a household name. :shrug:
I battle with English at the best of times:D
:bighug1:For you pulisa xx:flowers:
My son is in hospital this evening. I cannot keep him safe 24/7 and am so relieved that he is being assessed again even though I doubt whether much can be done/
i am going all out to get him a PTSD assessment before the worst happens xxx
My son is in hospital this evening. I cannot keep him safe 24/7 and am so relieved that he is being assessed again even though I doubt whether much can be done/
i am going all out to get him a PTSD assessment before the worst happens xxx
Thinking of you both and hoping for positive outcome.
You're right: you can't keep him safe 24/7 - you can only be there when needed - and you do all you possibly can to make his life easier.
Nothing more can be expected from you, Cmrd.
My first reaction was, "Oh no" and then I thought this is actually the best situation for him and for you.
It must have been incredibly difficult and exhausting and more importantly your son will receive the 24hr watch and hopefully tests and assessments will proceed much quicker.
I know you will still worry, but there must be some relief and respite for you.
I'm so sorry you are having to go through all of this Pulisa, you really deserve a break. x :hugs:
Thank you, KK and Carnation.
He is being taken to a safe house for crisis and respite care this afternoon. I feel relieved because I can't cope with this.
xxx
I'm so sorry things are so hard for you right now, Pulisa, and I'm sorry I haven't been around as much as I should have.
Thinking of you, and hoping you'll be able to rest a little easier now.
Thinking of you right now Pulisa x
No one was expecting you to cope Pulisa, remember that. x :hugs:
Oh Pulisa it sounds like a really harrowing time for you all. I hope that the respite helps you all. You’re really doing the best you can, but you need rest too xx
Thank you. I know that this is the best thing for my son and for us all xxx
Thinking of you Pulisa :hugs:
It still can't be easy, no doubt you will be worrying x
I'm actually very relieved to have him being monitored away from home, Carnation. I never thought I would think this but I do now. He is back on Friday but I will just have to do my best. We will have the home treatment team coming in but it's not ideal. Thanks for the message though xx
No, it's not ideal Pulisa. I worry about the responsibility you will have and so soon. Whatever help is offered, take it! xx
The whole set up has been really poor. He's not had supervision with his meds so has not taken what he has been prescribed, I've had a shedload of phonecalls including in the early hours and the support workers are mostly abrupt and unhelpful. I don't know what to do next. Is there anything I can do? I don't think so.
I can't say I am surprised Pulisa. Help and support for mental health is disgraceful.
Can you contact 'Mind', at least for advice.
They have a pretty good reputation as far as I know and a powerful organisation.
The only other route is saying you are unable to look after your son, especially with your daughter's issues, but that could lead to a permanent situation of never having him back home permanently. And you might not be able to live with that decision as it stands at present. Obviously if the situation becomes out of hand and dangerous, then it's a scenario that might arise.
I would go with 'Mind' first and see what they say. x
Wish I was there pulisa.xx:flowers:
Oh Pulisa that’s shocking. I assume you’ve spoken with the manager there? Or does he have a support worker or team?
I hope it gets better soon x
I can't elaborate on what happened yesterday but it was every mother's worst nightmare.
I do need to take a break from here and wanted to explain my absence. I need to concentrate on my family and getting my son well again.
Take care everyone and thank you for all your support xxx
Support is here if you need it Pulisa x
I'm hoping that life will improve for you and your family :hugs:
:weep:Sending love your way:hugs:
LouiseAndy
23-11-19, 14:25
Sending lots of love your way xxx
I can't elaborate on what happened yesterday but it was every mother's worst nightmare.
I do need to take a break from here and wanted to explain my absence. I need to concentrate on my family and getting my son well again.
Take care everyone and thank you for all your support xxx
So sorry and thinking of you Cmrd P. Remember our motto of Never Surrender.
Sending positive thoughts and strength to get through this difficult time.
MyNameIsTerry
24-11-19, 02:20
You've got nothing to explain, think about yourself & your family and don't worry about us!
I doubt anyone can handle situations like this. The professionals have training and many people around them and they struggle. I'm sure you have and will always do whatever is necessary for your family and not allow your own issues to infringe on that.
Not been around much the last few days so just catching up and I'm really sorry to hear things are getting more difficult. I hope they get him settled as soon as possible and hope he isn't on some rollercoaster of meds knocking him all over the place.
We are here when you need us just as you are when we do. :hugs::flowers:
Violet Blue
24-11-19, 07:40
:bighug1:
Like everyone here, I am hoping for peace for you and your family very soon. xxxxx
Just wanted to say that my son was finally admitted to hospital as an inpatient today after a bitter but ultimately "successful" struggle with the home treatment team.
I don't expect anyone to comment any more but I do want to thank you all for your messages of support. It's made me reassess my own mild issues because I've experienced stuff in the last week which has been just dreadful but...despite all this I feel I can deal with this if I go on autopilot and soak it all up as an observer. It's all i can try at this stage xx
We are all thinking of you and your family, update if you can or even if you want to. I just wish you all the good things that you deserve Xx
MyNameIsTerry
26-11-19, 03:39
I'm glad to hear he is in a place where he can get get quicker access to doctors and you feel you can get more priority for him than with a home team.
You will deal with it all, we know enough about you to know nothing will ever get in the way of what needs to be done for your children :hugs::flowers:
It's times like this that you realise how incredibly hard life can be and puts everything into perspective. It's like walking in to a deep forest and being trapped there.
