Stroke - the poor relative 😢

Sueinkent

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.

I just read that back to myself and it sounds very callous. I didn’t mean it to. Iam very angry about what is being done to our health service and aftercare. Fallingstar, I am full od admiration for you and your husband’s determination. Let’s hope things improve.

My husbands too was a haemorrhagic stroke 4 years ago this month, he was getting the use of his hand back when he developed a tumour on the brain, he survived surgery and is still here, here too there is very little due to cuts in the budget, he had about 6 weeks physio and that was it, I do get time free to myself ,he goes to a day centre 3 times a week 10-3pm, I think he has improved over the years though slowly, but he has to persevere and be coaxed into walking, with his quad stick, his swallow is affected so has to have food chopped up and definitely no noodles even though he used to love them, its a slow improvement but even his swallow has improved from the baby food consistency he had in the beginning, his speech has improved but has to think for a little before he can answer, some memory probably won't come back as that part of the brain has been damaged.A carer is provided that gets him up in the morning washes and take him to the toilet , I sort the day and a carer comes to check on him afternoons then I have a private carer to put him to bed in the evening, I do hope you too have help?

My Dh had a stroke 18months ago and his treatment and care has been first class.

While he was in hospital in the Stroke ward and conditions were excellent. He was in for a week with regular physio, tests, scans etc. and when he was ready to come home , they made sure we had all the necessary equipment. Nothing was too much trouble.
Physios and therapists came daily and on some days we had 2 and even 3 coming to give him excercise and strengthening routines, speech therapy, motor skills and brain teasers. They came for 6 weeks.

Another banister was installed which has been a life saver to help him get up stairs, and hand rails positioned in strategic places. Follow up appointments and home visits continued.

I really can’t praise the NHS enough, and we’re so grateful to them.

Gingster

My Dh had a stroke 18months ago and his treatment and care has been first class.

While he was in hospital in the Stroke ward and conditions were excellent. He was in for a week with regular physio, tests, scans etc. and when he was ready to come home , they made sure we had all the necessary equipment. Nothing was too much trouble.
Physios and therapists came daily and on some days we had 2 and even 3 coming to give him excercise and strengthening routines, speech therapy, motor skills and brain teasers. They came for 6 weeks.

Another banister was installed which has been a life saver to help him get up stairs, and hand rails positioned in strategic places. Follow up appointments and home visits continued.

I really can’t praise the NHS enough, and we’re so grateful to them.

So glad to hear there is good practice Gingster, and how much of a help it is when this happens.

We are in the same position. DH had a brain bleed 12th Feb 2025. NHS stroke ward was so understaffed that if they managed to get him out of bed at all, it was sometimes not till the afternoon. If he soiled his pad he was offered the choice of going back to bed for a change and staying there for the rest of the day, or sitting in it if he wanted to stay up. NICE guidelines say 3 physio sessions a day, he was offered two a week.

Moved to the rehab unit after 5 weeks, same dangerous understaffing. One evening I found there was just one auxilliary as the sole member of staff on duty for 25 bedbound patients, unbelievably dangerous. I took out money on the house and moved him to a private hospital. Wonderful care but absolutely nothing for him when he got home.

He was left with no movement down his right hand side, and although his speech had improved, he lost it overnight, so cold not tell me what he needed. He was using a conveen at night at would sometimes pull this off and wet the bed. Changing the sheets on your own at 2.00 am for a patient who cannot move is not easy!

He has choking sessions, so cannot be left to eat on his own. Sometimes diarrhoea, which means getting the bulk off pants and trousers and rinsing them out before washing them. He has a persistent cough which makes his bad leg fly up in the air and land in painful positions, especially at night.

I had to fund a stair lift, an electric wheelchair, a converted shower room, an electric bed, a converted downstairs loo, a ramp to get in and out of the house, and two shower chairs to roll over the loos upstairs and downstairs. The only things the NHS provided were two transfer hoists. They lost his physio referral and it was 6 months before they gave him his statutory six sessions.

So I had to pay for a private physio too, at £139.00 a session.

The NHS provided 4 weeks of carers, they said he needed two carers three times a day. When that stopped we were in our own. At first I paid for two calls a day, before we cut that down to one so that he could go to bed at the time of his choosing. Now I do the lot.

