Stroke - heartbroken

[BCBG]

Posting here because I don't want this thread to live for ever - but if anyone has anything comforting to say, please I need to hear it. My beloved brother has had a cerebellar stroke at aged 63. Sixteen days in and he's still only minimally conscious. I kid myself he knows me, he responds sometimes when nurses tell him to wake up, and he can sometimes move his right limbs on command, but his eyes seem fixed and he falls asleep almost immediately. He had an infection but he's off antibiotics and intubation now but he still won't wake up 😥😥 I am heartbroken especially because he and my other brother had a silly argument in my garden the last time I saw him - and that's somehow overwhelming now. I'm not stupid, I know the realities of a massive stroke, but if anyone has any positive recovery against the odds stories, please let me have them. I literally feel as though my own heart is about to split in two. My darling brother.

My mum spent several weeks mostly unresponsive in hospital due to a similar brain injury. We prepared for her death, we prepared for her to be left severely disabled or unable to walk/talk, but slowly and gradually she recovered and on the whole most people now see no difference to how she was before. The brain is an incredible thing. It will be needing a lot of rest and healing time right now before you can see what is possible. Try not to lose hope OP. Keep a diary, keep talking to him, playing favourite music, voice messages from different family and friends, maybe bring in something that smells familiar or of a smell he loves (aftershave, perfume, favourite food…)

My BIL also took several weeks to become properly awake, he was very seriously ill after a massive strike at 53. We thought he would not make it and it took months in hospital and a rehabilitation centre, to get him ready to go home.
I won’t lie to you, it hasn’t been easy and 4 years later he is not back to how he was, he still cannot work but he can do most daily tasks, including shopping and he has just been told he can do a course to relearn how to drive. His life is not the same as it was before, but he is alive and living an enjoyable, different life.

And don’t worry about the argument, it is very possible that he will not remember anything about it, when he wakes up.x

I work in stroke rehab. It's so difficult as it's impossible to predict which patients will see big improvements and which won't, but it absolutely is possible for people to improve after being this unwell. 16 days has probably felt like a lifetime to you, but it's such early days. Problems with movement, and with eye movements are common with this type of stroke, but can improve. Once he's able to, your brother will be having different types of therapy to help his recovery. The stroke association has a good website with lots of information, and ask your ward staff, where I work there's a really good local charity which provides a lot of information and support to families.
It's also usual to be absolutely exhausted by a stroke - the body is working to repair damage to the brain and it's unbelievably tiring, even weeks in patients I work with are wiped out after doing something like taking a shower, so try not to worry about the tiredness.
to you, it must be such a difficult time, I hope he starts to improve soon.

Thank you all for quick replies - I feel so dreadful tonight, somehow the last ten days didn't seem so bad. Maybe it's just reality is sinking in, my brain adjusting. I am
NOK so have to update the family as well - he has no family of his own - so I get all their questions too. I sat with both my parents when they passed, and that didn't upset me, but watching my brother cling to life is horrendous. I know he had.gold standard surgery abs I have nothing but praise for the stroke team where he is (London hospital) who are amazing. But the pain is intense tonight. Sorry. The only good thing is my son ran the Marathon last night and T the last minute asked for donations to the Stroke Association and he raised so much money in 48 hours - I had no idea how many of my own friends' families had been touched by stroke. So I guess a little good has come out of it. I just want him to wake up 😥😥

Not last night - yesterday. Can't type straight!

I have worked in acute stroke and saw many people in similar situations to your brother. 16 days is so early on. He has had a massive brain insult/injury and this will take time, he might not make a full recovery but he may regain some function. He needs time and it is common to be really sleepy. Thinking of you, it's so so hard.

@Bloatstoat can I just ask - how much input will the family (ie me) get into what happens next? DH visited today and doctors said they are considering a move back to a stroke unit near where he was living - but he has absolutely no family within two hours plus of there - and I don't think he has enough friends there to rally around for long. Doctor said to DH we are looking at major long term disability, hoists, two carers, hospital bed and peg feeding - but no one has said anything like that to me and I've been on the ward every other day for last ten days. I just feel like everyone is giving up on him and yet DH said he tried to hold DH's hand (brother has a mitten on as he keeps pulling the NG tube out). He's in there somewhere I know he is.

@BCBG how are you? I see the pp hasn't replied so maybe I could help. I would advise you to ask to meet with the consultant and possibly some of the therapists, particularly the OT and physio to discuss. A specialised stroke rehab unit is where your brother will be best cared for at this stage as they will focus on his speech and language therapy, physio and OT aswell as being able to meet his basic needs where a generalised ward or rehab unit may not be able to provide him with such good support. Stroke is so cruel, some patients make very small improvements over a long period of time. I have however met stroke survivors who have had massive strokes and their outcomes (over a number of years) have been okay, back to living in their own home with support of carers and walking aids etc). I don't want to dash or build your hopes as there absolutely is hope. He knows you are there. It is heartbreaking but he will take comfort in you being there by his side so just hold his hand and chat to him as much as you can. I used to tell my patients stories because although their verbal communication was impaired, they were very aware.