I can almost feel your emotional pain, but I can also feel your determination to find solutions and peace for everyone. Never doubt that you are a brilliant mum and everything you do is for the safety of your children.
That's important to remember. x
I doubt whether the home treatment team think that after what I have said but thank you, Carnation! xx
Quite frankly now i don't care what I say to anyone who is being a ****, MH "expert" or not!
Pulisa, we all have to say things to get things done in times of desperation. That's how you have to look at it and the bigger picture.
And more often than not you have to give the professionals some home truths whether they like it or not.
It's not a popularity contest, it's survival! xx
I know this a hard time, I was taken in as a inpatient myself a few months ago during the summer when I had a rather bad episode psychosis. I can't even image how my own Mam felt during that time- sorry for the mini story time about myself there lol . Just know so many of us here are ready to support you x Sending both you and your son the most love and support xxxx :hugs::flowers::hugs:
Absolutely! It's certainly time to be assertive and firm. I was on the same ward 20 years ago..It hasn't changed! xx
I know this a hard time, I was taken in as a inpatient myself a few months ago during the summer when I had a rather bad episode psychosis. I can't even image how my own Mam felt during that time- sorry for the mini story time about myself there lol . Just know so many of us here are ready to support you x Sending both you and your son the most love and support xxxx :hugs::flowers::hugs:
Thank you, Sarah. I really appreciate your kindness and good wishes. You know what it's like...but you have come out the other side! xxx
Thank you, Sarah. I really appreciate your kindness and good wishes. You know what it's like...but you have come out the other side! xxx
I've been in and out a few times over the years! It's a hard road- If I'm being honest I'm still recovering from it but I'm truly hoping your son gets the help he needs and deserve now! . I also hope you get some help also- which I know may not be easy during this time xx
I'm collateral damage in all this but that's ok because I'm used to it. I've done my bit by getting him heard. It's his first admission so a new "experience"-hopefully one which will be the beginning of the fight back xx
MyNameIsTerry
27-11-19, 02:13
You know better than most how you have to kick some of these services to get any priority, pulisa. You've beaten them before and will again.
Now he is in will it help your health a bit (I know like any parent you will be worrying all day about him) as you are less on alert all day?
Thank you. Pkstracy xx
Feeling terrible today but that's the result of things catching up with me and trying to support my traumatised daughter. She's sleeping now so I'm going out for a walk shortly to try to clear my head.
It's that feeling after the crescendo that leaves an aftermath in your life.
You will be full of ramped up emotions which are exhausting. And at this point you will not know of the outcome of the future.
This is a very hard time for you and these times probably never seem to stop coming.
I remember one time too vividly that sticks out in my mind.
I was out with my mum shopping and she collapsed in M & S and with the help of some very kind staff, managed to get her home as she refused to go to hospital. When we arrived back home I found my dad injured badly from a fall while we were out, so we all ended up in A & E. It wasn't long after that I had my car crash. You end up thinking, "geez (polite version), what's going on in my life? "
What I'm trying to say is, life is not being personal with you Pulisa, although it may seem like it.
It's a situation of life, challenging and disruption that can change!
You always make the right decisions, even if it hurts at the time. You do what you think is right and yes, it's a heavy cross to bear, so give yourself a break and tell yourself how brilliant you are! And never think you don't deserve words like that, you cope incredibly well under very difficult circumstances. xx
:bighug1:
Give your girl a hug from me and mine.Xxx
Sending love to you and your girl (and the boys). I hope the sun shines on you all soon xx
Thank you. We are all still standing and that's all we can do. Everything is very uncertain and every phone call brings a sense of panic but it's early days and a long road ahead. I am very worried about my daughter because she is terribly affected by this quite understandably because she has been unintentionally in the front line and can't deal with the aftermath. At least my son doesn't know xx
That's a difficult one Pulisa, because she probably doesn't forget easily. Time is the healer here and that's a long drag. Distraction unfortunately is only momentarily and explaining is probably impossible.
If only you could use a magic wand.
I really feel for you with what you are going through Pulisa. x
Perhaps she could do with some counselling or a doctor might be able to offer something more useful.
Christmas events could be a distraction, but difficult to get in to the spirit considering the current situation. x
She's always hated Christmas..Just like her Mother!!:D
She had a better day yesterday though which was a relief. I know she will be terrified when he is discharged but will just have to reassure her as much as I can. She finds it very hard to talk to therapists, Scass for fear of being "judged" but I will ask her GP about using short term diazepam. I think I need some too!! xx
Violet Blue
01-12-19, 08:45
Christmas events could be a district, but difficult to get in to the spirit considering the current situation. x
Oh dear, well of course Christmas is every anxiety sufferer's complete nightmare!!!!! But I do remember wonderful advice a few years ago when I was not well on NMP by someone who wrote on the 25th something like 'don't listen to the symptoms' and I do remember that being helpful.
Pulisa - yes, sounds good to ask for low dosages of something or other, anything to buy a bit of rest I would say. Bless K, hoping to lighten the mood (though probably failing) I remember you saying the panic she felt about having a new carpet in her bedroom! If that's what you're dealing with no one can possible really help you practically, though of course we are sending all good wishes on here. xxxx
Thank you, Violet xxx Yes her anxieties are on a different level so you can imagine the trauma she has suffered and will continue to suffer until things return to "normal". I will speak to her GP tomorrow because I won't let her mental health deteriorate any more than it has already.
