Interview – Carers of people with dementia

He felt he had to fight to get the care she needed when she needed it. Indignant that medication was refused on grounds of cost but did persuade GP to give Aricept, though he admits it didn’t do her any good. Life is very lonely since she died.

Carers who came to look after his wife did very little for her.

Gender Male

On the whole I found the carers and caring service, because they were, they were got by the DSS but they were private firms so all they’re looking to do is make a profit and it showed. It showed in the fact that some of the girls that came just didn’t, they didn’t care so. And really that would put me on thorns because when they came again I wasn’t in a position really to say too much at that time so I just let it go but it bugged me quite often.

The DSS lady did eventually ask me what they did when they come here and I said ‘Well they look after [name]’ and she said things like ‘Well do they do any ironing or cleaning or whatever?’ I said ‘Well not that I know of. She said ‘Well they should do certain jobs. I said ‘Well I wasn’t too bothered whether they did these jobs or not but she was concerned that they should be doing certain things. I mean all I was concerned about was what they did for [name], not whether they did the ironing or stuff like that. But apparently they do have set routines, which proved to me that some of them were just sitting and not caring which wasn’t very pleasant. Out of all of them there were only two who ever took her out. All the rest didn’t take her out at all, even for a walk round. So as far as that side of things were concerned I weren’t really happy at all.

Print Transcript

Was concerned about his wifes feelings when he had to deal with intimate aspects of her toilet.

Gender Male

At first it was a strange thing because although wed been married forty-eight years, and I’d looked after her mam and dad it, was, I was more embarrassed, not, no not embarrassed, I was more worried about her feelings, than anything else. And, I had, read and, also been told about this problem with, they, might think you were being sexually orientated rather than caring for them.

In fact that did crop up once or twice when I was getting her ready for bed, shed say things ‘You’re not, you’re not taking me to bed you know. I’m not having none of that. When in actual fact nothing was further from my mind of course. But then I’d just let her get into bed as she was. But later on I did have to wash her private parts obviously, and I did have to help her to go toilets by removing her clothing and things like that.

And strangely enough, she wasn’t worried in the slightest and neither was I, I wasn’t embarrassed at all. I don’t even know why I was embarrassed in the first place, except for being worried for her, not for myself, you know. And it just became a normality, in the end, I just did it when it was, shed say ‘Oh I want to go toilet. Or, I could see that she wanted to go to toilet because what she used to do was wander up and down and I’d, say uh, ‘Have you lost the toilet then?’ Shed say ‘Yes, where is it?’ and I would take her to the toilet, so yeah, we, soon, got over that I think really.

I found the incontinence thing a really big problem because I didn’t know where to go. I didn’t know what to do, at first. It really wore me down that did until I found out, ’cause I mean I was quite prepared to clean things up and that but I didn’t know how and what direction it would go and what to do about it. I didn’t, I mean when I tried to put an incontinence pad on, I done it the wrong way round and instead of it being a sort of reasonable experience it became a fight, the first time I did it, which was upsetting for me and was upsetting for [my wife]. Whereas had I been warned and perhaps even taught what to do then, you know.

Once, I think once they say ‘Your wifes got Alzheimer’s’ and then go through sort of what might happen and things like that and then when it come to incontinence say ‘And if they get incontinent, you can do this’, and you can go to perhaps a carers’ meeting and it can be explained to you how to utilize these objects. Rather than as I was ‘Heres a bag, it’s got incontinence pads and knickers and things in’ and then you’re gonna, I mean especially for a man, I mean a woman might be better at it, and say ‘There they are, do it.

Rather, say’ ‘There they are, this is how you do it. I know it might sound as it it’s a simple thing to do but it isn’t. When you’ve got somebody who’s incontinent and you’re trying to change them, and clean them and things like that, it isn’t a simple operation. It’s just one that wore me down a bit until I got into it. But it wasn’t a problem of me not wanting to do it or anything like that; it was that I was doing it the wrong way! So yeah, there are things like that.

