Stroke

Major disability after a stroke

Stroke can sometimes cause severe and lasting disability, particularly in elderly people. This can lead to loss of independence and the need for long-term care either at home or in a nursing home. Major disability always involves impairment of more than one function' for example, loss of power in the right side is very frequently accompanied by loss of speech, and severe strokes of all kinds can be accompanied by loss of awareness, exhaustion, frustration and depression. Some strokes may also affect control of the bladder or bowel, or the ability to swallow properly. All major strokes affect mobility, and in those whose mobility was already impaired this can lead to dependency on a wheelchair, or sometimes the need for residential care. Severe strokes can place a great burden on the coping mechanisms of carers and family as well as patients.

The variety of disabilities which stroke can cause are illustrated in the section 'What problems did I have, and why?' Lasting inability to stand and walk independently is the most fundamental problem for many. The provision of suitable aids can make a big difference:

An electric wheelchair has been excellent because it has given him independence.

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Age at interview: 52

Sex: Male

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So you use the wheelchair now. How have you found having to use the wheelchair?

This chair is a Godsend. Well, I got one from the NHS. That's' good and then I got this one from my sister and my brother in law. It was his mother's and she died and it was just sitting in the garage, so they said, 'Look sooner lying there, could you use it?', so I got this one and just, as I say, it's great for, well, manoeuvring you see around the place here and if I want, I just go away out and go for a run round the village and I go out, I work in the garage on my plants and stuff like that. Independence it gives you.

On the other hand, some younger people who have suffered strokes are reluctant to have permanent adjustments made to their homes which reflect their status as "disabled"'

She refused to have adaptations made to her house because she did not want it to reflect her...

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Age at interview: 54

Sex: Female

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[Laughter] when I came home, they did an assessment before I came home to see if I wanted, there needed to be any adaptations done to my house because obviously I'm in a house, I've got a house with stairs and I had to get up stairs. And I had an obsession about my house, not reflecting in any way the fact that I am now disabled. So I refused to, I didn't want another banister put up on the left hand side of the staircase. In fact, I've just had a banister put up on the left hand side of the staircase last year [laughter] but back then I wasn't going to have anything done. No, I wanted nothing. I wanted no trace of my disability, mirrored in my home.

Problems with speech and swallowing can be major problem in the initial stages of recovery from stroke but can be overcome by suitable therapy and other measures such as thickening of drinks.

Has to have drinks thickened with a commercial thickener to avoid liquid trickling into his lungs...

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Age at interview: 62

Sex: Male

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Wife' But his speech was affected because of the ataxia, it's the muscles round the mouth not being able to move properly that's the cause. And swallowing's affected, so we had to, he has to have everything thickened now.

Husband' Eating tends not to be a problem but swallowing drink is difficult.

Wife' Well, to start with, you had to have your food mashed up.

Husband' Yes. But not now.

Wife' No.

Husband' Now I think the problem basically is that if a drink hasn't, isn't thickened I tend to cough a lot. If liquid trickles down from my mouth into my lungs, they can't do anything about it, so they, they insist that all my drinks are thickened because then my mouth knows to shut the valve to the lungs and, and it means basically I can't drink fizzy drinks because thickener doesn't work in them.

How do you find having to have the thickened drinks?

Husband' Well, you, it's like so much, you learn to get used to it. I would, would prefer not to but in another sense I think if [my wife] is happy to add the thickener, it's better to accept it because actually it doesn't put any more pressure on [my wife] and they said they'd try and do some more tests sometimes and I had a couple of tests early on with a barium meal and they took x-rays of my throat to see what I was swallowing and they decided that it didn't change. I'll probably at some stage need another test but until then I'm quite happy to put up with it. It is a problem more because my wife needs to remember it whenever we go out.

Wife' I have to have my little pot of white powder in my handbag if we want to drink out anywhere.

Husband' And like lots of these things, you know it's there and it is different but you learn I suppose to put up with it.