She's always hated Christmas..Just like her Mother!!:D
She had a better day yesterday though which was a relief. I know she will be terrified when he is discharged but will just have to reassure her as much as I can. She finds it very hard to talk to therapists, Scass for fear of being "judged" but I will ask her GP about using short term diazepam. I think I need some too!! xx
I’m glad yesterday was better. One step at a time.
Sorry that she fears being judged, my heart goes out to her xx
Things are better and i really hope that he'll stay stable on new meds. There is a team meeting on Thursday to which I've been invited so hope to know more then xx
Good Pulisa. And in a short space of time.
You are wise enough to know that it's not going to be a quick fix, but you are going in the right direction. x
Violet Blue
03-12-19, 10:27
OUCH! You've just put what your son has done to himself!!! My heart goes out to him, such a tortured soul, I'm desperately hoping he feels better soon.
Plus reality check for the rest of us - that is the true face of what mental illness can do. :unsure:
xxx
Yes it's certainly a reality check for me.
MyNameIsTerry
07-12-19, 04:58
Time for a hug bump :hugs:
Pulisa, has your daughter settled now? x
Not really, Carnation.She is terrified that he is suddenly going to be discharged. Thanks for asking though xx
My son has had a bit of a setback over the past few days. I know it will be like this and I know what the trigger was. At least now he is in a safe place and I don't have that awful 24/7 responsibility.
Yes, I can understand your daughter will be worried about that Pulisa.
We know setbacks will occur, that's to be expected.
I have to say, I really don't know how you hold it altogether Pulisa, you are amazing! :hugs:
I'm terribly flawed, Carnation and am only doing what any parent would do but thank you xx
Another bad day but tomorrow will be better.
I'm terribly flawed, Carnation and am only doing what any parent would do but thank you xx
Another bad day but tomorrow will be better.
Then all parents are flawed as you can't do any more, Cmrd P.
I really hope the med switch will make a difference and I'm pleased they're making an effort to get him well again.
That's called being human Pulisa :hugs:
Just wanted to say I'm thinking of you both still x :hugs:
my son is now home but it's been so hard and I just haven't coped. I've got to get my act together and try and get some "normality" back.
The "intensive support" promised by the home treatment team following discharge has been a joke. You're on your own basically. My daughter's anxiety is markedly increased and it's not fair on her.
I've managed to arrange some private trauma therapy in jan for my son-the hospital here don't cover ASD and PTSD.
Sorry to be low-I'm knackered. Thanks so much for your continued support xxx
I was quite shocked to hear that your son is home already.
What possibly can be achieved in such a short space of time?
I think you've done the right thing in seeking private help, not that you should have to. But it looks like you'll have to scan for more outside help off your own back.
Have you tried MIND?
Try anything you come across, it's no time to try and do it all yourself.
And for yourself, you need help, support, a break.
Anything going, you take it!
If I was still living in your area, I'd be over helping you and giving you a break, but there are people that will help, it's just finding them.
Don't stay in the dark Pulisa, let us be on here to support you and remind you that there are people on here that care! xx
Theres also an organisation called 'Think Action', they might be worth a look. x
I hope you get some help Pulisa. Perhaps Mind is a good idea, at the very least they could signpost you to an organisation that offers the right kind of support.
I’m sure you don’t know where to turn, so I’m glad you can write your thoughts here if need be.
I think of you & your family often and am always wishing you all well x
my son is now home but it's been so hard and I just haven't coped. I've got to get my act together and try and get some "normality" back.
The "intensive support" promised by the home treatment team following discharge has been a joke. You're on your own basically. My daughter's anxiety is markedly increased and it's not fair on her.
I've managed to arrange some private trauma therapy in jan for my son-the hospital here don't cover ASD and PTSD.
Sorry to be low-I'm knackered. Thanks so much for your continued support xxx
Makes me angry that your son is expected to "cope" so early in his treatment/illness and family are left to pick up the pieces. Surely he deserves to be given supported living accommodation? How can you possibly cope with both your son's and daughter's needs, not to mention your own? It's too much for any parent.
Please look into support groups mentioned by Carn above and perhaps speak to son's MH team again because they can't simply abandon him like this.
Sending love and strength, Cmrd P.
Well technically he hasn't been abandoned by the MH services because he has been referred back to the CMHT (for what that's worth) but they don't offer the specialised therapy he needs (and they admit they don't). So I could push for a tertiary referral to the Maudsley which will have to go through the local CCG and will take months or I can pay. I've chosen to pay because of what has happened and because an appointment with the right psychologist will give my son hope and he desperately needs to have hope sooner rather than later which will be too late. I realise that I'm lucky to be able to afford to pay for a prompt appointment but tbh this could be treatment which will help my son to heal and it's essential that i give him this opportunity,
I think his ASD complicates things with standard support services such as MIND etc. He's already had the standard CBT/Mindfulness/Coping Strategies package which has proved ineffective. The addition of risperidone to the venlafaxine has helped with the suicidal element and he hasn't actively self-harmed for 5 days so the hosp stay has helped to implement and stabilise the meds but...urghhh trying to make the doctors understand how he functions has been a trial.
Thank you so much for your support. It helps to have a rant..I do feel I'm "losing it" but can only be grateful that my OCD keeps me going!:D xx
MyNameIsTerry
15-12-19, 15:14
I think from what you have told us of your journey through decades of "the system" for your kids you know inside out what it is like and, whilst it must be very demoralising, I suspect you had this in the back of your mind. Kick them, kick them and kick them somemore. These services so often discharge people back out and unless their is some form of advocate pushing them to keep up the work they seem to just forget about people.