We did apply for CHC funding, but at the assessment a physio turned up late, took over the meeting and dismissed everthing we said, she said the money should go to those more in need!

He has improved, 11 months post stroke he started to walk a little. It is still very slow, a huge effort dragging his foot, using a quad stick. He can operate the shower himself and pull down a towel to dry the bits he can reach. His speech overnight is usually okay now, although a recent cold and UTI knocked it off again. He can use a pee bottle on his own in bed, so I don't always have to wake up for the three or four wees a night.

His cognition is fine, one blessing, but we both feel it would have been better if he had not survived. He would have escaped the past 20 months of frustration and despair at his condition, and I could have been starting to rebuild my life.

Apologies for the long post!

So sorry you are also going through this
B9exchange. My DH can walk very slowly with a stick but drags his right foot, and his balance is not good so I have to hold his other arm. Am afraid his cognition was affected and his eyesight is also impaired.
In hospital he would pull out the tube that fed him in the night and pull off his pad, one morning I got there at 11 for visiting and nobody had checked him, so he was in bed, having pulled off his pad and soiled the sheets, and his food tube was hanging by the bed. My eldest DD was with me and that was something she should not have had to see. I played merry hell.
Stroke is so dehumanising, and so little is done about it. I would wish my DH had had a heart attack instead, then he could have had a bypass and recovered, or taken meds for the rest of his life but at least ‘been himself’.

Yes, unless you are caring for a stroke damaged patient it is nigh impossible to understand exactly how cruel it is for survivor and carer. Before DH's stroke I tended to think that if you survived a stroke, then you would slowly recover. There are quite a few in our congregation who have had a stroke, it has either proved fatal shortly afterwards or they are back on their feet talking normally. DH is the only one stuck in this frustrating half way house.

Gingster

My Dh had a stroke 18months ago and his treatment and care has been first class.

While he was in hospital in the Stroke ward and conditions were excellent. He was in for a week with regular physio, tests, scans etc. and when he was ready to come home , they made sure we had all the necessary equipment. Nothing was too much trouble.
Physios and therapists came daily and on some days we had 2 and even 3 coming to give him excercise and strengthening routines, speech therapy, motor skills and brain teasers. They came for 6 weeks.

Another banister was installed which has been a life saver to help him get up stairs, and hand rails positioned in strategic places. Follow up appointments and home visits continued.

I really can’t praise the NHS enough, and we’re so grateful to them.

Gosh that is amazing Gingster. I am wondering which part of the country you live in. Really pleased for you.

My advice to people reading this because none is ever given about how to prevent stroke as best you can, sometimes is impossible but for my DH it was preventable.
If you feel your heart races or you have palpitations check it out it could be atrial fibrillation and if this is treated your chances of getting a stroke this are greatly reduced, better still invest in a smart watch which will let you know if your heart races when resting, it can’t detect AF but it can alert you to the possibility of this.
Check your BP, if you have been on the same dose for ages and your reading is higher get this checked and up your dosage.
Are you on blood thinners?? If not check with your GP to see if you should be on them, blood thinners are a real game changer.
And if you feel ‘off’ with a really bad headache or neck pain and sudden loss of balance or just feel ‘heavy’ and unable to concentrate, don’t look for the stereotypical droop on one side get it checked out pronto.

My husband too says he wishes he never came out of hospital.

Shel1951

My husband too says he wishes he never came out of hospital.

Is a lonely journey Shel1951, a very lonely journey, for those seriously affected by stroke, and for those caring for them.
Wishing you and all those on the journey all the best 💐💐💐

I suffered a mild stroke four years ago following open heart surgery for a mitral valve repair. The after effects were nothing like as severe as many posters have described but I have lost the ability to retain information and it did change my personality in the early months.

It was not identified until several months later when a change in my vision was spotted. A MRI brain scan confirmed the opinion of the opthalmologist.

Since then, I have rearched the subject and have found contact with an online group called the Stroke Survivors Group. They meet each Thursday from 1.00p.m. UK time via Zoom.

Here is the link:-

bit.ly/StrokeCafe

New members are always welcome. It is run by a stroke survivor called Simon. Here is the link to the website:-

stroke.logicalmodel.net/flarum/public

Ashcombe

I suffered a mild stroke four years ago following open heart surgery for a mitral valve repair. The after effects were nothing like as severe as many posters have described but I have lost the ability to retain information and it did change my personality in the early months.

