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Stroke

Continuing care at home and institutional care after a stroke

Stroke can result in permanent physical impairment which makes daily tasks hard or impossible. People who have had a stroke are sometimes provided with continuing care on their return home from hospital. 

People talked about a range of different support they had, including visits from a stroke nurse or community rehabilitation team, occasional help with cleaning tasks or daily carers to help with personal care. A few people that we spoke to were cared for at home by family members but had used respite care to give their family members a break. Others had eventually decided to move permanently into a care home. Some people had a hard time accessing care and wished that more had been available, particularly in the earlier stages following hospital discharge.

Difficulty accessing community services
Most people accessed some level of support in the community after leaving hospital; however some people experienced great difficulty in accessing care. Some were not aware of what was available, and had to navigate on their own, while others had difficulty accessing community care due to long waiting periods, cost, or lengthy transportation.  

 

Susan had a hard time accessing physiotherapy following hospital discharge.

Susan had a hard time accessing physiotherapy following hospital discharge.

Age at interview: 67
Sex: Female
Age at diagnosis: 63
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When I was leaving hospital they said, “You can go home but you can't have any physio for two weeks.” So I said, “Fine, I'll go without it for two weeks, I'll try and make something up.” So that, that was two weeks out of the three months which are most important to your...
 
Recovery?
 
...recovery. There's a short time where you get the maximum gain in your recovery. So that was two weeks of mine gone, apart from the time I was in hospital. That was two weeks of my time gone without a physio.
 
So after your hospital discharge a couple weeks went by where you didn't have any?
 
No, they warned me I wouldn't (not enough people)
 
Oh, OK.
 
But I said to the girl that was going to come, “Can you not liaise with the hospital and give me (or) send me a form with exercises on.” And she said, “No, I can't do that without seeing you.” So I said, “But I should (not)be wasting time, could you not speak to the physio in the hospital. He knows what I've been doing, he knows what I can and can't do. Could you not speak to him and then send me something you think is relevant in an envelope?” “No, I can't I need to see you.” So I said, “But I've been wasting time. You must be able to think of something that won't, you know, won't do damage that I can get on with, while you're dealing with whatever it is you've got to deal with.”“No, I'm sorry we've got to see you that's the rule.” I was very annoyed at that. And then I found she came once or twice. And then I got a phone call to say, “Sorry I can't come there's somebody that needs me more than you.” So I could quite believe that. I thought what a shame that's more time wasted. And then she said she was going on holiday for fortnight but she'd arranged cover for me. And nobody came, nobody phoned. Then the next week went by and nobody came, nobody phoned. And then went on for another few days and nobody phoned. So I phoned them and said, “What's going on?” And of course there was an apology. They don't know what went wrong but they should’ve sent somebody while she was on holiday. So that was more time in my physio that I didn't get (help) (from) her.

 

Finding useful services in the community
Some people sought out additional community supports on their own including community swim programs, programs in the local gym, or pilates and art classes. These services, which were not always known to or recommended by health professional, helped them to adapt to life after their stroke.

 

Jackie comments that nonmedical therapies like art and Pilates helped her recover.

Jackie comments that nonmedical therapies like art and Pilates helped her recover.

Age at interview: 61
Sex: Female
Age at diagnosis: 53
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And the OT came to visit me and, and they asked, asked what I might, what I’d need in the kitchen and in, you know, They’d already put.... a stair rail and so, I’d said that I could, would eventually be able to go upstairs and then in September, well no, August I suppose it was she asked if I would, she’s, said I’m, you know, “I’m sorry I’m going to have to give up.” And “What would you like to do? You know, and what sort of things are you going to try and do?” And I said I would like to try art because I’d tried it in [name of health facility] and, I’d drawn a modern sculpture of two people and I’d found it actually remarkably easy because of course I used to be right handed and I’m now left. And... so... and then I said I’ll like to do that and I’d also, also like to do Pilates. And she looked at me and she said, “I don’t think you’ll be able to do that.” And so I went along and joined, and did it.
 
I found out about it at Companion Cycling actually. They I tried a three wheeler and was surprised how easy it was. And, as opposed to a four wheeler and someone else with me doing all the work. So yeah, I’ve bought my own. And it’s, very good. I use it on hot very, I mean it, it’s you know... I’m lucky you know, these things not everybody can afford to have them but … you know, I went to a bike shop and it so happened that the one I wanted his, he had just, he had recently bought one for his mother and she went out once and then said she’d never go out again. So I was able to get a new but a lot less and, that somebody else could use … and so I was very lucky.
 
I’m allowed to use that which is wonderful and you know.
 