Yes, all that matters here is health. Money doesn't. Whilst the NHS should deal with this you as a parent know what you all need without having to worry about the bigger picture of other patients and juggling it all so why not spend money to help him? This isn't some niggling minor thing for an elective op that can wait, this is crucial stuff and you know him better than any of them. If getting him to the right people sooner is what he needs, that's all that matters and we know on here that's what you will always do.
I don't know what to say about your own needs in this because it's such a big situation that you may not have time for them like other events you have seen in your life (your son's operations as a child must have taken over for life for ages, for instance) so perhaps all you can do is snatch the quick moments in between and keep pushing on? You will deal with it, I have every confidence in you from listening to the situations you have dealt with in your life.
Give yourself credit. This place is here when you need it for whatever small help we can offer whether it's a moan or a laugh.
Best wishes to you all x
whispershadow
15-12-19, 18:43
hugs pulisa :hugs:
I want to say I'm surprised they sent your son home so soon- but I'm not. They can try to get short-cuts which is so horrid. I can recall the first time I was taken in, the moment I stopped (TW-Self harm) trying to rip my hair out or clawing at my skin for just a day they handed me back over to my parents who were not at all ready at handle what came. Thinking of you during this time, I know it's so hard but from what I'm reading I can see how you're doing all you can for both of your kids- which can't be easy at all. Really keeping you all in my thoughts during this time xxx
Thank you Terry, Whisper and Sarah..xxx
I feel very much out of my depth with all this so it helps to know that your parents struggled too, Sarah. i really appreciate your comments and I'm sorry you had such an ordeal yourself. I'm used to living with agitation but my son isn't-hence the self harm and desperation. There aren't any answers but I could do without the ineptitude of the MH team. I should be used to it by now but dealing with all this with the obvious change in my son which sets alarm bells off with my daughter is a nightmare. I will make the most of short breaks in the day to recharge my own batteries which are pretty faulty!! xxx
Pulisa, I think you have to think of this as a phase in your son's life and everyone else's to some extent, rather than a permanent state. Although these conditions can be ongoing, once on the right treatment and medication it can make life manageable and better.
It must feel like your the only family suffering in this way, but the more you open up, the more you will find others have gone through the same thing.
I know it's cliche, but one step at a time. xx
Always here for you Pulisa, feel free to drop me dm at any time if you want x
Thank you Carnation and Sarah xxx
We are back to being on 24/7 alert. There is a meeting this afternoon and I'm going to be as forthright as I possibly can be regarding future care
MyNameIsTerry
18-12-19, 13:50
That sounds like he's struggling more again? Perhaps this will convince them it was too soon and he needs more dedicated support for a while?
You know if you hold back they will see it as an opportunity to leave it all with you so don't be afraid of telling them how hard this is on you all. I don't know how anyone could be any different.
That sounds like he's struggling more again? Perhaps this will convince them it was too soon and he needs more dedicated support for a while?
You know if you hold back they will see it as an opportunity to leave it all with you so don't be afraid of telling them how hard this is on you all. I don't know how anyone could be any different.
On the contrary he has been discharged into the care of the CMHT...but I did get to challenge every platitude uttered. It was uncomfortable but necessary as I felt eaten up by anger and I think we are better off without an ineffective team who don't understand ASD. Thank you, Terry x
You can achieve a lot with anger Pulisa :winks:
MyNameIsTerry
19-12-19, 02:39
Whatever works best for you, pulisa. The last thing you need is a bunch of numpties adding stress to it all through their incompetence. I take it they just look at it as another statistic and want to move in to the next then?
Are you getting support from your GP through this? They are notorious for stepping back once referred for anything and should be working harder as the primary care owner.
Yes, some well directed anger can put you in a very assertive mood.
The only thing that the GP is doing is issuing the script for meds which the Consultant at the hospital has prescribed. No other involvement at all. There's nothing really that can be done other than get through the hours somehow.
Thanks anyway for your responses. xx
Your situation is beyond a GP's capabilities.
They can direct you to a Web of information and outside help, but you can do that yourself.
It's one of those scenarios a GP will find too much of a responsibility to get too involved.
I think in your own experience you found them to be airheaded anyway Pulisa.
In my opinion, referring is their best ability.
Sending you more hugs :hugs: x
Yes I agree with you, Carnation. The easy option is for them to refer. At least I know it's pointless to go there for advice or help because they won't take responsibility. Same old story..
Gruelling day but it's nearly over..xx
Am getting through the hours, trying to shield my daughter from the worst of it. Not sure that the meds are doing anything after 3 weeks on ven 225mg and 2mg risperidone but it's "early days". Well yes, it's easy to say that as an onlooker but it feels like a century when you're under the cosh!
I can't imagine what your Christmas is going to be like Pulisa, but have an idea you'll just get on with stuff with as little fuss as possible. 3 weeks on meds is no time at all, but you know that. It's a matter of getting through each day with hopefully a better picture at the end of it.
I'm sure the films will help your daughter, but it must be so exhausting for you. :hugs: x
MyNameIsTerry
22-12-19, 14:08
The only thing that the GP is doing is issuing the script for meds which the Consultant at the hospital has prescribed. No other involvement at all. There's nothing really that can be done other than get through the hours somehow.
Thanks anyway for your responses. xx
That's one of the things about the NHS which annoys me. The GP is supposed to always be the primary care giver if you are not in say a hospital but they just refer off and sit back. You have to kick them to sort out other services who drag their heals. It just makes us all feel like a little number taking on a big machine.
