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Our Story
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This man was interviewed with his wife because he has some memory problems. He had a massive stroke at the age of 65 due to a haemorrhage in the right hand side of his brain. Taking non prescribed aspirin may have been partially responsible although he also has had high blood pressure. He now takes perindropril for high blood pressure and simvastatin to reduce cholesterol.
His stroke caused left sided paralysis which affected his mobility. He had limited physiotherapy in the hospital which his wife found very frustrating as she was determined to care for him at home and felt that they could have helped him to get more mobility. She finally managed to get him home and with the help of community physiotherapists he is able to move short distances around the house and can get in and out of his wheelchair.
His stroke has resulted in some cognitive problems (mood, memory and understanding). He is sometimes aggressive although he regrets these outburst he is unable to control them so has been given (medication) fluoxetine to help.
He suffers from incontinence and has to use a catheter. He also takes medication to help manage his bowel. His wife manages his care with the help of carers who come in every day. They have used respite care for times when she has been ill but feel that at the moment care at home is their best option. He is extremely grateful to his wife for her support. |
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His wife says that he often complains of a having a wet foot but the doctor has explained that the stroke has made his mind play tricks.
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Wife: He used to always think his feet were wet. He would say, “My feet”, and the doctor said it's just , it's the stroke, yeah … It's his mind playing tricks on him.
Husband: Aye.
Wife: There was one night when [laughs] I got him into bed, you, that's usually when he said that, “My feet are soaking” and I'd say, check, I'd say “How could your feet be wet? They're not wet”. So I went away to bed but he had me up and down till about 12 o'clock at night about 40 times shouting that his feet were wet, you know, I had to keep going through and tell him they weren't wet and I would just get back to bed and he would shout they were wet. But it's just his mind. I don't know. |
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Describes bowel management and problems of infection with long-term catheter use that was overcome by using an externally worn sheath.
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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]. |
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He feels his wife has been there for him 100% but he has taken out a lot of his frustration at not being able to do things out on her. He has been given medication which has helped.
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Husband: My wife's been 100%. Without her, I wouldn't be here today.
Wife: I'm not perfect. I try my best [laughs].
Husband: There's no woman perfect [laughs] No, no, but that's it. I'm happy enough with my life.
Wife: Yeah. And I'm happy. I mean, I I've never ever went out, I've never drank, so I never ever went out, so maybe if I'd been a woman that went out a lot, I would have taken it worse but it doesn't, I'm quite happy in the house, so [laughs] with my wee dog.
Husband: Oh yes, aye. We don't …
Wife: As long as he's OK and it's just when he takes these, I call them maddies, when he, he gets frustrated and he starts shouting and…
[Talking at the same time.]
Wife: … that upsets me.
Husband: That I curtail all that nowadays.
Wife: Well, you're, we've got you on tablets. The doctor gave you tablets.
[Talking at the same time.]
Husband: Well, I try.
Wife: Hopefully they'll help a bit [laughs].
Husband: They do help, aye, they do.
Wife: That I can't cope with [laughs].
Husband: No, neither could I. I don't want to start shouting.
Wife: I know. I know.
Husband: Stupid stuff. I mean, I wasn't like that before I took the stroke…
Wife: No.
Husband: …so how should I be like that now?
Wife: It's just the frustration the doctor said.
Husband: Well, I know that now like but…
[Talking at the same time.]
Wife: But it's horrible. I mean, the nurses tell me just to go out when he does it. Go out for a few hours but I'm always frightened in case he hurts himself because he bangs and [laughs] you know, and they said…
[Talking at the same time.]
Husband: Och, I don't do all that now.
Wife: You did [my husband]. You, I mean, it's just a couple of weeks since you done it.
Husband: Aye, but that's frustration. It's all over now. You know all that and so we get on fine. |
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She was frustrated that her husband was not helped to walk after his stroke. He later had some therapy that allowed him to get about the house.
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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. |
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His wife had been able to do most care tasks for him but still needed help and advice in the early days and after being ill herself had to call out help in emergencies.
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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. |
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The nurse persuaded her that her husband should have respite care. The first time was not successful but the second time they found somewhere with younger people which was much better.
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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. |
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Felt would have liked someone to talk to because felt very unsupported in their decision for the wife to care for husband at home after he was severely disabled by his stroke.
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What do you think would be helpful for other people perhaps in the future in the way of support? What would you have…
Wife: Well, somebody to speak to, you know, if the likes of somebody taking a stroke like what [my husband] had and right enough we, the website wouldn't be any good to us because we don't have a computer, we don't know how to work one but even just to talk to somebody with, in a similar …
Husband: Circumstances.
Wife: …circumstances, you know, and how they got on because, I mean, all I got told in that rehabilitation hospital was to put [my husband] in a home every day. They even got a psychiatrist. One day I went down and this psychiatrist, he, they'd call him in. He spoke to me for about an hour, an hour and a half trying to talk me into putting [my husband] in a home as well and I said, well, I used to come out in tears every day from that hospital, I was always crying because, I mean, if I'd been about 80 and [my husband] had been 80, OK [laughs] I would have known that I wouldn't have been able to look after him but [my husband] was only 66 and I must have just been about 64, 65 when he took the stroke so I felt I would be able to look after him, you know, and I have. |
