Severe Brain Injury

[DickJagger]

Not an AIBU - posting here for the traffic.

Has anyone any experience of recovery from a severe brain injury? Husband had a massive stroke in January 2023, and then another stroke September 2023. He is physically fairly well - can walk, move around unaided, etc. The brain damage is the main problem. It is hard to describe. I would say he roughly has the brain power of a 4/5 year old child. Is there anyone who has experienced the same thing, anything I can do to help him? I know the brain is supposedly elastic and adaptable.

I would add that the strokes have given him a visual impairment so he is massively limited that way too.

I think the brain is often able to 'rewire' itself, or so I've read. Dead cells won't come back to life but other cells will 'compensate' in a sense.

@DickJagger , I’m sorry I can’t really help you but I couldn’t just ignore your post.
My dad had a brain tumour and after surgery he couldn’t speak as well and couldn’t walk at all. He was in his very early eighties at the time. He stayed at a recovery facility for a while and eventually was back to where he was before the brain surgery.

Stroke affects different people in different ways but generally if you've had a significant stroke there will be some degree of lasting impairment.
What do you mean when you say he has the brain power of a 4/5 year old? I assume you mean his cognitive and/or communication skills have changed. He's an adult who has had a brain injury so it's not particularly helpful thinking about it in terms of a child.

As for plasticity/adaptability - once the cells are dead they will not come back to life so that particular skill may be lost. Sometimes other cells may be able to learn that skill. It might look a little different to how it did before and it is likely to take more effort. Not every person regains lost skills. Has your husband not had rehab? If not, why not?

Is he getting rehabilitation therapy? It will likely take years before you will know what the lasting damage from his brain injury will be. Take the advice from the specialists on what you can do to support him and make sure you are getting support too as his carer if you've taken on that role.

Brains keep recovering years after injury.

Is he at risk of having more strokes, though?

I've done quite a few neuropsychological assessment for stroke patients. Typically you should see some progress over a period of around 12 months then this will plato. It is usually accepter that after around 12 months this will be an indication of what your husbands brain function will be at moving forward. That is unless he has more strokes. The key will be controlling the factors that cause the strokes (I.e. blood pressure) to prevent further damage. I'm sorry that this is not better news. Although people are variable, typically the more insults to the brain the harder the recovery. There should be a stroke support service near you. Headway can also help www.headway.org.uk

Has he not had access to a rehabilitation team or have you not been provided with any resources?

My late husband had an ischaemic stroke in 2013, caused by atrial fibrillation. He'd previously had a couple of mini-strokes, but refused to see a doctor. He'd been on aspirin, but that evidently wasn't enough. After the major stroke, he was put on warfarin.

His personality changed to an extent after the stroke. He spent 4 months in hospital learning to walk again. Was left with left side neglect in his vision and hemiparesis.

He got really grumpy/aggressive with me and swore at me. Gradually, however, things improved and he apologised for how he'd been. He survived the stroke 8 yrs. By then, he was more or less his old self. The night I lost him, he was so sweet to me.

He still had some memory problems. Long term memory was fine. Short term was fine, but medium term (if I can call it that) was problematic. However, he knew that it was a problem. Things like he'd see a film or a tv programme and not realise that he'd already watched it. At first, he'd vehemently deny having that problem. Latterly, he'd grin and say 'I've had a stroke, you know!'

He was in his 70s when he had the stroke; in his 80s when he died. (A heart attack took him - he'd had open heart surgery 11 yrs prior to his death - the surgeons promised him 10 yrs if he agreed to the surgery.) Your husband is younger I'm guessing? If so, he has a better chance of recovering so far as I'm aware.

Please Google 'Headway', a national brain injury charity. They offer huge support in the way of courses for coping skills, advocacy, activities and support groups etc. I'm left with quite a deficit after a complicated brain infection and they have been invaluable.