I hope you all have some peach, quiet and stability this Christmas which is probably what you need more than most things right now x
Thank you, Carnation and Terry.
She's not into films but the soaps will be a godsend! I'd love some peace for Christmas but even in the best circumstances find it difficult. Possibly a slow drip feed of benzos would help or a general anaesthetic for the day.That would be perfect! :D xxx
There are plenty of soaps at Christmas to keep her mind busy!
Now we just need to keep you happy. Although I expect you’re only happy when your children are.
Xx
I haven't been happy for years, Scass but that's as a result of a long term mental health issue. I wish things were different, especially now xx
Hi Pulisa, did you manage to get through the festivities unscathed? x
Hello Carnation. It was an awful Christmas culminating in an emergency appointment with the community psychiatrist as a result of an incident this morning.
I just take it in my stride now and am on autopilot. It's the only way to cope xx
Oh my! :ohmy: there doesn't seem to be any let up for you Pulisa. You must be going about your day like a zombie.
I wonder if the medical professionals have any idea what it is like to live like that?
I wish there was more I could do to help you, but I'm always here to let off steam if you wish. x
I haven't been happy for years, Scass but that's as a result of a long term mental health issue. I wish things were different, especially now xx
I’m so sad to read that, and I’m really sorry that things are no better at home. Hoping for better days ahead for you all xx
Mrsmitchell1984
27-12-19, 19:19
Did the community psychiatrist help much Pulisa? I hope they did! Wishing you extra strength to keep you going through this xxxx
Thank you! Have resorted to diazepam for my sins but it's good stuff and this is certainly horrible stuff to deal with xx
Good grief I really do need to venture outside the handful of boards I frequent. I'm so sorry you've been through this nightmare pulisa. This sounds like an episode of Panorama. Don't ever think for one moment that you have failed as a parent, you have done everything humanly possible for your children. But in the face of inadequate support from the health services you've been left to fend for yourself. You hear about this so often, lots of positive talk in the media but the reality is different.
:hugs: For you because you've been there for me in the past. Thinking of you xx
Hi Pulisa, any improvement on your son's condition?
And how are you bearing up? x
Thank you both for your support xx
Another trip to A&E on Monday night and more home treatment team visits which are pretty pointless now. We continue to live on tenterhooks but it's become the norm now. 10 days to the private appointment with the ASD psychologist-at least Christmas is out the way.
Oh I do hope this appointment will be a success.
You certainly could do with seeing some progress and relief. Thinking of you in this most stressing time Pulisa. x
Thank you, Carnation xx Just got to take it a day at a time. I see that Silent Witness has a new series starting this week so that will be something to sky + and look forward to!! every little helps! xx
Hope you enjoying 'Silent Witness' Pulisa.
Another 5 days to the appointment, getting closer. :hugs:
Sorry, Pulisa, only saw this now. Thinking of you.
That's really kind of you both and thank you. Another trip to A&E last night after taking stuff he shouldn't. I'm at a loss at what to do but know I have that appointment next week. Fortunately he's out cold today after last night but we can't leave him obviously. Good to be able to contribute on here..God, i wouldn't have believed this could happen to him xx
Blimey Pulisa. And I bet the hospital don't even say, "you again". I really don't know how you cope, you are amazing! :hugs:
Not at all. I'm not coping at all and neither is anyone else. But we just have to cope somehow because local mental health community support is rubbish. It's ok for the basics but other than that you're on your own xx
Maybe I should have said, "how are you getting through the day?" And, "how do you get any sleep?"
Just being a carer is hard enough.
I do hope this private appointment will help. x
Hi Pulisa, I haven't been on in awhile but you and your son were always in my thoughts xx Sorry I don't have anything more to say- just I can truly understand how hard this is for the both of you right now and sending you so many positive thoughts xx
Thank you, Sarah..It is very good of you to think of me because I know just how badly you have suffered too . I do hope that things are improving for you but this is a terrible illness and it must be so hard for you to manage your own destructive thoughts xxx
We are on 24/7 alert here. Everything potentially dangerous has been removed and we live in constant fear of what will happen next. I just want to get him through to Tues and a potential lifeline. I fear for my daughter's mental health which has always been fragile and is now severely compromised by living in constant fear. I am hopeful that we will be able to see an ASD psychiatrist who is a colleague of the psychologist we are seeing on Tues.
Pulisa my heart goes out to you and your family.
So sad that you are being left to deal with this and of course there is no way that you cannot deal with it.
Keep posting on here if it helps you. People here care for you and want to support you in any way they can.
Take care of yourself as much as you can.
Elen
I just can’t fathom how you are left without support. I feel so desperately sorry for your children. And you of course dear Pulisa xx
I'm really sorry you are still going through this nightmare Pulisa. Both yourself and your family deserve so much better. Thinking of you :hugs:
Thank you so much for all the support and kindness. I'm sure tomorrow will bring some light at the end of the tunnel. It will be good to have contact with someone who understands ASD xxx
I'll be thinking of you tomorrow Pulisa x
Thanks, Carnation xx I hope Storm Brendan doesn't muck up the trains!
I'll be thinking of you too, Agt P, and hope you get much needed help and support, not to mention respite.
How did it go Pulisa?
I hope storm Brendan didn't take you captive. x
We are back in one piece!!
