Stroke - the poor relative 😢

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.

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 🌺🌺🌺

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.

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.

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

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.

Thanks for replies.
xx

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.

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.

wondered not eondered

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.

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.

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 💐💐

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.

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.

Fallingstar

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.

Thanks Fallingstar. Will invite you over to our luxury place when the money comes through! 🤣🤣

That is pretty much where we are now in your final sentence.

Back in 1980 my Grandma (80) had a stroke during the night and was found, on the bathroom floor, by the warden of her sheltered flat in the morning.

Tests revealed the extent of the damage to her brain was so severe that if she'd been resuscitated she would have had no quality of life (vegetable was the word used) until the next stroke which would kill her.
Doctors advised letting nature take its course.
She was kept clean, comfortable and turned regularly in bed in hospital, but given no food or fluids.
Mum sat with her and Grandma died peacefully a week later.

It was the first experience I had of palliative care (I was 23) and it was obviously very sad, but I agree that my Mum made the right decision for her own mum.

V3ra

Back in 1980 my Grandma (80) had a stroke during the night and was found, on the bathroom floor, by the warden of her sheltered flat in the morning.

Tests revealed the extent of the damage to her brain was so severe that if she'd been resuscitated she would have had no quality of life (vegetable was the word used) until the next stroke which would kill her.
Doctors advised letting nature take its course.
She was kept clean, comfortable and turned regularly in bed in hospital, but given no food or fluids.
Mum sat with her and Grandma died peacefully a week later.

It was the first experience I had of palliative care (I was 23) and it was obviously very sad, but I agree that my Mum made the right decision for her own mum.

I think your mum made the right call but if course it is really sad 💐

This is info I found when I googled -

Stroke research receives significantly less funding than conditions like cancer or coronary heart disease due to historical fundraising gaps, smaller dedicated charity bases, and lower public and political profile relative to its massive health burden.

Key Reasons for the Funding Disparity

• Weaker Charity Sector: Dedicated stroke charities (such as the Stroke Association) raise a fraction of the funds collected by massive, high-profile cancer charities (like Cancer Research UK) or heart disease organizations.
• Lower Public Profile and Awareness: Stroke is often viewed as an acute event or an inevitable part of aging rather than a chronic, complex condition requiring deep scientific pipelines, leading to less emotional or public mobilization.
• Perception of "Readiness": Some pharmaceutical and private sector funders have historically perceived neurological and cerebrovascular science as harder to translate into blockbuster drugs compared to oncology, shifting the financial burden onto governments and smaller charities.
• Smaller Academic Research Base: Because stroke has traditionally received less grant money, fewer university departments and clinician-scientists have specialized in stroke research, resulting in fewer high-quality grant applications submitted to major funding bodies.
• Disproportionate Funding vs. Burden: Global data show stroke accounts for a massive share of death and long-term disability (disability-adjusted life years, or DALYs), yet it frequently captures only about 9% to 10% of combined research dollars compared to over 60% for cancer.
For example, in the UK, medical research spending per stroke survivor has historically lagged far behind amounts spent per patient on conditions like dementia or cancer

Strokes actually come in two varieties. About 80% of strokes are ischemic strokes; they are caused by a blood clot in the brain that cuts off blood supply to brain tissue. (This is very similar to a heart attack, but it occurs in the brain.) This type of stroke can sometimes be treated with clot busting medication, provided that the stroke occurred within the last few hours and the patient meets the criteria. The other 20% of strokes are haemorrhagic strokes. These are caused by a bleed in the brain. These are most commonly treated with neurosurgery.

I live in Canada, and I am fortunate to live in an area where we have good quality stroke care. My grandmother experienced an ischemic stroke a number of years ago. Fortunately, it was identified immediately - she was already in hospital for an unrelated issue and the stroke occurred while she was awake and had visitors. She was not eligible for clot busting medications, but she still received other treatment and eventually was transferred to a stroke unit at a rehabilitation hospital. She made almost a complete recovery. Her speech was mildly affected and this was worse when she was tired, but she regained full function of her hand and you couldn't really see a massive difference in her handwriting eventually as compared to how it was before the stroke.

