I don't know where to go from here

[littlefairy1974]

Good evening everyone,

I hope you are all having a blessed evening.

I have just come from visiting my husband, and was met by the nurse who will do the acessment on his care needs.

My husband had a stroke three months ago. According to this nurse, he will only have extra 6 weeks of physiotherapy from discharge, and, in any case, despite trying very hard, in this nurse's and the medical team's opinion, his brain his not responding to physiotherapy. My husband still can't move on the left side, needs to be hoisted, so as far as she is concerned, he will go to a nursing home, and she doesn't think physiotherapists or occupational therapists will go and see him, because they see no response from his brain.

I can't think straight, so they will just give up on him? Is that it, for the rest of his life, in bed, in a nursing home, at 57?

I am normally so positive, I never let my husband see what the medical team say to me, but I can't stop crying, because I don't know where to go from here.

I am not sure I can live in the same home as him, because I guess I will not be able to stay in the nursing home, how our marriage will continue, because we will possibly be separated. I will never leave him, but how can we be physically together? If recovery from brain injury, be it stroke or any other injury, can take years, doctors should know this, and at least give him 1 year of therapy, to give him a good chance of recovery, and not give up on him like this.

I feel so desperately lonely. Not the lonelyness of being physically alone, but a deep pain that I can't explain, the painful realization that I am failing my husband.

His brother came with me, and on top of it all, I had to hear the, I told you so, he would never come home, now you heard it from the professionals, it is you who don't want to face reality.

I just want to sleep for days, a deep sleep and switch off, only to feel a coward for saying it or even thinking about it.

I don't know who to turn to for practical support, because the medical team have, in effect given up on his recovery, beyond the prescribed months of occupational and physiotherapy.

I don't know why I am writing all this, or what I want from everyone. Just some hope. I have faith, god has let him recover the incontinence mostly, but now, it all stopped. I know he can recover, but not the doctors.

My husband's family blame me for being positive, because now they say I had a shock and it is my fault for not facing reality. But how else can I give him encouragement, if I am not positive myself?

I know that all I have written doesn't make any sense, and I sincerely apologise for such a long post.

I just hope my husband's brain starts rewiring again, and that some doctor finds compassion and doesn't give up on him.

[Lynd]

Hello

This is such a difficult situation for you. Absolutely heartbreaking.

I think if I were you I would get on the phone to Headway helpline. They may know of some options.

Is it possible he could come home with a very good care package?

Are they telling you he can't come home?

You sound exhausted. Try to rest a little.

If he had to go into a home you could spend as much time as you wanted with him if it was local. You would not be giving up on him. Far from it.

You are facing reality so don't take any notice of that talk. The reality is you are hopeful for improvement as any partner would be and you are entitled to think and feel that.

Do you have young kids or go to Work?

If not take yourself to bed for a day and rest. I did that a few times when I got totally stressed out.

You are in my thoughts x

[littlefairy1974 in reply to Lynd]

Dear Lynd,

Thank you so very much for your care in replying to me, it is so much appreciated.

Well, because John can't turn in bed on his own, is fed by a tube through his stomach, (the stroke parallysed his throat and mouth muscles), if he drinks even, the liquid will go straight to his lungs and give him pneumonia. Besides this, he needs to be turned in bed at night, requiring two people, and hoisted when he needs the chamber pot, because he can't sit on his own, lift himself or walk, so they said to me, for now, he needs to be in a nursing home.

What scared me was that they said, because the brain is not responding to physiotherapy and they can't see any progress, as far as his walking is concerned, they will continue the physiotherapy whilst he is on the stroke rehabilitation ward, (they are putting the discharge programme in place during the next three weeks), and after discharge, they will only give him, possibly, six weeks of physiotherapy. But, because they don't see any progress, the acessing nurse doesn't think they will visit him in the nursing home.

How can they just give up on someone like that, when stroke survivers, from what I read, sometimes take one year to walk?

I would be happier if they told me it is a temporary thing, my husband being in a home, and that physiotherapy would be guaranteed. I did not have the heart to tell him what the nurse said, he has heard it twice now from the medical team, two months into his stroke, that he would never walk again. I go there and I see him so frail, I try to encourage him, and he is trying to fight, but I feel like I am fighting a losing battle with the medical team.

I will give headway helpline a call tomorrow, they have been invaluable to me, as well as this community.

No, we don't have children, I miscarried some years ago, and my husband refused to have children again. Now thinking about it, it would have been great if I had them.

I am a translator, so I work mainly from home, however, I doubt I will have any way to concentrate on my work. The only way I can escape thinking about all this is by sleeping, because my mind switches off completely. I have just drunk some camomile tea, to see if I can finally sleep.

Once again, thank you so very much for your kindness and care.

[Lynd in reply to littlefairy1974]

Yes he ceartainly needs lots of nursing care. I am very much an amateur but surely he would need continued physio???