My son will start EMDR sessions very shortly on the understanding that he will not self harm/go even further which has been the pattern since October. Not sure how he can assure anyone of this but if he wants to get better he has to comply. He actually has a squint (convergent and divergent)-I was wondering how this would affect EMDR? Anyone know? xx
It's exposure therapy and I doubt whether a squint would effect that. He can see and that is the main thing.
EMDR can be very effective, although it's not a quick fix, but I think you are aware of that already.
The positive will be if your son agrees to not self harm, it's like making a deal. If he agrees, it will show he is willing to get the help he needs.
It must have been an exhausting day for you both and you had storm Brendan to deal with too.
Pleased you both back safely. xx
Thanks for the explanation, Carnation. I know nothing about EMDR (fortunately for me) but am pleased that my son will be getting this treatment from someone so specialised. It's not available on the NHS in our area so it will be expensive but it has to be tried at least xx
Glad you're both back and progress has been made - I'm really happy your son's willing to make an agreement like that in order to get the help he needs.
There's plenty on here about EMDR with good results.
No doubt you'll have a search and gather info from the real people that have gone through the same thing.
It's so disappointing that the NHS don't provide this for you when we are supposedly getting more support with mental health.
But it is what it is, so it has to be dealt with.
It's something to hope for, for your son and maybe now he's in the door, a relationship can be built and worked on.
Self harming is normally a cry for help and loathing of his state, so if he can feel there's something positive happening to relive that, then there's definitely light at the end of the tunnel. xx
Hope everything goes ok for tomorrow Pulisa x
It's actually next Tuesday, Carnation but thanks for the good wishes xx
Just as well Pulisa, bloomin freezin tomorrow.
Has EFT been mentioned for your son. I think it could be quite beneficial and it's something he could do by himself. x
No it hasn't yet. It would be an alternative to pulling his teeth out!:D
MyNameIsTerry
21-01-20, 17:42
It might be worth a go. EFT is supposed to be good for emotional relief so maybe it could be an outlet? The NHS was doing research into using it when I remember reading their proposed studies a couple of years ago (it was nurses recommending it's use in a clinical setting) but I haven't followed it up.
I think with all these alternative therapies if they bring comfort and relief then all well and good. I wouldn't pay anyone for EFT but it's a distraction and if it helps people then it doesn't matter if there's no medical back up for it. Bubble wrap popping helps both my children..pulling teeth out "helped" my son but obviously that was a tad extreme!! I suppose it's all about trying to concentrate on another activity and not being overwhelmed by negative thoughts but this is far from easy when you're severely under the cosh mentally of course.
You don't need a therapist for EFT. A therapist may explain or hand you a leaflet showing diagrams on what to do, but you can easily get this from a YouTube video. It's easy to remember and to a certain extent its prodding your body so it's a form of waking yourself up from things that are not reality. It can take as little as a few minutes to as long as you want and as many times as you want.
I use it a lot when I start to lose control.
It is not harmful and you can use this tool anywhere. xx
It's a bit like mindfulness then, I suppose. Something to slow the mind down as you concentrate on the exercise. Free and easy to apply!
Sometimes simple things are the best. I'm not a great fan of scientific explanations-just things that work!
Thanks, Carnation xx
MyNameIsTerry
24-01-20, 19:19
It's very easy to learn and use. It would be easily learned from online resources of a book as Carnation says. I know less about it than Carnation but creating set up statements and working through a routine of where you tap and why seems like a quicker to learn process. And to be honest he's probably not going to have much concentration right now with his mind do learning big stuff is probably not what he needs.
I think it's likely easier to learn than meditation since you don't just sit there and worry if you are doing it right. You can see if you are following instructions as opposed to trying to understand how something feels in your body. The outward nature of the tapping and feeling it are going to be a bit more concrete than visualising your breathing to start meditation.
If it upsets him, you can just stop and never do it again. Totally in your control and (Carnation will gave to advice more on this) it could be entered into using shorter periods or less areas of the body to get him comfortable with it if new stuff is triggering.
I think he would like the feel of the tapping so we will give it a go. i will suggest just limiting it to a couple of areas though to make things simple.
Thank you both very much xx
Pulisa, the tapping points are....
The forehead - above the nose and in between the eyebrows - use your middle finger for this one
On the cheekbones - directly underneath the eyes - use 3 fingers for this one tapping both sides.
Above the lip directly underneath the nose - use middle finger for this one
The chin - in the centre directly under the lips
The breastbone - just underneath on both sides - use 3 fingers and tap both sides at once.
The sides of the hands, pinky finger side and using the same area on the other, strike a chopping affect on the side. (I would start with this one first as it's easy and less conspicuous to do.
You do have to accompany all these actions with words either spoken or by thought and they have to be positive.
For example...
"I'm ok, no harm will come to me"
"I am safe"
"I am in Control"
"I will be ok"
"Any bad feeling will pass"
"I am well and safe"
"I am calm"
"nothing bad will happen to me"
You get the idea and people tailor what they say to suit their needs. And it works! :yesyes:
Let me know if you need any more info. xx
Thanks so much, Carnation. Will pass on this info and have a go myself! xx
Sometimes it will make you cry or feel tired after, but that is good because it is letting out the frustration and you are doing it properly.
Good to have a drink at the ready too, non alcoholic of course to replenish your liquids. xx
I actually really enjoy tapping! I use it as a type of self comfort during hard times x it can be a little hard to get into (I found that personal) but it's well worth the try xx
My son has got to have an echocardiogram as his ECG showed some abnormalities and he has tachycardia. He does have a hole in the heart anyway but the high dose venlafaxine could be making things worse.