The art and the Pilates how just, how to go down to the adult education and sign up for them and …
 
I moved and to my local thing which is just down the road and do it there twice a week and that, again, that was just, you know, “Oh I think I’ll do that then,” you know. And… you know, these things pop up and sometimes, I don’t know why, but they do, you know.

 

 

He asked the social worker about the possibility of someone taking him out for short walks but...

He asked the social worker about the possibility of someone taking him out for short walks but...

Age at interview: 69
Sex: Male
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In fact, one time' I have a suggestion for the social people. If I get one person' who could take me out' and for walking you know, maybe I will, I'll be able to walk.

Do you need support for walking?

Yeah. Because I cannot go alone. If I fell down, I cannot get up' So I talk about that one, about social worker to give me help but they did not, they didn't do it. 'It's not our system'. I said, 'It's alright'. 

Community stroke teams/nurses
In some areas, time in hospital after the stroke is followed up by on-going support from a community rehabilitation team or a stroke liaison nurse. This support was usually offered for only a limited period of time. They were seen as a good opportunity for people to chat and ask questions about anything that was worrying them now that they were home. 

 

She found it helpful to sit and chat with stroke liaison nurse and had been provided with the...

She found it helpful to sit and chat with stroke liaison nurse and had been provided with the...

Age at interview: 79
Sex: Female
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The Stroke Liaison Nurse comes in and she sits with me and we have a chat and she, any questions and she tells me all about different things and that and she's very nice and friendly, she likes to come in. To be quite honest, I think I'll have to give her a phone because she's going to come in and see me about this new shower I'm supposed to be getting, which is very helpful too. And they were, it was them who came up to see me before I got the hand rails in the shower and the toilet. That's really a helpful thing too, and the stairs. I couldn't manage without them and they're helpful for my husband too. I, he's just needing it just as much as me [laughter]. 
 

Some people were taken out on short walks or trips in the community to help build their confidence. Others were helped to set goals for things that they would like to achieve, for example, cooking a meal, getting out to the shops, computer courses or, for younger people, getting back to work (see 'Leaving hospital' and 'Stroke recovery' Physical aspects and mobility'). 

Sometimes people were provided with additional equipment to help about the home. A few people had their blood pressure checked or were asked how they were getting on with their medication.

 

Her hair started falling out because of the medication she was taking. She told the stroke nurse...

Her hair started falling out because of the medication she was taking. She told the stroke nurse...

Age at interview: 88
Sex: Female
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And you say you have a stroke nurse come in, is that every week?

No. The stroke nurse comes a month, every month and she's very good. 

What sort of things has she helped you with?

Well, she helped me with, with my hair' My hair's falling out and'

' And medication. I'm on medication and one of the effects was my hair loss. I've lost a lot of hair and so they've changed my medication.

Do you know what was causing the hair loss? Which tablet was causing the hair loss?

The simvastatin.

Simvastatin. 

And they changed it to something else. I can't pronounce and it was the stroke nurse who did that for me. I told her.

Help at home/care packages
Sometimes it was necessary for people to have regular help from home helps or carers with domestic tasks and personal care. These care packages were usually put in place before the person left hospital and were available to both those who lived alone and those who had family support. The daughter of a woman who had a stroke advised others in her situation to make sure they fight for a care package. 

 

Advises others to get a care package arranged as she feels caring for a relative who has had a...

Advises others to get a care package arranged as she feels caring for a relative who has had a...

Age at interview: 59
Sex: Female
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Advice, that's a hard one isn't it. Advice initially is to get a care package put into place as quickly as, as possible because that is, unless the stroke was more debilitating, unless it was a paralysis or what have you, my mum there, she was very lucky that she's not been paralysed or her speech. She did get speech therapy for a little bit because it was just a tiny little bit sort of, slurred. But her speech is fine. But if it was somebody in the position my mother's in and she could go home to get this care package set up definitely to have the care package set up and again it would depend on age and illness because my mum's having the dementia as well, if it was somebody that was in the same position, stroke wise, dementia wise, to get a care package set up, as best a care package as you can possibly do. And we really, really fought for that. Then it could be somebody that's not got, as, so lucky with family as my mum is that people are popping in and out all the time. It could be somebody that's having to do it all and that person has to really try and get a bit of time for themselves. It's got to happen, it sounds selfish, and on saying that I'm not very good at taking this advice myself but I'm definitely going to make a great effort to do it. You have to try and find a bit of time for yourself because it really is, emotionally it can drain you, emotionally, a, the victim having the stroke and you being there for them. It can drain emotionally, definitely. Sentimentally and emotionally it can, it can drain you, it's very difficult. But if you get a good care package things should help a lot. 