I suppose on all the caring, there could be, I think really what it needs is, when you know somebody has got Alzheimer’s is, there must be people who know by now all the things that are likely to happen and some of these could be taught quite early on to the person who’s gonna look after the person with Alzheimer’s, that’s how I feel about it. I think that would be a good idea because you go into it blind and it is
What I found was that each problem that came up, it wasn’t until the problem was there that somebody would explain it.

Embed Print Transcript

Regrets he couldn’t make his wifes life better as her dementia became more profound.

Gender Male

I wished I could have done more for her, yeah, I wished I could have, I don’t know how, but to make her life happier and better than just like being, more or less a cabbage, say towards the end. I would have liked to have kept her cleaner than I did. I would have liked to have took her to the places she loved but she wouldn’t have understood. She used to love going to garden centres. And I did take her when, when she wanted to go and we got to the stage actually where, me and the carer used to take her and um, shed no sooner get there and, ‘I want to go home. So wed come straight back.

It would have been nice if she did still like the gardening, like the theatre and things like that but obviously its not to be is it, you know, so, yeah, I would have liked to have done a lot more for her personally, than I could have done. I did what I could but I would have liked to have done more.

Embed Print Transcript

Would accept the right to euthanasia for people able to request it, but not for someone with dementia.

Gender Male

I do agree with euthanasia for certain things. The certain things being where somebody has got cancer throughout their body and they are going to die, which is what I was saying to you about (our friend). Her husband had prostate cancer and he was terminal and he was in pain all the time, even with heroine or whatever it is and other drugs.

If people ask for euthanasia I think they should be entitled to it. Somebody with Alzheimer’s wouldn’t even know what euthanasia is, so, unless they had something else like cancer that was keeping them in permanent agony, no, for, for dementia, for Alzheimer’s I would never agree to euthanasia – ever. But for the other things I would, even for myself.

Embed Print Transcript

Knew something was wrong but didn’t know what.

Gender Male

Well as I said previously at first I thought we were having problems and it wasn’t until the doctor gave us a scan that we realised something was wrong but prior to that life was pretty bad really because we had no idea what the problem was. You just felt as if things were going apart and you couldn’t do anything about it and strange things were happening. Like, as I say, money being drawn from the bank, over spending, not looking after things as well as they were being looked after, but still not realising that there was a problem at all as regards health.

Embed Print Transcript

Has changed his views about tests since looking after his wife. Is now planning a test for prostate cancer to reassure himself and his new partner.

Gender Male

I wouldn’t mind it, yeah. Yeah I wouldn’t mind it because I, I have changed my views, I must admit previous, previously to, looking after [name] I would have said I Don’t want to know anything. But I think I’ve only changed my views now because I’ve met somebody else who as I said before, her husband died of prostate cancer, so I’ve, I felt prepared to go and have that test just for their peace of mind. I mean it would give me peace of mind obviously, but I was thinking more in that direction. So yeah I, I think I would now, if somebody said, Well you know theres a test going for so and so, I would probably go for it.

Would you want your children to be tested?

Are we talking about grandchildren or tiny children? Well even if Id like my family tested, theyre at an age where they make their own decisions but, usually you know theyre, I would say Yes, but then they would have to make their own decision. If it was a, a small child then Id have it done, now. Because theres so many things that can be done in the early stages, so instead of you being seriously ill or dying you can be made better. So yeah I think it’s a good idea now to have these different tests, and that’s why I’m having the one as I’ve already said.

Embed Print Transcript

Advises others to get information as soon as possible after the diagnosis.

Gender Male

So I did get on the computer, on the Internet and it was only then that I found out some of the devastating effects it does have on people and their lives. But certainly had I not had the Internet I don’t know where I would have found the information out really, as much as I did. Because I did find out, like for instance I found out about the Alzheimer’s Society which I’ve now joined but I didn’t even know such a simple thing as that.

I just didn’t know anything at all. But I soon learnt, I soon learnt from other people. I mean some people that I spoke to had been looking after people for ten, twenty years, I mean that seemed unbelievable and then I found out that you don’t die from Alzheimer’s. I just got more and more information like that which really I suppose is only basic but it did help in the fact that I knew some of the things that might come along and some of them certainly did come along.

