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 withNo, 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.

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.

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.

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 shes very nice and friendly, she likes to come in. To be quite honest, I think I’ll have to give her a phone because shes 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, hes just needing it just as much as me [laughter].

And you say you have a stroke nurse come in, is that every week?

No. The stroke nurse comes a month, every month and shes 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.

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 shes 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.

We have a book that I’ve asked the carers, everyone to write things in the book. I write things as well, when shes 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. Shes 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. Were still happy that shes 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 shes actually, shes not going to bed shes 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 weve got to try and step back and let this happen.

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 shes 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.

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].

HusbandAh well, that’s right.

WifeBut 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.

HusbandIt doesn’t bother me now.

WifeAye. You’ve got used to it.

HusbandAye, it doesn’t bother me at all now. I very seldom get them in like.

WifeNo, it’s not so bad now. It’s only now and again.

How have you come to the decision to have some respite care?

WifeEh, 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’

HusbandYeah.

Wifethey were nicer in there. You were still wet’

HusbandThat’s right, yeah.

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

HusbandI can’t mind too much about that other one, you know.

WifeSo 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’

WifeIt’s good because theres younger people there, you know, and hes, you’re able to speak. You enjoyed it that last time.

HusbandAye, that’s right.

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]?

HusbandNo.

WifeI thought that thered 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.

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.