Some people had help for just a few days a week with heavier cleaning jobs. They often felt that this was enough because it allowed them to still do some of the daily tasks and keep a bit of independence. A few only had assistance when they first came out of hospital after the stroke and were still feeling weak. After a few months they felt that they were strong enough to do things for themselves and found that care was no longer needed, or found ways to do things. 

Some needed additional, more intensive, daily care. Older people who lived alone sometimes had a carer to help them with their morning and evening routine, bathing and dressing and with preparing food.

 

Her mother has vascular dementia following her stroke and they have a tuck in service to try and...

Her mother has vascular dementia following her stroke and they have a tuck in service to try and...

Age at interview: 59
Sex: Female
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We have a book that I've asked the carers, everyone to write things in the book. I write things as well, when she's got appointments and what have you. And the carers just let me know that [coughs], excuse me, they're just letting me know, she had a good breakfast. She's got a carer who comes morning and lunch time, it's a different one at tea time, we now have the tuck in service for her for in the evening although nine times out of ten she doesn't let them change her into her nightwear. We're still happy that she's got this tuck in service because we hope it encourages her to get, she knows what time of the day it is then and they can, they don't actually put her to bed because she, oh totally, mind you they were coming quite early and it was a shame to put her to bed too early. But a lot of the time she's actually, she's not going to bed she's sitting up in an armchair in the living room. And that's quite upsetting, but my brothers, most people have told me, don't start going along at night to make sure she is in bed because I'd have to do it all the time. And that's what the tuck in service is for. And it's very hard to rely on the carers and the tuck in service when you've been used to doing it but I am learning and I'm trying not to go every day because it is expected and the trouble is when I'm not here, when I'm away on holiday or whatever, sometimes it's harder for the rest of the family to do what I do, and she is looked after between the carers three times a day and the tuck in service at night. So we've got to try and step back and let this happen.

 

A carer helps her to get in and out of the bath and puts her support stocking on but she still...

A carer helps her to get in and out of the bath and puts her support stocking on but she still...

Age at interview: 83
Sex: Female
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And what about in the bathroom? Have you had any changes in there?

Yes. I've got a special seat in the bath and I am helped, every morning I get, somebody is here to help me to get in the bath and I can sit and shower myself and it makes me feel independent as well because I can do that myself. And as long as she's there to help me and help me in and help me out and she also, while I'm in the bathroom, she does my breakfast, so when I come out, I've got my breakfast all ready as well [laughs].

And how has that worked out having a carer?

It's worked out very well. That really has worked.

And do you always have the same person coming in?

Well, usually, there, they come for quite a while and, unless they go on holiday, then get somebody else but, I've known quite a few of them and they're all, they're all, they all know their jobs and that's very good. I've been very lucky. 

So you just mentioned there that you have some special stockings that you have to wear since the stroke?

Yes. These are what they call elastic stockings and they are to support' they are support, they are support stockings. 

And how do you find putting those on?

Well a nurse comes in the morn, every morning to put them on, to help, to put, well, she does put them on and I can take them off myself at night. 

Carers were sometimes employed to assist with the most personal parts of care such as bladder and bowel management. Although this was very difficult to accept it allowed people to stay in their own homes and took the pressure off other members of the family.

 

His wife had been able to do most care tasks for him but still needed help and advice in the...

His wife had been able to do most care tasks for him but still needed help and advice in the...

Age at interview: 69
Sex: Male
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How about when you had to use the hoist?

Wife' I couldn't use the hoist on my own. I didn't know, it was two carers came in at first. I mean, I didn't know anything when [my husband] come home, even much about wheelchairs or these night bags. I mean, I remember one time , he, he gets, he has a bag on all the time, well, when he had the catheter and you attach a night bag at night and the urine goes through the smaller bag into the night bag, it sits in a basin on the floor and it wasn't going through so I phoned the nurses that are on at night and she said to me, 'Oh you'll have to put another night bag on' but I didn't [laughs] I said, 'Oh, I've never done that', she said, 'Well you're away to learn' and right enough she talked me through it and so I've gradually learned to do everything, you know, I could do it except for giving him the enema [laughs] and [the nurse] says I could even do that, couldn't she? [Laughs].

Husband' Ah well, that's right.

Wife' But I'm not going to start that [laughs].

I mean, before I took the heart attack, you, you had diarrhoea, well there was one day four times I had to clean him, you know, and it was really a lot of work. That's probably [laughs] how I ended up taking a heart attack. I should have really, because, he has community alarm, he can press the button, you know, and people would come in to help but I didn't like asking them to help because I felt it wasn't fair on [my husband], young girls coming in, you know, and seeing him like that because he felt bad about it but now I have to phone for them.