It was not identified until several months later when a change in my vision was spotted. A MRI brain scan confirmed the opinion of the opthalmologist.

Since then, I have rearched the subject and have found contact with an online group called the Stroke Survivors Group. They meet each Thursday from 1.00p.m. UK time via Zoom.

Here is the link:-

bit.ly/StrokeCafe

New members are always welcome. It is run by a stroke survivor called Simon. Here is the link to the website:-

stroke.logicalmodel.net/flarum/public

Thanks for this and if anyone else has suffered a stroke or cares for someone who has suffered a stroke and can offer links to helpful groups or sites, or just wants to share their story please do.

Reading other posts some like a lady I know had 2 strokes and still can walk talk and climb stairs,unfortunately that's not everyone, I believe my husband didn't get the help because of his age and ability to recover enough to get benefit from extensive physio, a younger man in the bed opposite my husband was transfered for treatment to a specialised rehab, DH Didn't qualify, he has no use of his left arm and his leg drags, we had to sellup and move to a bungalow as our bedroom was upstairs, sometimes he loses sight in one eye,though not completely, there is hope for some,a lady at the church had 2 strokes 4 years apart and regained use of her limbs etc after time, just says one hand is weaker ,
And at the physio dh had there were others that were much more mobile,one lady drove herself to it,
I just keep on hoping and praying God's will not mine whatever that will be.

Further to my earlier post, I had attributed my change in personality to the effects of the operation and the somewhat uncaring nursing care I had received afterwards. Once the stroke diagnosis had been confirmed with a brain scan, it enabled me to understand what had affected me mental condition. Until then, my husband had been puzzled by the change in me - from being an outgoing, generally positive person to being depressed and overly emotional.

I am fortunate not to have suffered any noticeable physical limitations from my stroke but I was still grateful when Simon responded to my post on the Stroke Association forum and invited me to join the online Stroke Café. There I found a welcoming group of people, most of whom had suffered debilitating physical effects from their strokes. Sharing our experiences made me realise that I needed to pick up the threads of my life again. I’m pleased to say, I have returned to being on stage with a local amdram company (mostly walk on parts!) and last year, I sang in a successful performance of Bach’s B Minor Mass. This proved to be a challenging but satisfying experience although tiring!

I cannot recommend enough the value of interacting with fellow stroke survivors in sharing information and giving hope in a way that medical professionals, however expertly trained, cannot hope to do.

Shel1951

Reading other posts some like a lady I know had 2 strokes and still can walk talk and climb stairs,unfortunately that's not everyone, I believe my husband didn't get the help because of his age and ability to recover enough to get benefit from extensive physio, a younger man in the bed opposite my husband was transfered for treatment to a specialised rehab, DH Didn't qualify, he has no use of his left arm and his leg drags, we had to sellup and move to a bungalow as our bedroom was upstairs, sometimes he loses sight in one eye,though not completely, there is hope for some,a lady at the church had 2 strokes 4 years apart and regained use of her limbs etc after time, just says one hand is weaker ,
And at the physio dh had there were others that were much more mobile,one lady drove herself to it,
I just keep on hoping and praying God's will not mine whatever that will be.

Stroke is such a broad spectrum, on my DH’s ward were patients who were full conscious, sitting up in bed chatting and eating, who were able to walk out a few days later, on the stroke association forum there are people contributing on there regularly but my DH can no longer write or read, and cannot use his phone without help. Some return to work and can still drive and do most of what they did prior to a stroke.
Others, like my DH, are bed bound for months, on oxygen, fed through a tube, wearing a pad, and unable to move without assistance. Their recovery will not be so good and their quality of life will equally not be great.
It is a lottery. A stroke is like a bullet to the brain and it all depends where it hits and how badly.

I know quite a few years ago, it was common to see ads on TV telling how to spot the signs of a stroke. FAST - they were common for about a year, but why don't we see or hear them now?
Around the times of the ads, my daugher and I were working together in an office. One early morning she answered a call from our site manager and I heard her asking him some odd questions "Can you raise you arms up and hold them there?" was one of them - she looked at me and said "He's having a stroke". She got him to pass the phone onto someone else, and I heard her ask him questions, she asked how long he had been slurring his words, had his face dropped to one side, and then told him to call 999.
He had already left site and was going home, so she called his wife and told her to call 999 and say he would be there in about 5 minutes. The ambulance was brilliant, they arrived the same time as Chris, realised he was having a stroke and took him straight to a&e.
The whole scenario was scary (including him driving!!) but he did get some urgent help. Sadly, the after effects took his life 12 months later.
We need to get FAST more widely known again.