I’m really sorry op.

Thank you. It is just so unbelievably cruel. Almost unbearable. But he has to, and we have to deal. I know I'm alternately clutching at straws and feeling despair, and Im not the one suffering. The acute staff are amazing, but no one has any time to stop and the odd time I've asked staff how he is they are understandably cagey. I'm even frustrated because he's always been called by his second name but because the hospital record has his full name everyone keeps trying to speak to him or about him with the wrong name. I keep correcting it as I'm sure it must add to his confusion - but then staff change and it happens again. I want to sit by his bed all the time and protect him but I can only visit for an hour a day. But I do understand - I cannot imagine how hard it is to work on an acute unit day after day after day.

@BCBG I wouldn't hesitate to tell them that he prefers to be called a different name. In my old ward we had a board above the patients bed with their preferred name, things they enjoyed, likes and dislikes etc. We also used 'getting to know me' documents and we got families to fill these in. I loved taking time to read them (usually nightshift). Go into as much detail as you can about family, his day to day life, pets and hobbies etc. Don't be scared to ask to speak to the consultant or charge nurse and ask questions or raise these issues. It DOES matter that he prefers to be called a different name. He is much more likely to respond to this than what they are calling him.

Chest, heart and stroke scotland nurses may be able to help you or put you in touch with others going through the same thing. I dont understand how painful it is because I haven't lived it but I have nursed so many stroke patients and their families, I know you must be hurting. Thinking of you

I'm so sorry, OP, it must be so difficult. I hope your brother recovers, remember it's still early days

Can I just gently suggest that if you don't want your thread to hang around forever, you might want to ask MNHQ to move it to 30 Days or 90 Days only. Chat used to be deleted after 90 days, but in the last few years threads here are no longer routinely deleted.

I'm sorry to hear how stressful things have been @BCBG. Have I got it right that your brother had his stroke at a distance from where he lives, is registered with a GP etc? It would be normal for medical team to consider repatriation to a suitable hospital near his permanent address as it would probably be assumed this would be the best/easiest place for him to be and what he would want - if that's not the case definitely speak to them and explain why it may be better for him to stay where he is. It sounds like they have been clear with your husband about worst case scenario for your brother, which is really hard to hear - obviously I don't know any details about his situation but 16 days in is really early days, he may need everything they've discussed at the moment and still see improvement in the long term - for example, I work with Some patients who have a peg fitted but see improvement in swallow in the long term and end up managing without.
If your brother doesn't have anyone with lasting power of attorney and is judged to lack capacity to make decisions about his care at the moment, currently decisions will be made by his medical team in his best interests, usually involving family and next of kin. In my trust, we have regular planning meetings with family and the patient of possible to discuss plans for discharge and ongoing care. It's definitely worth speaking to the doctors, or if not therapy staff - they should be able to work with you as a family in supporting your brother and planning for the longer term. I know hospitals are pushed to the max at the moment so everyone seems super busy, and I think sometimes everyone thinks someone else has done the job of keeping family updated and it can get overlooked, don't be afraid to ask questions and discuss what the plan is, there should be one and you absolutely should be involved.

Also, just seen your update about your brother's preferred name - as PP have said, definitely raise this, it is important! We also use whiteboards for that sort of info, if his ward doesn't, I would speak to the Therapy staff, they are a smaller team than the nurses (with staffing issues the ward may have to rely on a lot of agency nurses so lots of different people) and will be around a lot so will be able to inform nursing staff on different shifts.

BCBG just wanted to send you good wishes and say how sorry I am you're going through this. My father had a severe stroke a few years ago and wasn't expected to survive and then to recover to the extent he has. He just walks with sticks now and is a little bit less logical than he was. He was also a puller out of the feeding tube. Your brother has a long road ahead and as others have said, 16 days is nothing. I was told by a nurse at the beginning that it was better to let dad rest than to be with him for long periods, so hopefully that gives you some comfort if you can't be there all the time. Dad was I think 6 months in hospital and rehab if not longer. He went through some very dreamlike phases at the start when he began to regain consciousness. Sometimes my mum would go in and he'd tell her he'd been off to Belgium with Ussain Bolt for the day and he completely believed it.

I wish you and your brother all the best.