As always we can only deal with these things day by day so tomorrow try to find out what his entitlements are and take it from there. Sleep well x

[littlefairy1974 in reply to Lynd]

Dear Lynd,

Thank you for replying to me, for your kind comments and your care, it means so much to me when all seemed so hopeless.

I have given headway helpline a call. It seems my husband may qualify for the continuing health care package. Of course they can't be sure but at least I can ask.

They told me he can go to a stroke care home where they may have rehabilitation therapies, and if I am allowed, I can pay for extra therapy and employ someone. It suddenly doesn't feel so hopeless, thank god.

I feel a lot better today, I slept a lot, and am very grateful for it, because today I could focus better.

Nothing like one day after another to make things better.

[Lynd in reply to littlefairy1974]

I am very pleased that you can see a way forward now. The thought of residential care is very daunting but if it has to be at least you can vist whenever you want to and know ow that all his needs are being met.

I really hope you will find peace within yourself.

Now keep up having good rest periods and let us know how you are getting on x

[littlefairy1974 in reply to Lynd]

Dear Lynd,

Thank you once again for replying and for the care and kindness.

Yes, hopefully it will not be for a long time he will stay there and he will be well looked after, that makes me feel inner peace.

I will certainly keep everyone updated on how we go on.

I will try to rest more too.

I wish you a beautiful evening and lots of blessings.

[Lynd in reply to littlefairy1974]

Night night..... Sleep tight x

[cat3]

I'm so sorry to hear about your husband's predicament and the heartache it's causing you. I think you might benefit from some professional advice starting with a phone call to the Headway helpline.

We, as a family, experienced something similar in 2015 when my ex husband's 2nd wife insisted on his transfer to a nursing home after a catastrophic bleed on his brain, despite the hospital's wishes for him to pursue further treatment in a highly prestigious NHS rehab centre. My son and daughter were powerless in overturning the decision as even with legal advice 'Next of Kin' couldn't be challenged.

It'll be partly down to medical/legal precedents whether you can influence the future of your man's care, but even those can be ignored by big hearted neuro-consultants who you can usually contact direct via their secretaries.

Make a start m'dear by phoning the helpline on 0808 800 2244 (office hours/free calls). Good luck/best wishes, Cat x

[littlefairy1974 in reply to cat3]

Dear cat3

Thank you so much for replying to me, for your kindness and care. Be sure I really appreciate it.

I will certainly give headway helpline a call tomorrow, god willing they will help us.

Once again, thank you so much for replying. Have a blessed and beautiful evening.

[cat3 in reply to littlefairy1974]

You're very welcome m'love ; I hope you find the support you so badly need. 🌻 x

[littlefairy1974 in reply to cat3]

Dear Cat3

Thank you once again for the well wishes and kind comment. Be sure it meant a lot to me.

I have given headway helpline a call and once again, they have been invaluable and helpful.

Apparently, the acessing nurse is wrong I think, because we can choose a stroke care home and ask the manager about all the activities that are done to rehabilitate patients, as well as all the therapies they have, or if we can bring someone private for extra therapy. This has put my mind at rest so much more, it doesn't feel so hopeless after all.

Now we just have to hope my husband's brain engages and lets him recover.

Have a beautiful and bless evening.

[cat3 in reply to littlefairy1974]

Littlefairy, I'm so glad Headway was able to reassure you about John's continuing care ; you must be SO relieved. I hope his mobility will gradually improve with therapy, ideally to the point where he has some control of his left side.

Small achievements can be so encouraging (for all concerned) and, though it could be a long process, I hope you'll be looking back before too long and smiling at his progress. Please stay in touch with updates on John's journey and also on how you're getting on ? We're always here if you need to talk m'dear. 😐

Cat x

[Beckham07]

Hi, I was in a similar situation with my 33 year old son who had a aneurysm and stroke 5 years ago, he went into a nursing home after a year in hospital and on Monday he is coming home to a adapted bungalow with a 24 hour carer, he has made so much progress although he still can’t use his legs but I believe with encouragement, support and love anything is possible. It is not easy and I can’t explain how tired I am both mentally and physically but all ai can say to you is, keep faith and look after yourself.

Heather

[littlefairy1974 in reply to Beckham07]

Dear Heather,

Thank you so much for replying and for the hope you gave me, it means so very much to me.

I am so so glad your son is recovering so well, may it continue, god willing.

If I may ask please, what were the effects of the stroke and how has your son progressed? Did you have private physiotherapy?

[DTBI]

Bless you, you’re a lovely wife who cares for him in such severe circumstances. It is difficult to predict the future, so to some extent you have to hope for the best, but you won’t know for sure where you are until you get there. It is important to look after yourself, and trust yourself to make the right decision when necessary. Best wishes x

[littlefairy1974 in reply to DTBI]

Dear DTBI,

Thank you for replying for the care and kindness, it means the world to me.

