Stroke - the poor relative 😢

I am keeping my fingers crossed for you to win the lottery Primrose 🤞🤞
I get what you and CarrotTop are going through.
Medical staff all said my DH was lucky to survive, but in darker moments he says he wishes that he hadn’t.

Yes, Stroke is devastating, life changing and very cruel. It can happen at any age. We receive news letters from the Stroke Association and this month they feature a 7 year old boy who is now in a wheelchair following a Stroke. His Dad has given up work to care for him while his Mum, a teacher, carries on working. They have other children too.

I know several people who have had strokes recently but are able to walk, cycle, even drive after a few months. A couple of them are now badly affected by depression and anxiety now. Unfortunately my husband’s first Stroke Nov 24 was major and he is still in a wheelchair and only able to use one hand which is not his dominant one. A second stroke at end of May 26 has made his speech and memory much worse. He is unable to stand unaided, has to have his food cut up, still sleeps in a hospital bed downstairs and cannot enjoy his hobbies like horse riding, motorcycling, walking, DIY, holidays abroad etc.

We have had little in the way of support. The GP just nods and says he understands but says he is lucky to have survived. Husband says otherwise! We tried a Stroke support group a few times but they were all pretty able and rather cliquey. Physio we now pay for privately, £110 an hour as NHS support is non existent. I have pushed to get more NHS speech therapy and we have been allocated about 6 sessions but they made it very clear that will be it. I found a gym that did lunchtime sessions for stroke victims and I took my husband for about 6 months then it closed.

Everything is now down to me to organise. At the moment I am physically and mentally (just about!😉) able to do this but further down the line I may not be able to. Then what?

I sympathise so much for everyone on here whose lives have been affected by Stroke. 😥

If I win the Lottery I am buying a big bungalow fully wheelchair friendly, employ a full time support worker or nurse to take over all my jobs like encouraging him to do exercises, speech therapy, try new things etc.

CarrotTop

I recognise your situation and can only wish you luck with how it all progresses for you. There are so many of us out here, living a life that people who've never been through it just don't have the breadth of experience to understand. I'm not dismissing their sympathy, nor would I ever - most people are decent souls whose kindness is very much appreciated. However, there are some experiences which elude full understanding without some points of reference to fall back on. We're essentially on our own. Even with a large back-up team (family, friends, the relevant medics), I can only describe it as trying to steer a ghost ship in unpredictable winds. My heart goes out to you.

Same back at you 💐💐

I recognise your situation and can only wish you luck with how it all progresses for you. There are so many of us out here, living a life that people who've never been through it just don't have the breadth of experience to understand. I'm not dismissing their sympathy, nor would I ever - most people are decent souls whose kindness is very much appreciated. However, there are some experiences which elude full understanding without some points of reference to fall back on. We're essentially on our own. Even with a large back-up team (family, friends, the relevant medics), I can only describe it as trying to steer a ghost ship in unpredictable winds. My heart goes out to you.

The Stroke Association are good but not highly publicised, nor are other support groups. Reading posts on the stroke association forum my heart goes out to survivors and loved ones who tend to echo what I say.

wondered not eondered

I eondered at the time in happened to a bit younger relative of mine, about setting up some sort of voluntary, or support group.
But a. I didnt feel I could intrude on her most immediate family
and b. I dont live near enough to hospitals.

When I was on the stroke ward I quite often would go in search of staff if I saw another patient who was distressed but sadly they often ignored it, they were so understaffed and most of the care was given by health care assistants.
One HCA said it was because patients with a brain injury were not as able to complain, they effectively have no agency. I complained to PALs and to the hospital management, but only received a stock response with the promise they would look into it, in the end I took over my husbands care most of the time.
I hoped things would improve upon being discharged but that was a vain hope.
However, at least my DH can walk with assistance and we can function as a couple, going to stay with our DDs or for a weekend away with the family, but it needs exhaustive planning.

Thanks for replies.
xx

Our eldest son suffered a severe stroke aged 35. He was living in Japan at the time and his care in hospital was great. The after care almost non existent despite insurance.

The care he received when he arrived home about 6 months later was phenomenal with medically and practically.

But that was 18 years ago.

A living hell for both of you Fallingstar and my heart truly goes out to you. Not that that’s much use to you.

I think many of us can identify with your back story. Knowing of someone.

I hate the fact that it’s called a stroke. That sounds so gentle a word for something so catastrophic doesn’t it?

I used to think a stroke was some kind of a heart attack until I realised it was actually brain trauma, a bleed on the brain.

The wife of a friend died this year. She had survived her stroke four years ago and was in a nursing home. Needing a hoist and to be fed. Because the first stroke took her mobility and a month later, a second one robbed her of all speech.

Beyond cruel. No QoL. Her husband visited every single day to assist with feeding. Just horrendous.

Words are pretty useless for you. Help is what is needed. I hope you have good friends or family who can offer respite. x

You are right that stroke gets little publicity.

I am sorry that you have not had the support that you need. It is a disgrace.

GrannyGravy13

A stroke can happen at any age, lest not forget that also.

We know a young lady who had a severe stroke in her mid 20’s. Two young children and a partner who couldn’t cope so walked out.

Learning to walk, (somewhat wonky and with aids) talk and then relearning how to read at the same time as her children.

Care and support is somewhat sketchy

I am so sorry you have no support Fallingstar you need to take care of yourself, which I know from your posts is difficult for you 🌺🌺🌺

There were younger people on the stroke ward when my DH was there, one a young man paralysed down one side and unable to speak with a young wife and child. Is tragic. Is definitely not just older people.

A stroke can happen at any age, lest not forget that also.

We know a young lady who had a severe stroke in her mid 20’s. Two young children and a partner who couldn’t cope so walked out.

Learning to walk, (somewhat wonky and with aids) talk and then relearning how to read at the same time as her children.

Care and support is somewhat sketchy

I am so sorry you have no support Fallingstar you need to take care of yourself, which I know from your posts is difficult for you 🌺🌺🌺

I totally agree.

I had hoped that things were changing, but appear not.

I know several people who have had strokes. And had various degrees of care and progress.
One person in particular, like your DH, had lamentable care. Didnt help that she wasnt found by anyone for 7 hours or so.