As a nursing instructor, I have previously taken students to a medicine unit that specialized in acute care of older people and acute stroke care. One patient particularly stands out to me. He was a very nice man with a lovely family. The students got a new patient or new patients every week, and because his was a good teaching case, several of my students cared for him. The first week, he was pretty much confined to bed. By the time we finished our rotation, four weeks later, he was up, dressed, and WALKING with a physical therapist. It was a wonderful experience for my students to know that he was recovering and to know that they had helped to play a part in that.

I have such empathy for all on here remaining unsupported.

All I can compare it with is when DMiL had several TIA’s which left her with vascular dementia, which went undiagnosed for a while due to her schizophrenia until a warden in her part sheltered accommodation found her in the floor, and called an ambulance and our local hospital did a CV brain scan, at DH insistence.

It was quite a scan as she’d had a least two “sessions” of electric shock therapy back in the 60’s to “cure” her schizophrenia and all her medical records “disappeared”.

Anyway, it was a battle, DH and both worked full time and getting her carers was a mission. Then DH had a heart attack mid COVID in lockdown, and left me to carry the mantle.

Several battles with special care later, we found her very suitable residential care, I transferred to full time working from home and with the almost adult children at home, we managed to somehow muddle through.

Social Care, not Special Care!

agnurse

Strokes actually come in two varieties. About 80% of strokes are ischemic strokes; they are caused by a blood clot in the brain that cuts off blood supply to brain tissue. (This is very similar to a heart attack, but it occurs in the brain.) This type of stroke can sometimes be treated with clot busting medication, provided that the stroke occurred within the last few hours and the patient meets the criteria. The other 20% of strokes are haemorrhagic strokes. These are caused by a bleed in the brain. These are most commonly treated with neurosurgery.

I live in Canada, and I am fortunate to live in an area where we have good quality stroke care. My grandmother experienced an ischemic stroke a number of years ago. Fortunately, it was identified immediately - she was already in hospital for an unrelated issue and the stroke occurred while she was awake and had visitors. She was not eligible for clot busting medications, but she still received other treatment and eventually was transferred to a stroke unit at a rehabilitation hospital. She made almost a complete recovery. Her speech was mildly affected and this was worse when she was tired, but she regained full function of her hand and you couldn't really see a massive difference in her handwriting eventually as compared to how it was before the stroke.

As a nursing instructor, I have previously taken students to a medicine unit that specialized in acute care of older people and acute stroke care. One patient particularly stands out to me. He was a very nice man with a lovely family. The students got a new patient or new patients every week, and because his was a good teaching case, several of my students cared for him. The first week, he was pretty much confined to bed. By the time we finished our rotation, four weeks later, he was up, dressed, and WALKING with a physical therapist. It was a wonderful experience for my students to know that he was recovering and to know that they had helped to play a part in that.

Interesting post, thank you agnurse. My husband’s Stroke was a haemorrhagic stroke and never once did they mention any kind of surgery. They said it was very serious but he was pretty much left to rest in bed for 3 weeks. No physio, nothing.

After 3 weeks he was moved to a stroke rehab unit which should have been great but it was a waste of time. It was seriously understaffed so he often spent 9 hours in a wheelchair. There should have been 5 physios but there were only 2 for 24 patients. There was a purpose built gym but it was locked the whole 3 months he was in there.

Maybe you do things differently in Canada.

This is so true. Our local hospital had a great stroke unit up until a couple of years ago when the HA decided to create “centres of excellence” in other words, make cuts. Now a stroke victim a mile from the local hospital faces an ambulance trip of 50 minutes. By which time, most will be dead. Sounds like an elderly cull.