Problems with bowel and bladder control can cause distress and may need repeated attention from health professionals.

Describes bowel management and problems of infection with internal long-term catheter use that was...

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Age at interview: 69

Sex: Male

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Wife' Oh yeah. When [my husband] came home from the rehabilitating hospital, he had a catheter and he also had to get a nurse in three times a week for a bowel management because they said he'd no bowel control. He gets an an enema...

Husband' Excuse me.

Wife' 'three times a week, Monday, Wednesday and Friday but after, it must have been about a year, the catheter was always blocking and there was, it should last about two months but one month you'd to get about four, didn't you, in a month and he's in a lot of pain when it blocks. So' I'd heard about these sheaths we got him them, we done away with the catheter and he , it's like a sheath, but they tend to come off quite easy, you know. So he was wet quite a lot at first but once I got used to putting them on, they stayed on good but when I took the heart attack, he had to get put in a nursing home and they couldn't put on the sheaths and he was wet all the time, so the nurse went in put a catheter in'

Husband' That's right.

Wife' 'and he's had the catheter, that's four months but we've been having problems with that again because that's about four catheters again you've had in the last month.

Husband' Yeah.

Wife' So we might have to go back to the sheaths but that's the only problem with them. There's a lot of people can't put them on [laughs].

The need for help with basic functions can lead to frustration and embarrassment, especially in the early stages of recovery in previously independent people. Stroke can also lead to loss of emotional control which can be distressing both for individuals and carers. In addition people severely disabled by stroke often feel guilty and anxious about being dependent on others.

He broke down in the hospital when he had to be hoisted onto the toilet but although he initially...

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Age at interview: 60

Sex: Male

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One thing you just touched on earlier was the, I suppose you'd mentioned about depression and perhaps feeling very emotional and crying at different stages. Would you mind talking a little about that?

No, one of the, one of the symptoms of stroke is emotional instability if I can put it that way and I remember I burst into tears the first time I, my, my son came into the ward. My youngest son, my eldest boy is in, in the Navy and he wasn't able to see me at all during the stroke, but yes, and, and I got very emotional a few times and when I was taken to the toilet the first time in this sort of cage, I mean, I burst into tears after that because I thought, 'Oh dear, what on earth, you know, what on earth, am I going to be like this for the rest of my life?' being carried to the loo like a, and I overcame that by, by will and I turned it into determination that I was going to get better. I wasn't going to let this thing beat me into the ground. But I'd say most people get emotionally, very emotional. It's probably something to do with hormones or the brain or something.

Was worried his wife might leave him but a psychologist helped him understand that this was...

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Age at interview: 52

Sex: Male

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What sort of, you said that you had concerns that you talked to the psychologist about? Can you tell me the sort of things that you were concerned about?

Well, just about... well, virtually a cripple or whatever, because I used to be fairly active. I run marathons and half marathons and that, raft racing and that kind of stuff, done everything. And all that stopped, will the wife still be with us or what, losing the business, losing everything. That's all sort of I had left the family. That really worried, well, what will I do when, well 'We don't need him now, what, what can he do for us? Dump him.' You know, it was silly thoughts going through your head. They weren't silly at that time.

How did the psychologist help? What sort of advice did she give you?

Well, just, likes of says that's silly. Said my wife had been at the, when I was in Intensive Care, she was there every day sitting in, she didn't go home, she sat in the hospital all day with us and everything like that. But she was 'Do you think she would have done that and all that? 30 years you've been together'. But you still think, you know, it's no joy for them, I'm a cripple. Just because we've always been, everything was done together. That's what our friends say. 'You two are joined at the hip' sort of thing. Because when we done the go-kart racing, we both pushed the go-kart to start it for my son. It was all one either side, pushing the kart to get it started. Everything was just together.

Most people with severe stroke felt that they had useful help from health professionals, especially physiotherapists, but that sometimes this was too hard to access'

In the rehabilitation gym mobility was graded from 0 to 5. He found it encouraging to look back...