@Bloatstoat

I'm sorry to hear how stressful things have been *@BCBG*. Have I got it right that your brother had his stroke at a distance from where he lives, is registered with a GP etc? It would be normal for medical team to consider repatriation to a suitable hospital near his permanent address as it would probably be assumed this would be the best/easiest place for him to be and what he would want - if that's not the case definitely speak to them and explain why it may be better for him to stay where he is. It sounds like they have been clear with your husband about worst case scenario for your brother, which is really hard to hear - obviously I don't know any details about his situation but 16 days in is really early days, he may need everything they've discussed at the moment and still see improvement in the long term - for example, I work with Some patients who have a peg fitted but see improvement in swallow in the long term and end up managing without. If your brother doesn't have anyone with lasting power of attorney and is judged to lack capacity to make decisions about his care at the moment, currently decisions will be made by his medical team in his best interests, usually involving family and next of kin. In my trust, we have regular planning meetings with family and the patient of possible to discuss plans for discharge and ongoing care. It's definitely worth speaking to the doctors, or if not therapy staff - they should be able to work with you as a family in supporting your brother and planning for the longer term. I know hospitals are pushed to the max at the moment so everyone seems super busy, and I think sometimes everyone thinks someone else has done the job of keeping family updated and it can get overlooked, don't be afraid to ask questions and discuss what the plan is, there should be one and you absolutely should be involved.

Thank you all - it's super helpful to read your replies. The hospital they are discussing g transferring him to is near where he rents a flat in London - but his only family (siblings) live a long way from there. I am the closest and it would take me 2 1/2 hours each way, two trains, a tube and then a bus to reach the hospital.

@NoToast

BCBG just wanted to send you good wishes and say how sorry I am you're going through this. My father had a severe stroke a few years ago and wasn't expected to survive and then to recover to the extent he has. He just walks with sticks now and is a little bit less logical than he was. He was also a puller out of the feeding tube. Your brother has a long road ahead and as others have said, 16 days is nothing. I was told by a nurse at the beginning that it was better to let dad rest than to be with him for long periods, so hopefully that gives you some comfort if you can't be there all the time. Dad was I think 6 months in hospital and rehab if not longer. He went through some very dreamlike phases at the start when he began to regain consciousness. Sometimes my mum would go in and he'd tell her he'd been off to Belgium with Ussain Bolt for the day and he completely believed it.

I wish you and your brother all the best.

Thank you, that's comforting. CN I ask you, was your father's consciousness low in the early days then? The Hospital says they can't assess swallow reflex etc as brother's consciousness levels are still so low - although he can respond to commands and he can move his right leg and arm albeit very weakly.

OP, I'm so very sorry to hear this, my heart goes out to you and your DB .

Many stroke patients go on to make massive improvements in their functioning and there's much that can be done to help with this. Keep pushing the team to make sure, when the time is right, he gets moved to the best rehab place possible. Your instinct that they need to call him by the name he usually goes to is dead right.

I recommend reading 'The Brain That Changes Itself' by Norman Doidge, for some insight into what can be possible.

I really hope you see significant improvement soon.

Hello BCBG,

Yes he was not conscious, then only minimally aware for a long time. Weeks or a month I think if not more. Then he very slowly came to but he was away with the fairies for months. I think I've read the recovery window is around 2 years. He was fed by tube and had a catheter for a long time, months rather than weeks I think.

He became very ill after transfer to our overstaffed local hospital from dehydration and starvation from taking his tube out. We weren't close by and my mother is very reticent about complaining. Things changed after she made a big fuss. But worry about that later.

I'm very sorry for your situation. There is hope but I think you are realistic that not everybody survives or recovers fully. This stage is so very hard. Remember to look after yourself as well.

Hello @BCBG, how are things? I hope your brother is doing a little better and you've been able to discuss things with the medical team. Thinking of you

@Bloatstoat thank you for asking - it means so much. My brother was taken back into ICU last night and re-intubated. His temperature is constantly high and it's affecting his heart and respiration rate. They describe him as 'very weak'. I'm not stupid so I know the odds are against him - they say at nineteen days in they would have liked to see improvement. We wait, and hope. Thank you for remembering.

I'm so sorry to hear it's not better news, such a hard time for you. Take care of yourself. I'm hoping for you.

[quote BCBG]@Bloatstoat thank you for asking - it means so much. My brother was taken back into ICU last night and re-intubated. His temperature is constantly high and it's affecting his heart and respiration rate. They describe him as 'very weak'. I'm not stupid so I know the odds are against him - they say at nineteen days in they would have liked to see improvement. We wait, and hope. Thank you for remembering. [/quote]
I’m so sorry to read this OP. Have been thinking of your brother and you

How is your brother? I couldn't read and run as my husband had a stroke on 1st September and another one three days later so I know some of what you are going through x