I agree 100% with OP .My DH also had a stroke 18 years due to AF which affected his mood vision memory word finding etc . Yes hes improved an awful lot but some effects are permanent. Somehow I think having a stroke doesn't get much support in general. Maybe because they are all different. Its good that Gransnet is highlighting stroke support in this thread . We did get some support from our local think ahead stroke association at Ashland house in Wigan but other than that very little was given . I do think stroke survivors should get more support and fund raising. Apart from anything else it can affect all ages and is so common . It doesnt seem to be discussed enough .

There is a lot of research into stroke . The most important thing is to get the person to a hospital as soon as possible . When calling an ambulance state that you think the person is having a stroke , even if you’re not sure . With a blood clot speed is essential . A blood clot caught early can be given medication to break up the clot and either stop the stroke or minimise the results and damage.
Obviously they can’t tell if the stroke is caused by a clot or a bleed until tests are carried out. Both have devastating results but both can be helped .
There has been an advertising campaign on the tv for a long time warning about the need to act fast .

Same here DH was 62 having his stroke, although he was a T1 diabetic for 15 years before that, he has always been slim, non smoker, moderate drinker and even his diabetic consultant said he was the last person he expected to have had a stroke. Care has been patchy and time limited after care under the NHS, although he goes for BOTOX injections every 3/4 months. We pay privately for rehab exercise . There is a local, award winning , whichstroke group which we attended for a while but he didn't really gel with it, but that's just him and it made me anxious , so we stopped attending. We are 9 years down the line and if I am honest mobility is deteriorating . We are living with it but I am wondering what will happen in the future.

Thisismyname1953

There is a lot of research into stroke . The most important thing is to get the person to a hospital as soon as possible . When calling an ambulance state that you think the person is having a stroke , even if you’re not sure . With a blood clot speed is essential . A blood clot caught early can be given medication to break up the clot and either stop the stroke or minimise the results and damage.
Obviously they can’t tell if the stroke is caused by a clot or a bleed until tests are carried out. Both have devastating results but both can be helped .
There has been an advertising campaign on the tv for a long time warning about the need to act fast .

I just want to say that telling the 999 service you think you have had stroke DOES not get you priority these days and waiting times can run in hours. I was told when he had a second mini stroke in 2020 to get him myself, He had blood test and a scan to be told hours later if was a TIA and given an aspirin and appointment for follow up a week or so later.
My DH was lucky as it was pre Covid the first time he did get the clot busting drug within the time frame, but he was still left with mobility problems so it isn't always the silver bullet it is described as.

My Father had a severe stroke in 1976. He was paralysed down his left hand side and could not speak.
He was moved from the general hospital to a Geriatric Hospital - places that no longer exist- but this did provide some respite for the carers and was completely free. He came to live at home later and my Mother looked after his every need until he died about seven years later. BUT the Geriatric Hospital provided long term respite every other weekend, sending a taxi on the Friday and bringing him back home early on Monday mornings. With that extra support, my Mother, who was well in to her seventies herself, was able to carry on looking after him until his death.
How sad it is that there is so little support available now - fifty years later.

I agree. I know s lovely young man,29 years old, who I have known most of those years. He had a stroke gouple years ago. He didnt know what it was but had trouble with his eyes, went to opticians who sent him straight to hospital! He is ok but it has affected his one eye (now Little vision) and his hearing. I have high cholesterol so am aware of the risks but my Dr's surgery is getting worse by the year. Even the nurses who do bloods say its a total shambles and very poor. When you have to remind them to book you in for blood tests so that they arecready for a follow up appointment they sent it is worrying.

A lovely man we knew (in his 80s) had a severe stroke and was left with limited speech and movement. His rehab care on the NHS was very limited so his wife sent him for private care for a few weeks but he didn't really improve much.
He lived for about six years with a good quality of life because they paid for 24 hour living in care and installed all the equipment that they needed. Heaven knows what it cost but his wife always felt that it was worth every penny.