Sorry but this may be long
my ex husband had a severe stroke and lost his speech, short-term memory, and ability to do the most simple maths or write more than basic sentence. It was 30years ago, but there was an experimental course in London for stroke patients in which they had 'lessons' from 9 to 5. It was incredibly intense , the idea being that the sooner the brain was stimulated, the better the outcome. It was also exhausing. However, I gather the results were very good indeed but with a high patient staff ratio, was deemed uneconomic.
So, I set up my own course at home. Made simple maths cards (yes, it started with 2 +3), and gave him some every day, increasing the complexity over time. Raided bookshops for suitable English Language books and the best I found were English for foreign students. Gave him short paragraphs to read from local papers, and got him to write simple descriptions e.g. how to make a cup of tea, how to boil an egg. At the beginning, he could hardly tackle any of these things but, over time, and with a lot of sweat and tears, he was able to return to work. Sadly it was only in a basic clerical job unlike his previous job as an International Finance Negotiator but....it was a job.The

There was no help from the NHS apart from half an hour speech therapy per week, but the waiting list was 6 months and thus far to late to be of any use.

Sadly, and I am sorry to issue this warning, the stroke had deeper effects that only became apparent over a couple of years. He went from being a funny, gentle, kind, intelligent man to bring cruel, abusive and devious.
I can only echo what others have said ie. seek help from wherever you can and, most importantly, as soon as possible. Get his brain and body working even if it seems hopeless, time-consuming, and difficult. The steps may be small at first but ,as you say , the brain can be quite adaptable and resilient.

Just read your additional info about the visual impairment. That makes things more difficult for both of you but be adaptable and think of how you can stimulate his brain verbally.
I wish you all the luck in the world.

Oh goodness you poor things. I don't have practical solutions as my situation is different, but I just want to offer some hope that the brain DOES have amazing plasticity and the ability to rewire, it isn't just a platitude people say. My child suffered a severe stroke and has ended up with a shunt. It's taken a good few years, but they have made incredible strides in their recovery. The brain seems so fragile us, but it is incredibly tough and adaptable, so don't think that the reality you have right now is your reality forever. Also, do NOT google. Just don't do it. You will go on looking for the answers for YOUR husband specifically, and they obviously don't exist. I read so many devastating things on google which wrecked me, and not a single one of them has been true, so don't add those worries to your shoulders. Thinking of you x

I'm so sorry about your husband's illness.

I think the brain can find different pathways but it needs a LOT of work and motivation to improve on this level of damage. Andrew Marr, for instance, had a major stroke and I believe he did a lot intensive physio and speech therapy to get back to where he is now, and even then he can't use his arm. My mother had a medium level stroke at around 84 that left her reasonably mobile but with a speech and sight impairment and that completely knocked out her ability to deal with numbers in any way or to write. In the early stages I thought she was the kind of person who would be motivated to work on recovery, but she basically resented the fact that the stroke had happened and felt that she ought to be able to recover spontaneously. So she didn't realistically co-operate at all with physio and speech therapy, including private therapists we got in to supplement what the NHS was offering, and slowly went downhill. However, if your husband is younger there could potentially be a different outcome.

Oh how I understand this!!

My husband had a haemorrhagic stroke in May last year. He is partially paralysed on his left side. His memory is shocking and his cognitive behaviour is horrible. He's constantly shouting at me, calls me a liar, accuses me of all sorts. He's convinced I'm constantly moving us to new house, he's driving etc. It's exhausting and like dealing with a child.

It's getting worse so I'm trying to push for a MRI to see if he's had further bleeding or has the beginnings of dementia.

Sorry you are going through this but it is not unusual in stroke victims...see my post.
Please do keep pushing for a scan. Several months after my ex husbands bleed, I knew something was still going on and after being utterly fobbed off by a number of docs, I had to bring the 'big guns in' . It transpired that there was a build up of fluid behind the operation site in his skull. Back into surgery. Once the pressure was off his brain, there was a sudden and marked improvement in his cognitive abilities.
I am so sorry but there is little other advice I can give. I know it is a strange thing to say but the best thing he ever did was, after two years, he walked out on me in a particular unpleasant way. Devastating at the time, but I was able to rebuild my life.
There is one thing that did keep me going was to keep telling myself that, however difficult and demanding he was, he was not the lovely man I had married and that none of this was his fault.