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Colin’s story: living with DLB

How does dementia and particularly dementia with Lewy bodies affect people’s lives and their relationships?
He went from working to being, you know, a businessman out seeing his clients, to nothing. It wasn’t like when somebody retires, they have a gradual I’m going to retire in three years, and that’s my plan. One minute he’s working, and the next minute that’s it’s, it’s all over. And he feels that he’s trapped, so therefore it’s watching them go for 50 years of a happy marriage to the last four years, not. And I suppose that’s been not very nice, not very pleasant to see. Other challenges are having to help him do everything, which he doesn’t want. Very independent man, always has been.
Suddenly he has to have somebody help him walk to the car, open a door, open a can of Coke, whatever it is. There’s nothing he can do completely by himself without having a little bit of help, and it’s not nice to see him go through that, really. Not nice for Gill to have to spend the last bits of her marriage as a carer. They stopped me driving the car immediately. Soon as they found out what I have, they said, you can’t drive anymore. And that’s everything I have left. Anything I want to do, even walking from there to there, I have to have help. Anything that you can think of. He can’t dress himself, I have to help him dress.
Yeah, dress. and when you go to the toilet, as well. I mean, sometimes he can’t remember. Because we’ve got this– rail, I’ve got a rail that helps. –and sometimes he says, I don’t know what I’m doing. So I have to turn him around. It’s just– the challenges are getting harder. Most people that I play bridge with know that I have a problem, and they will bend over backwards to help me. I mean he, Colin obviously does make mistakes, but generally, he still plays pretty good bridge. As he said, people are very kind that we play with. Very understanding. We don’t go out in the evenings. I find Colin doesn’t understand, so much, now things on television.
He gets– anything that’s, sort of, too complicated, I try to avoid. He likes listening to music and things like that. So we– also because of the physical side of things, we don’t go to the theatre. That’s quite a problem, getting him in and out of the theatre. We were going to the cinema. We still do occasionally go to the cinema.
But friends, most friends are very kind, very helpful. But at the end of the day, you’re really on your own. I mean, I’ve got a fabulous family. My family are just wonderful. We’ve just moved to a warden-controlled flat.
The stairs were a problem for Colin in the house. And– It’s a ground floor flat. Yeah. And that seems to have worked. We’ve only been there three months, but that was a good move. It was a good move. It was hard, because Colin found it hard, at first, to get used to do somewhere different. Because that’s the one of the challenges, anything that’s unfamiliar is a challenge. Living with somebody with dementia is difficult. Often, the person doesn’t have insight into the fact that they are unwell, so when the relative tries to help them, they’re not only ungrateful, they might be frankly hostile.
And that’s very difficult, most of us probably think that we’re going to grow up and be parents, but probably not many people aspire to be a family carer of your parents or your spouse, your husband. It’s not what we plan to do, and that’s made much worse by the fact that if somebody’s hostile and doesn’t think there’s anything wrong. I talked about the fluctuations of DLB, and I think that it’s very difficult for families in two ways. First of all, it’s difficult because they don’t quite know what’s going to happen. They could be engaged in really quite coherent conversation, then the person seems to be absent. It’s difficult to plan when somebody changes dramatically from moment to moment.
The other, they also have found the physical limitations associated with DLB, as well. The Parkinsonian-like symptoms, which may be hardly noticeable or can be quite bad. But I think the other thing is that sometimes relatives interpret the fluctuations as purposeful. They think if somebody can do this one minute and can engage one minute and isn’t engaging in the next minute, they’re ignoring me. And if they do that, it makes them feel angry and makes them unappreciated or even hated, and that’s almost impossible for somebody to manage to live with without becoming depressed or not wanting to look after the person anymore. So this can be a very challenging illness. He becomes another person. He becomes somebody that I don’t know.
And he gets quite angry, which is probably his frustrations coming through. And then he gets angry at me and I get angry at him, and then I feel guilty that I’m getting angry at him. It’s a terribly destructive condition. It really is, because it really does destroy your relationship. Because he can’t help it, and I feel guilty if I’m getting annoyed. But then, you know, I don’t know what the answer is. It’s so hard to watch somebody you’ve lived with for 50 years disintegrate. It’s put a terrible strain on our relationship. Really has.

Watch Colin’s family describe the journey that Colin has been through since being diagnosed with DLB, and the impact it has had on them all. They cover the activities that Colin still participates in, the ways in which their lives have changed and the support they receive from their extended family.

We also hear Prof Gill Livingston’s perspective on the challenges of living with DLB.

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The Many Faces of Dementia

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