please help

[Amity1]

My fiancé suffered a major stroke two weeks ago a day after being diagnosed with atrial fibrillation which caused two blood clots. He was in Addenbrooke’s for six days where the doctor told me if he survived this as it’s likely he could have another stroke that he would end up in a care home. I’m absolutely petrified of this happening. When he was transferred back to Norwich where we live they sounded more hopeful and said that it would depend on how he got on with rehab etc. He’s paralysed on the right side plus he can’t talk. He’s trying so hard at the physio and really putting everything into it but I’m so scared that he will end up in a care home and not back at home with us. Please can anyone tell me whether they’ve been in a similar position and proved the doctors wrong. He will be in hospital for a few weeks and then to a specialist stroke rehab facility. Please help a very anxious and stressed lady.

[Windlesham]

Hi Amity1,

I am so sorry you and your fiancé are in this position, I know it is truly terrifying.

My husband had a very severe stroke 6 years ago, his was a bleed deep within his brain. He also had paralysis of the right hand side and loss of speech called aphasia. This can also affect other forms of communication such as reading and writing as it has in my husband’s case.

My husband had the stroke in mid March and returned home at the beginning of August after 12 weeks in rehab.

Rehab did wonders for him. From not being able to even stand in hospital they got him walking short distances with a quad stick and able to go up and down stairs.

He had a lot of speech therapy but his speech is still very limited. Yes, no, please, thank you. He knows what he wants to say but often needs the initial sound of the word to say it. This loss of communication is the cruelest and most frustrating result of the stroke for everyone.

My husband was 57 when he had the stroke. We have met someone who was 24 when they had a very similar stroke and she has recovered her speech. The younger you are the better the prognosis.

Life changed in an instant when my husband had his stoke but very gradually you come to accept what has happened and to make the best life you can. To begin with there is just utter disbelief that this has happened.

When my husband came out of hospital we joined a gym. We are very lucky to have an adaptive gym locally. This has really helped improving his fitness levels and motivating him to keep working on his recovery.

I wish you all the best and hope your fiancé makes a good recovery. This certainly isn’t a club you want to join but take every day at a time as when you think too deeply it can become overwhelming.

[Amity1 in reply to Windlesham]

Thank you so much for your reply. This has given me some hope that one day he might be able to come home. Did the doctor ever give you a prognosis at the time? You must have felt so much relief the day your husband came home and it sounds like he’s doing really well however hard it is. I’ve heard so many good things about rehab, I’m really hoping and praying that my fiancé will have really good results from it too.

[Windlesham in reply to Amity1]

Hi Amity 1

When in hospital the speech therapist warned that it was unlikely he would recover proper speech. Whilst in rehab they gave me counselling for the’ loss of my husband’ which I didn’t find useful. They later admitted he was cognitively a lot more with it than they first thought. They asked me if I wanted him to go in a home. I said I wanted him home and they arranged handrails etc. it really is a roller coaster but hang on in there. How old is your fiance?

[Amity1 in reply to Windlesham]

So maybe I need to push what they told me at Cambridge to the back of my head the best way I can. Possibly they tell you the worst outcome just to prepare you rather than it’s definitely going to happen. How are they going to know? Surely it would depend on the rehab? He’s 52. Yes that’s really insensitive for them to give you that type of counselling. You’ve not lost him, things are just different.

[cat3]

Neuro doctors will always offer the bleakest scenario as an option in order to deter premature, and maybe unrealistic, expectations in loved ones.

After my brain haemorrhage, my son & daughter were given 50/50 odds of my survival and warned I might be seriously compromised mentally and/or physically if I did survive.

12 years on, I do have memory, fatigue and mobility issues but I live independently, managing housework, shopping, gardening etc. and, though life is very different socially, I'm ever grateful to my lovely surgeon and team for my safe return to loved ones.

It looks like your man has been persevering well these past 2 weeks, and there's so much scope for improvement in weeks and months ahead. Look after yourself m'love ; you'll need to stay strong in order to support him later on.

Hope to hear of further progress on your updates Amity....

Cat x

[Amity1 in reply to cat3]

The doctor came round and spoke to me today. He said that my fiancé had a very big stroke. It will depend on how much recovery he has but still talking about a care home, possibly at home but there might not be enough care even with carers in four times a day as they can’t be there at night. I say it does all depend on his progress but I’ve got to be prepared for this. He should be moved to a stroke rehabilitation hospital so we’ll see how well he does there. Also, he doubts whether his speech will come back. I was expecting this but it’s so hard to hear xx

[Amity1 in reply to cat3]

just copied and pasted the latest update. It feels so bleak and I’m really praying for a miracle. Reading your story cat sounds encouraging, thank you

[cat3 in reply to Amity1]

Hang in there Amity. Staff in the rehab unit have the expertise to maximize your man's potential and they'll do all they can to improve his mobility.