Not looking forward to the prospect of having to get him off 300mg ven but mustn't get too far ahead of myself. They will compare the latest test to the previous echo done 2 years ago. Personally I don't think the ven has done anything and he'd be better off without it but what do I know? It's hard to see him as he is now but I think long term therapy will help. I really feel for my daughter who has no help but we are planning some things to do together later on this year.
Pulisa, if the ven was going to have any affect, it would have kicked in by now. And I understand to try something else there has to be a period of weening off and restarting another drug. Therapy and Tapping could help during that period.
A hole in the heart is far more common than people realise, I have one and only found out about it 15 years ago. So does the singer Jesse J. Don't let him think he is abnormal in anyway, quote a few people to him that have it that lead full lives, otherwise it will be another excuse to give up.
I think it's a really good idea to give your daughter some things to look forward to, and yourself.
It must feel like a dark cloud hanging over the household and anything you can think of to relieve that a bit, will help a little.
Don't forget about yourself Pulisa. xx
Just another point Pulisa, has asprin been recommended to thin the blood as a safety precaution?
He has no oesophagus, a missing kidney and various skeletal issues so the VSDs have never really troubled him fortunately. No suggestion about aspirin-I think he is having the echo just to check re hypertrophy of a ventricle which is normal with a VSD but may be made worse by the ven? It's a routine referral but he'll have it in 2-3 weeks supposedly. I'm more worried about getting him off ven if I need to..I've done all that with my daughter and it's not straightforward. I'd rather he came off meds altogether and stuck with the therapy but he's dealing with a lot in his life so it is probably not advisable
If the ven is doing no harm, maybe keep him on it a little longer. Until he's more settled into the therapy.
It can't be easy for you or your family.
I really hope there is a breakthrough somehow. xx
LouiseAndy
14-02-20, 19:34
Thinking of you and sending lots of positive thoughts ����
Thank you Scass, Carnation and Louise. We'll get through this because there is always a way xx
You do have an awful lot to deal with Pulisa, I have nothing but admiration for you. Isn't that the maximum dose for venlafaxine? Its the same dose I'm on but combined with mirtazapine it does keep any depression at bay for me. Wishing you all the best :hugs:
I think he can go up to 375mg? He's also on risperidone. His depression has been a reactive one so I'm unsure whether any ADs will help him much. The ASD just makes it harder to break through his mindset. Thanks for your good wishes, fishman.
My son has been sectioned and taken to hospital. At least he is safe for now and maybe someone will be able to help him.
Thinking of you and yours, Pulisa.
Oh bless Pulisa :hugs:x
Those words always sound so frightening to hear, but in the present circumstances, it is the only way he can be helped to recovery without the strain on yourself and your daughter. Emotions must be running high and I truly feel for you during a very difficult time. xx
MyNameIsTerry
18-02-20, 18:50
I'm sorry to hear this, pulisa. I hope he is also physically well and this has been a nasty scare that has brought it to a head.
This is something that always annoys me about mental health. Going in & out like this only proves a longer stay is best until he is truly ready. Would they do that in physical health? Unlikely.
Do you think he needs to come off the Ven because of this?
We are here if you need us. Take care of yourself and I hope your daughter is as settled as she can be too :hugs:
Oh Pulisa, I’m sorry that this has happened. I hope that every cloud has a silver lining, because you could really do with some x
I'm very sorry to hear this too Pulisa. What an awful time yourself and your family have had lately. Thinking of you all :hugs:
Thank you so much for all the kind words and support. I'm not really sure how things will progress or what the hell we do now. All in the hands of the Men/Women Who Guess (psychiatrists). He's on a different ward from last time with a different team so I'll just have to wait and see how things pan out.
In the meantime I've just got to try and pick up the pieces and carry on regardless. At least my daughter can relax her vigil now.
Sending you my thoughts as always Pulisa xx:hugs:
Thanks, Carnation xx
I am only posting to update people who have been kind enough to follow this thread. I know that there's not much you can say and I don't want to trigger anyone with details. I just feel as if I'm in a bit of a blur and am prepared for anything.
One thing I do know about you Pulisa is that you're a tough cookie. I realise that probably doesn't help but sometimes these things need to be said. Please look after yourself, this will all come right in the end :hugs:
Hi Pulisa , I don’t have any words of wisdom just thinking of you and really hope things improve for your son soon I know how draining it can be worrying about them 24/7 , take care of yourself too :bighug1:
Thanks, Buster. Sending you warm wishes too..Things will get better for us both.
Any news about your son Pulisa or is it too early to say? x
He's going to be in hospital for 2 weeks provisionally, Carnation. He'll be having his echocardiogram on Thursday so his heart function in relation to the ven can be assessed by the psychiatrist in charge of his treatment. The last few days have been spent picking up the pieces from Tuesday-I've got a lot of things to sort out for when he comes out and my daughter needs help psychologically but at some point things will get better and more predictable. He'll be able to resume his therapy once his mental health has stabilised. One step at a time though. He looks terrible at the moment and feels it but that's hardly surprising. Thanks for asking- I appreciate it xx
Don't take this the wrong way, but I hope he stays in for a reasonable duration for a in depth observation and breather for you and your daughter.
I can't even begin to understand what you are going through, but you are in my thoughts xx
I doubt whether he'll be in any longer-they tend to kick them out quickly into the community. It's really hard to get admitted thanks to "good gatekeeping" and there's a rapid turnover of patients..Quite different from the celebrity spa break rehab stints.