Well try and quickly get as much information as you can. Certainly try and find out all your rights and the person who’s got Alzheimer’s, their rights, pretty quickly. And I think the people who are supposed to know all these things really should know them better. I found looking after [name] not too much of a problem, tiring at times. The biggest problems I had was with outsiders, trying to find out things, trying to get things done. As I say we like, we all need us feet doing but to wait four to eight weeks to get somebody’s feet done is absolutely ridiculous.

Embed Print Transcript

Problems persuading his wife to take the medication which she needed for her chronic obstructive airways disease.

Gender Male

But as to giving it direct, at first I used to give it to her, in her hand and shed take it. But then Id, later on Id give it to her in her hand and shed put it down, and Id put it back in her hand and she might take it.

Then later on Id put it in her hand and shed put it down and she wouldn’t take, it so Id give it to her in her mouth, with a drink and shed take it. And then later on still, Id give it her and shed put it in her mouth and then wed find it hidden somewhere else. Or shed spit it out or whatever. So in the end we started putting it, grating it down, into powder and either putting it in her tea, in her food or whatever, so that, shed have it, but then shed, sometimes wouldn’t eat or wouldn’t drink. So then, we just couldnt give it her.

And I, Id tell the doctor and theyd say Well, a day or two wouldn’t matter. Which I suppose really it wouldn’t but sometimes it, that was a big problem I think, giving the medicine because it, sometimes we just couldnt give it her and we knew she needed it. Especially with the other things she had like Chronic Airways Disease and that if she had she needed antibiotics and we couldnt give them to her, and of course Id talk to the doctors but, if you cant give em to a person, its not like a dog, you cant, you just have to not give it.

Unfortunately I couldnt, at times I couldnt find a way round that other than not giving it to her, because if she wasnt drinking and eating, because she did have, at times those problems where she just didnt want anything to eat or drink. So the first opportunity when she would have a drink or something to eat, in went the medicine and that’s how we carried on. But that was a lot, a lot later on. Mainly we did get the medicine down her, but you know later, later on it did become a real problem, that. But we done the best we could.

Embed Print Transcript

Describes why he felt he was the best person to care for the wife hed loved all his life.

Gender Male

I mean some people when they find out that a family member has dementia say ‘I’m not gonna do it,’ just full stop. Obviously you didn’t, you made the other decision. Why was it not an option?

Well because at the very beginning shed been into a centre anyway, to be assessed and when I saw how that was run and how she was in there, I made my decision then that I would look after her. Which, I was looking after her anyway, but in the sense of her having dimension, dementia, then I would look after her. And, and if she were gonna be looked after anywhere it was gonna be here where she could have whatever she needed and somebody to, look after her interests, because theres so many people whose interests are not looked after.

I don’t think I, even thought of anybody else looking after her to be quite honest. I mean I, met her when we were 14 and wed been together all our lives more or less, so I wasn’t going to part with her to somebody else! No, no way.

I don’t know whether that answers your question or not, but that’s how I felt. I was, quite proud to be looking after her. She looked after me at different times in my life when I needed to be looked after, so it was only natural that I would look after her.

As to the other little bit you said about people saying they wouldn’t, care if their partner had Alzheimer’s, they can’t love ’em very much if they’re not prepared to take some care, from the very start. Because you don’t know what’s in front of you when you get somebody with dementia so how can you say ‘I’m not gonna look after ’em,’? Other than you don’t care about ’em.

Print Transcript

Insisted that his wife was given a prescription for Aricept.

Gender Male

For instance the only way I knew about Aracept was talking to a lady in America, a nurse in America who did this, looked after people with Alzheimer’s and that, ‘Have you tried Aracept?’ But nobody had told me here about Aracept and when I did mention it the main thing that come across was ‘It would be very expensive and it would cost you about £70 a month. But nobody had told me about it, you know, I mean they knew about it so why didn’t they say something about it.

Embed Print Transcript