A friend of ours spent two months at the rehab centre at Walton hospital and achieved sufficient mobility to deal with personal hygiene and to communicate his needs. He now has a carer checking on him daily and manages short walks.

Unfortunately, it's impossible to predict the long term effects of any type of brain injury, so the 'wait and see' period is agonizing for loved ones.

It's hard, but try to focus on the here and now, and on even the smallest improvements. I really hope there are better days to come for you both m'love.... x

[LostGenius]

Sorry to hear what has happened. ❤️ Hang in there as things won’t be easy on the both of you.

All I can say from experience is that don’t believe the doctors on recovery… the brain is a miraculously changeable system and the recovery also has a lot to do with the fortitude of the patient and those surrounding them.

It will be hard for your fiancé over the next little while both physically & mentally. So get ready to expect this… My Mom suffered a major stroke (apparently the kind you never survive). The first few months she was in denial mentally about even having had a stroke, her personality was off (so don’t take anything personal). He speech improved so much that her caretakers at the rehab facility wished it hadn’t. The re-wiring of what she was saying took longer and that’s still a work in progress and I’m still seeing improvement over a year later.

From what science knows the first month or so the brain is flooded with these amazing hormones that help it heal & repair itself. This is the period where it is imperative to get the most intensive rehab… that means speaking to your fiancé like normal even if he cannot reply. Helping him get movement in the side he lost function on. Even just the basic movement of even someone else moving the other person’s body for them can really help re-training their brain. If your facilities are like the ones we have here the 30 mins or an hour a day is not enough. You & your fiancé need to go above and beyond what the rehab will do for him if you want to most progress.

Around 6 months the progress should better indicate the outcome you are in store for but still not final. Brains heal slowly and over time. It’s very strange see a person recover and improve from not knowing they had a stroke, not being able to move or even know they have a left side of their body to actually moving it again. The last 1.5 years have been hard but seeing the miraculous progress is something. Things are never the same but you’ll get through this.

I’ve also had a brain injury myself. Re-learning things like you are child starting again is hard but not impossible. You’ll see lots of people who come through things on here and have way better attitudes & advice than some medical professionals. Every brain heals differently and progress is never linear.

Don’t give on your fiancé and don’t let him give up on himself. The most important thing is to remember that when you become a caregiver in some why do not forget about your own well being. Get enough sleep & eat healthy (even when you don’t want to). Take care of yourself first.

Here’s to hoping your fiancé is on the path to a miraculously recovery . ❤️‍🩹 Keep us posted on his progress.

[Amity1 in reply to LostGenius]

Thank you, your reply has given me so much hope. It’s way too early to accept the prognosis, like you say things change over time. That’s great news about your Mum and I’m so pleased she’s making progress all the time. The chat group on here are so supportive and encouraging too. I’ll never give up on my fiancé and will always support him in going further. I do massage his hand that has the paralysis in plus his feet if he lets me but maybe I should try moving it gently too. Not too much as the physio will know more what to do but just some gentle movement will be good. Can I also ask is confusion part of the stroke? I know everyone is different but sometimes he seems very confused, other times fine.

[LostGenius in reply to Amity1]

I’m glad you don’t think I’m too pessimist. 😉 The struggle after a stroke or brain injury for both the patient & family is real but your positive and supportive attitude in life will help your fiancé. ☺️

I’d say gentle movement can’t hurt, but do talk with the physiotherapist. My mom didn’t want to move because she had that tingling nerve damage pain after the stroke but eventually it got somewhat better. She thought the tingling was because of the movement but when it happened when she wasn’t moving, she finally realized it was something different, and then I was able to convince her to move more .

I’d definitely say confusion could be a symptom from a stroke or any type of injury to the brain. It really depends on what part of the brain exactly was damaged by the stroke. If you can find out that information, then you can know what possible deficits your fiancé might have injuries to those areas. They used to think we were only left and right brained but now they realize both sides of the brain work together so even if one side of your brain is damaged or doesn’t even exist, the other side can compensate, but it takes time and years of hard work to try and repair it. The fact that you mentioned he can do short walks. That’s a great sign.

There’s also lots of books on the topic of stroke that you can learn, in great detail what other people went through and the progress possible. The first one I read way before my mom even had a stroke was called my stroke of insight by Jill Bolte Taylor. A neuroscientist who had a really bad Damaging stroke and how she was able to recover. If you don’t know what recovery is possible, you don’t strive for it. There’s also new tools out there that can actually help a person move their body through robotics. Your hospital doesn’t probably have those, we don’t have anything close to that here in Canada but you can Google them to get an idea of how they can help. I even just saw some thing about an American company that rents out these robotic attachments for arms of stroke patients along with a training program, but I don’t recall the name.

Keep on thinking positive and we are here if you need to rant! Wishing your fiancé a speedy recovery! He’s lucky to have you there by his side. 🤗

[Amity1 in reply to LostGenius]

Unfortunately he can’t walk, he has paralysis in his right side with his leg and arm