Husband' It doesn't bother me now.

Wife' Aye. You've got used to it.

Husband' Aye, it doesn't bother me at all now. I very seldom get them in like.

Wife' No, it's not so bad now. It's only now and again.

Having carers did not always work out. Sometimes getting into the house was a problem because the carers did not have keys and the person could not get to the door. One woman had overcome this by getting a key safe with a code fitted outside her mother's door. Sometimes carers were not able to help with heavy lifting because of health and safety. A few people found it difficult if they did not have the same carer most of the time.

Having a carer made some people feel they had lost their independence and they eventually decided they could manage on their own. Others said that they could keep enough independence by still doing some things for themselves.

Going into care and respite care
A few people that we spoke to had eventually had to go into care or had used occasional respite care.

Respite care can give families a rest or can be used in an emergency when the care giver in the family is unwell. A woman who had resisted her husband going into permanent care eventually accepted that respite care was a good idea when a nurse advised her that her health was beginning to suffer.

 

The nurse persuaded her that her husband should have respite care. The first time was not...

The nurse persuaded her that her husband should have respite care. The first time was not...

Age at interview: 69
Sex: Male
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How have you come to the decision to have some respite care?

Wife' Eh, well, it was the nurses kept on. They kept on at me that, to put him into respite but I didn't want to do it but eventually they talked me into letting, and he went into one but he was only in two days and he was soaked all the time. They couldn't put the domes on and my son went up at night to see him. I'd been up in the afternoon. He was sitting in his room on his own, there was no TV or anything and when [my son] went up at night again, he was sitting soaking in his room, so [my son] phoned me up and he said, 'Mum, you'll have to take him home', so I phoned them up and said, 'I'll be up tomorrow morning for him' and I brought him home. But the one that he was in when I had the heart attack'

Husband' Yeah.

Wife' they were nicer in there. You were still wet'

Husband' That's right, yeah.

Wife' 'but they were awful good, weren't they? 

Husband' I can't mind too much about that other one, you know.

Wife' So he was there five and a half weeks, it wasn't so bad but, as I say, it was all really old people and he just sat in his room all the time breaking my heart.

But this one you're going into now'

Wife' It's good because there's younger people there, you know, and he's, you're able to speak. You enjoyed it that last time.

Husband' Aye, that's right.
 

People sometimes end up in permanent care because their care needs after a stroke become too much for their family or because there is no family support at home. 

We only spoke to a few people whose families could no longer cope. Whilst some were very resistant to the idea of care homes others decided it was the best thing even though it meant they could no longer be together. One woman whose husband had gone into care when she became ill realised that her husband would actually have a better quality of life and more company in the home although she regretted not being able to be there for him.

 

Her husband initially went into care because she was ill and couldn't look after him. She...

Her husband initially went into care because she was ill and couldn't look after him. She...

Age at interview: 69
Sex: Male
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Wife' [My husband] came into a care home about six months ago because I suddenly had a stomach disorder out of the blue, it was extraordinarily painful and it lasted in fact quite a short time but, you know, it needed to be explored and so on. And so [my husband] was, you know, the family organised for [my husband] to come into care. But about the same time I developed another condition, a muscular condition which' although it's really well handled by medication, it's a bit prone to come back by too much pushing and lifting and that kind of thing. But that's not really the whole reason why you're still in care, is it, [Husbands name]?

Husband' No.

Wife' I thought that there'd be more kind of life going on here really than at home when I couldn't take you out and about like I used to do. You know you'd be reliant on, you know, the odd friend dropping by, the children dropping by. I don't know whether it's worked out like that, but that was what, well that was what we thought. 
 

The person with the stroke sometimes realised that their relative's health was beginning to suffer and helped make the decision about going into care. 

 

He realised that his wife could no longer lift him if he fell so he decided it would be better...

He realised that his wife could no longer lift him if he fell so he decided it would be better...

Age at interview: 80
Sex: Male
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Do you mind talking again about the time that you and your wife decided it was better for you to come into the nursing home?

Well, it's, it's OK, go, go ahead with that but anyway' it was, it was me that decided in a way because I was watching her and she was getting thinner and thin every day and then she was worried about no being able to lift me and' decided, ken, this can't go on' She says, she said, 'I, my back might go when I'm lifting you' which was, could true enough. I said, I said, 'Well', I said, 'You've been bothered with your back for ages'. She said, 'Aye' but anyway' that was alright and, and she said, 'Well, I'll tell the doctor' and it was him that actually got me here. [My GP]. He said, 'I'll, I'll look for a place for you' and this is the place he got.


 

Last reviewed June 2017.
Last updated August 2011

 

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