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Age at interview: 60

Sex: Male

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Tell me about the physiotherapy. Presumably you had to get walking again?

Ah, yeah. There was a, there was a, there is a gym at the hospital. At the start because I couldn't move at all. They had a, I remember they have a series of numbers, zero for no movement at all and up to about 5 for relatively good moving. When I, when I first went to have my first physiotherapy, it was zero, zero all the way through and you were encouraged first of all to shuffle in and out, shuffle about in a chair, you're then, you, gradually more and more, you lay on, they put you on your back and you have to move your, your legs sideways, two legs together. You then have to move your feet and so on and gradually increase the movement according to how much mobility you had and again, this is a good way of doing it because you say, they say, 'Oh you had a, you had a zero last week, you've got a 1 this week, well done'. You know, and you, you're encouraged. You also, they also give you an aim, a goal. They say, 'Well, do you have a goal in mind? What do you want to be able to do in the next week? What do you want to be able to do in the next fortnight? What do you want to be able to do in the next month?' And you, you're encouraged to say, 'Well, I would like to be able to stand up in the next week' for example and if you can stand up, then it's rounds of applause all round, you know, and it's a very good method of making you, making sure you, forcing you to improve. Making you do this sort of thing.

She was frustrated that her husband was not helped to walk after his stroke. He later had some...

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Age at interview: 69

Sex: Male

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Wife' And then he got moved to a rehabilitating hospital for supposed to be physio, you know, he was to get there to bring him on. But when he went down there after a week, as I said, they said that he would never ever walk, he would never be able to stand and I should put him in a home because I would never manage him, it was too much work. But I kept saying, you know, I never gave up hope, I kept saying I didn't believe them, you know, and I still hoped that he would be able to get better and I phoned two private physios who were angry that he wasn't getting physio. They said he must get physio for a stroke but they wouldn't give him it so and I couldn't get home because he had a big wheelchair.

And I had carers coming in at first, you know, they came in and our own doctor came in to see [my husband] and I asked him if it was possible he could get a physio to come to assess [my husband] and he got up and tested [my husband] and he was amazed at how much power he had in his left hand and left leg, so he said, 'Oh yes, I'll definitely get a physio' so we got a physio from one of the hospitals in [the city] and, as I say, the second week she was here, she had you standing, she brought a zimmer in and'

Husband' Yeah. I mind of that now.

Wife' 'got him standing and then she got him walking. He was able to walk through to the bedroom. She even walked him outside along to the next close and back and then she was, she was like God to us, she was absolutely marvellous.

Individuals severely disabled by stroke and their families use a variety of coping mechanisms. The need for a positive attitude is mentioned frequently. Often this involves goal-setting, for example being determined to participate in a major family occasion.

Set himself a goal of being able to speak and stand for his daughter's wedding and got a standing...

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Age at interview: 62

Sex: Male

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Husband' Yes, I can't remember much more apparently I suspect because when I came out of that my mother died and really the big stroke happened after that and then I think it was a matter I suspect of finding out what I could do and what I couldn't. When I went into the teaching hospital again, I said, 'I want to learn to stand up because our oldest daughter was getting married and I really want to give her away' and so the staff and the nurses worked quite hard at making sure I could stand up and speak.

Wife' And say 'I do'. That was in the rehab unit. He went to the rehab unit at the beginning May, May the 11th and she was getting married on May 31st and he said, 'I want to be able to stand up and say I do', so that was his aim for the first 3 weeks.

And did you manage to do that?

Husband' Yes. It's the only wedding I've been to where somebody gets a standing ovation for saying I do.

Each person interviewed found a different way of addressing the sudden and massive disruption which their major stroke had caused. Many felt that they had not received all the help that they needed, but reached a stable way of managing with the help of family and others. Several found that the Stroke Association and local groups could provide useful advice and support.

Last reviewed June 2017.
Last updated August 2013