I am really trying to do my best for my husband, because he would have done it for me, and because I must know in my own heart I tried everything possible to give him a great chance of recovery.

I hope I can make the right decisions together with my husband.

I will try to take better care of myself, if nothing else, to help him.

Have a blessed evening.

[Kirk5w7]

I am so sorry for the predicament you find you are in now. Continuing care is little discussed, there are yourselfcontinuing care packages provided by the nhs which Headway will be able to advise on this.

You face a rocky road and will need all the strength and help you can muster. Please rest and eat well.

, and even kind to yourself.

Take care.

Janet

[littlefairy1974 in reply to Kirk5w7]

Dear Janet,

Thank you so much for replying for your care and kind comment, it is so much appreciated.

Yes, I have given headway a call and perhaps my husband can have the continuing health care package.

I hope god gives me strength to fight this battle.

I wish you a very beautiful and blessed evening.

[Hidden]

Concentrate on getting yourself sorted, after which I am sure you will see things clearer. I am sure you will find the advice you seek on this site but please get yourself rested and in the correct frame of mind for the fight ahead.

[littlefairy1974 in reply to Hidden]

Dear JasonWellens,

Thank you for replying to me, and for your care.

I feel much better today, after sleeping quite a lot. I have given headway a call and feel much better now.

I wish you a beautiful and blessed evening.

[Hidden in reply to littlefairy1974]

Headway are a superb organisation who have done nothing but help me out, it's frustrating but getting better is slow and hard work. Possibly the most frustrating is the lethargy, no energy the tank is empty, I have found having set my expectations higher than I should have has a negative impact. If you need to sleep then do so. I can't count the number of days I lose to total loss of energy, go with the flow, time will help but it's slow.

[F1951]

Hi, l know how you feel my husband's in the same situation, he was in hospital for 5months, they told me to put him in a home, as he was also peg fed, very disabled unable to walk, double incontinent and can't control his bowel, he had a very traumatic stroke, lve had him home for 3years and l'm completely exhausted, l have carers four times a day, but 22hrs a day it's just me,and it's becoming totally unsustainable,,l'm fighting with myself daily as l feel so guilty, but l can't carry on like this or ll'l go before him, lve been told by doctors, phisio etc to now put him in a home,but how and when l don't know, this is the worse decision lve ever had to make its a no win situation, l can't cope here, but l don't want him to go, my heart goes out to you, there's no easy answer, but think long and hard before you make a life changing decision, have a good sleep on it and take care,

[littlefairy1974 in reply to F1951]

Dear F1951

Thank you for replying and for your kind comments, they mean a lot to me.

I am so very sorry for your husband's situation. Please don't give up hope, medicine is always advancing, who knows in a very short time, scientists may have an answer for your husband's situation.

It is not an easy decision to make, and I pray god guides you to the right decision.

Is your husband still able to talk and have a conversation?

Please, feel free to talk should you need to.

I wish you a beautiful, blessed night and lots of inner strength.

[F1951 in reply to littlefairy1974]

The same to you, godbless you,l'm praying l get some help from up above, Peter does speak , it's quite hard to understand, all he says he wants to die, he hates living like this, and in his shoes l would probably feel the same, when this happened we just wanted him to live at any cost, but looking back we were being selfish, he's in pain, and he hasn't got a good quality of life, for such an outgoing full of life man it's very sad, thankyou for your reply, hope all goes well for you and your man x

[EK86]

Please do not give up hope! My mom was given a less than 0% chance of having any quality of life and a DNR was added to her medical file. The neurosurgeons comment was ‘it would be kinder to her if her heart failed or she contracted pneumonia’. 10 months later she is back home having physiotherapy and speech therapy 2-3 times a week. We still have tough days but she is back with us. They do say everyone’s recovery is different, but sometimes all you have left is hope.

If you have any questions or anything please reach out.

X

[littlefairy1974 in reply to EK86]

Dear Ek86

Thank you for replying and for the kindness and hope you gave me.

Well done on you and your mum for defying the doctors. It was so unkind to say what they said to you. I think, they see so many bad situations, that they lose the bed side manner with patients and their family, without thinking they could be distroying someone inside with their comments.

Well done on your mum for the recovery god willing it will continue.

If I may ask please, what is a DNR and, in what way has your mum recovered? Did you have to pay for private physiotherapy?

God give you both a blessed and beautiful evening.

[EK86 in reply to littlefairy1974]

Hi! A DNR = do not resuscitate. Thankfully that has now been removed!

She has weakness on her right side still but the physio seems to be working as she has started be able to use her right hip so fingers crossed. They have started to stand her up now! She is now able to eat and drink normally again. Her speech is slowly coming back, each day she’s able to say more and more words. She has a care package and she has carers in 4 times a day. Her moods have stabilised, she used to get angry and cry a lot, which I think was down to her not being able to communicate. She’s very happy and positive about the future. The physio is through the nhs.