I'm sort of coping and try not to think about what is going to happen when he comes out because I don't want a repeat of last time xx
Hi Pulisa xx Just wanted to drop by and say I'm thinking of you and your son still. I really hope their some positive news soon, I really admire you. As someone who's been in out and out if a similar system, I've meet alot of people who's parents have total given up on them and pushed them to the side without a second thought. Sending lots of positive thoughts xx
That's so kind of you, Sarah. I'm not giving up on him but it's hard to accept how he is now. I hope it's not his new normal but if it is I'll accept it and do my best to help him. Thankfully the staff on this ward are much better than the last lot so I feel more reassured that he is being looked after and listened to.
I hope you are ok and managing to keep your head above the water...I admire you too because you have a lot to contend with but you carry on regardless and have done so well xx
That's all you can do Pulisa :hugs: x
whispershadow
28-02-20, 09:56
My son has been sectioned and taken to hospital. At least he is safe for now and maybe someone will be able to help him.
hugs pulisa :hugs:
Thank you, Whisper x
Just a quick update..He's been in for 2 weeks now and no mention of discharge. I think this ward is far superior to the previous one so am hoping he is able to stay in for longer whilst a support package is worked out for being in the community. Not sure what will happen if coronavirus turns up in the hospital though-he's certainly not worried about it and doesn't care if he gets it but then he is severely depressed. The heart scan had to be cancelled last week and his meds need reviewing anyway so it's all unsettling for my daughter and I as we are expecting him to be discharged at very short notice like last time...but hopefully things will be managed better and we will be able to plan for a safe discharge.
Those 2 weeks have passed quickly Pulisa.
And I hope all round that he isn't discharged in the state he was in the last time. That doesn't help anyone.
It still must be gut wrenching for you Pulisa and I hope there is a good outcome for you all. x
whispershadow
03-03-20, 12:17
Loves to you and him, pulisa :hugs:
What a lot of emotions you must be trying to process Pulisa. I am glad they are a better team, and I hope that he is in better shape when he’s discharged x
Me too and thank you x
Had some good news today as the ultrasound on my remaining thyroid nodule looked ok and I don't need to be re-scanned for a year. Thank goodness for that.
Nobody was in panic mode at the hospital. Business as usual.
Congratulations, Pulisa! *hug* One less thing to worry about.
That's brilliant news Pulisa, so pleased for you x
That really is great news Pulisa, you deserve a break :hugs:
MyNameIsTerry
04-03-20, 20:00
Glad to hear some good news in your life.
It does sound like your son is in a place where the patient's needs are more important than budgets and strict policies.
Me too and thank you x
Had some good news today as the ultrasound on my remaining thyroid nodule looked ok and I don't need to be re-scanned for a year. Thank goodness for that.
Nobody was in panic mode at the hospital. Business as usual.
That’s absolutely brilliant.
Thank you all so much xx
To be honest I wasn't expecting anything awful but I was very blase about it last year and ended up needing a second opinion from the Royal Marsden and subsequent surgery so I just hoped for good news this time as I knew that this nodule was much smaller than the others.
Anyway, looks like my son will be discharged next week but there's a lot to arrange re support at home which won't happen of course. Maybe CV will have hit the hospital by then and no one will be let out or let in..? He does have health issues so would be more at risk of complications but he doesn't care about that and would take his chances willingly. I hope he will get over this but I don't know how..I hope he will be able to restart his therapy but that all depends on what his psychologist thinks. i wish I knew what to do.
I wish I knew something that would help you.
When my Mum had dementia, we only got a lot of the help we needed because a family member worked for an older persons charity & knew of people and places to contact for support. So perhaps a charity like Mind can advocate for you/your son and suggest some support or signpost you towards something more specific to him.
Oh my, news changes so fast.
You probably have mixed feelings about your son returning to home. It has been a much longer stint this time, so I hope this time round it's easier on both you and your daughter and your son can eventually rebuild his life. xx
It looks like there are going to have to be some major changes and everything is very unsettling. Thank you though, Scass and Carnation..I have requested a specialist referral to an ASD psychiatrist but it all takes time and possibly CCG involvement. My daughter started seeing a counsellor today-she has been exposed to things which she can't deal with but she will now have some attention for herself and her ongoing trauma.
It doesn't help that she already had OCD contamination fears and now that everyone is obsessed with cv it just makes everything worse..She has been reading the NMP thread though and has a lot more insight than many of the serial panickers.
I expect you have a lot of organising to do Pulisa, but remember to take some tlc for yourself. x
Wishing you and your lot well Pulisa :bighug1:
Life never lets up for you Pulisa does it. I do hope this all comes good for you, please look after yourself and thinking of you :hugs:
As always, I'm thinking of you and your family xx
She has been reading the NMP thread though and has a lot more insight than many of the serial panickers.
Good God, Agt P! That's enough to give any fit person psychosomatic CV symptoms :ohmy:
I'm sending positive thoughts your way and hope you all get some respite from the relentless crappage and strife.
I'm sure Pulisa's daughter will pick the best bits KK.
(Erm, are there any best bits? :shrug:)
She knows not to believe everything she reads and not to get sucked into the general hysteria but all this has come at the worst possible time when she's also dealing with the fallout from my son's illness and hospitalisation..
Thanks to you all for your continued kindness and support. We are just finding it so hard to know how to make things better xx
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