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.
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.
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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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