Johnny
Johnny’s spouse was diagnosed with mixed dementia, Alzheimer’s disease and vascular dementia. He coordinates day care activities for his spouse to attend and they also frequently attend dementia related support groups. Johnny manages his spouse’s day-to-day care. At the time of interview, Johnny did not have care workers to support his spouse’s care.
Johnny, aged 85, is retired and caring for his spouse. He is the primary carer for his spouse, providing day-to-day care and coordinating day care and dementia related support group activities for her. Johnny was a social care professional before retiring. Johnny is White British.
More about me...
Johnny has a close relationship with his spouse. His spouse was suspected of having memory problems as early as 2013, but was not formally diagnosed until 2019. While Johnny’s spouse is physically fit, he has trouble with his own mobility. He had care workers to support his spouse’s care initially. At the time of interview, Johnny’s spouse was attending activities outside of the house, a mixture of days at the day centre and dementia support group activities. Johnny and his spouse would attend the local dementia support group’s activities during the week and on the weekends.
Johnny felt there was difficulty finding practical adjustments for his house that would meet his spouse’s care needs. He was able to pick up information from various sources here and there over the years – from other carers and from care workers through a casual chat. He felt there could be more practical advice about adjustments and modifications that could be made to better support his spouse’s care.
Johnny describes his mobility and ability to move around.
Johnny describes his mobility and ability to move around.
Again going back some time ago and I came in and I could smell bleach, and somehow she’d got the bleach and she’d put bleach on her face, because she puts creams on her face sometimes, and I came in and I could… realised she… she’d got bleach that was all over her face, and I quickly washed her hands and face, so when… when [name] is here, I’ve got to keep my eyes on her.
And of course my mobility’s not been… so if I see… and [name] goes in the kitchen, I’ve got to get up, so if we was getting up here, now I… I’ve got to do… that… that’s getting up, you know, so, I’m not as bad as that once I move… if you move backwards and forwards and I’m not as bad as that, but that… that’s… you know, I’m not… not kidding when that’s getting up and down.
Johnny recalls how he sought an answer about his wife’s out of character behaviour.
Johnny recalls how he sought an answer about his wife’s out of character behaviour.
And as I say, 10 years ago I went to the GP and I think the first time I went, it was a lady doctor, and I can’t remember her name, and we sat down and she said, “What… what’s the problem?” and I said, “Well,” I said, “there’s a number of problems,” and I remember saying, “[name] will spend hours and hours cleaning,” I said, “and when she goes to the shops she’s shopping and…” and the doc… this lady doctor said… I’m pretty sure, “I’m not sure who’s got the problem here,” and I was… and I didn’t show my anger, but I was absolutely furious, and I thought, ‘I’m telling you…’ maybe I didn’t tell her the right way, but… but she said, “I’m not sure who’s got the problem here.” So that was the beginning I think when my medical contact, and I probably left it for maybe a year, and then went back again, and the local doctor said, “Hi, [name],” he said, “I’m just going to tell you three things and see if you remember them: apple, red, New York,” he said, “and I’ll ask you what those are in a few minutes,” and he spoke for just a few seconds, and he asked her, and of course she didn’t know.
Mind you I must confess – I’d forgotten one of them. And… and I think… I think he… he then referred us to the memory clinic. And this went on for years, going to the memory clinic, and we saw these specialists… dementia specialists I assume, and I think the first rec… I was looking at some papers last night, is 2013, or ’14, ’13, ’14, we saw this specialist doctor, and he did a similar thing, he asked her questions about the prime minister and all those sort of things, and she didn’t… and she couldn’t answer any of them, and he said, “She hasn’t got dementia, it’s…” oh, he said, “We’ll… need to send her for a scan,” so she had her scan and then he said, “it isn’t dementia, it’s age and memory loss.” And her behaviour now has started to get a bit bizarre. I can’t remember specifics, but now she’s doing things that she hasn’t done before. So, it wasn’t just memory, it was behaviour that changed.
And that went on for quite a few years. I’d see this person, he’d ask her questions, and get the same poor response, send for an X-ray and then… or it is a scan, isn’t it, a brain scan, and, “No, the brain hasn’t shrunk,” and then eventually he said, “the brain has… it’s shrunk a little bit – she has dementia,” and that was in 2019. But the only thing that had changed was the results of the scan, and behaviour was pretty much the same, bizarre behaviour.
Johnny explains about his partner’s whiskey drinking.
Johnny explains about his partner’s whiskey drinking.
And I remember the doctor saying, she’s… “You’ve got to do something about this drinking,”
And all these bottles of whiskey, and opening draws and there’s half bottles of whiskey everywhere.
And gradually we… we got the half bottle of whiskey down to… I was putting water in it and doing that, and that went for years, and years, and years, this boozing problem, and it’s only in the last few years, the last two years, that she doesn’t ask for… for drink now. I got from whiskey down to wine, from wine to watered wine, I’d get a bottle and put, you know, a cup of water in it, and I had it down to a half a bottle, down to… in fact I bet there’s some bottles round there now that have still got half a bottle of wine with water in it, so we overcome the drinking.
Johnny discusses therapeutic fibbing.
Johnny discusses therapeutic fibbing.
The expression and I don’t know if you’ve come across it is therapeutic fibbing, so if she says something like, “Where’s Dad?” I’ll say something like… well, with Dad, her dad died a long, long time ago, and I’d probably just say, “Well, your dad died a long time back,” but she’ll say is, “I want to see Dad,” I would say, “Well, let’s have some coffee first,” and… and talk away from it, because if she thinks Dad’s alive, I am not going to her he’s not alive, but she asks me, I’ll go along that route.
And even only a couple of weeks ago we had the disaster in the family where a 36 year old member of the family died and I didn’t take her to the funeral, even though I’d told her she was… the member was poorly, and I’d told her when she’d died, and she said, “That’s terrible, that’s terrible,” but when we went to see the family, she said, “What’s wrong?” and I thought… and so I… I sort of… I’m now protecting her from some of the things that I don’t think she’s… that do her any good, or she gets any benefit from.
So… but things like the therapeutic fibbing’s a great help when people tell you it’s a way of handling the issues.