Carers of people with dementia

We did some things together which were helpful, you develop strategies to try and offset when they're upset or confused and I found that somebody recommended to me early on making a life book with her pictures, so I got a photo album and we sorted  out the photos. And of course her long-term memory is pretty good so she knows what pictures are where and you can sort of develop a chronological photo album and write underneath. And referring back to that is often a good way of calming, I found it a good way of calming mum down, she enjoyed looking through the photos and telling me about them.

Perhaps if we bumped into people I would sort of, yes or it's like when you first introduce people he'd say something like 'Oh hello [name]' and then perhaps say to her or say to them together' 'Oh you did all those rambles together didn't you,' and my husband would say 'Yes' but he obviously didn't remember, so yes I mean things like that I would try and draw something which connected them together. But nothing as sort of formal as sort of, I don't know, it was done on a very sort of casual basis. I'm trying to think.

Possibly I've said things, I mean when my husband's, people have been a bit baffled by the response they're getting I might have said to them afterwards 'You do realise my husband's got a memory problem?' He said, 'I'm beginning to,' this sort of thing. Yes I try to find some common ground, if I'm having a conversation with somebody, perhaps if my husband's obviously forgotten I'll bring him in as well. I'm just trying to think of a particular one.

I bumped into someone, we were just walking across [place], not that long ago and I bumped into somebody we'd met on theatre trips. And I sort of said to my husband 'Oh we haven't seen [name] since we went to [town] have we?' and he said 'Oh no.' but he knew anyway what the situation was and he was very good, including my husband.

I mean people do, when they're aware, I think they, other people will go out of their way to try and find common ground or just sort of tune in to what's going on. What I do not like standing with one or two other people and my husband and excluding him. I mean that's just, that just isn't on. If he's there he's there and he's included. But I don't know if I've ever made a conscious effort. It's just the way things are really.

And the other thing I think we’ve tried, still trying to get used to is not to ask questions.

Why is that?

Because it, because it creates massive anxiety. Not understanding a question creates anxiety. So, we started we started noticing that everything, anything you would say like a choice, “would you like a cake? Which cake would you like?” The answer was always “No. I don’t want a cake. I don’t want a cup of tea. No.” But I don’t think and then we decided it wasn’t anything to do with whether she wanted a cup of tea. It was to do with, she couldn’t process the question. So, we try really hard not to ask questions. So, it’s like, “I’m having a cup of tea. Let’s have a cup of tea,” not, “do you want a cup of tea?” So, and that seems to reduce, you know, reduce any of the anxieties and it also gets her to drink, you know, the drinking and eating is becoming a problem. You know, you can’t force somebody to eat. So, if their response always is, “no I don’t want something to eat” then the tendency is for them not to eat.

I'll give you an example. My father came from a family of five and one of his sister's had died at a fairly ripe old age and we were sitting actually where I'm sitting now one Sunday afternoon talking and I mentioned in passing the death of his sister and he got very agitated about this because no one had told him. 

Now I knew he'd been told because I had told him, but I had learnt partly as a result of the processes that he'd been through, the thing you don't do is confront. You don't say to somebody 'Of course you know, I told you.' The rational mind in the patient is saying to him 'I would not have forgotten if I had been told my sister had died.'

And you can very easily put yourself into a conflict situation in which you are to him - or her - appearing to be completely irrational, aggressive and unreasonable for no cause because you are telling him that something's happened that he knows very well hasn't happened because it's not the sort of thing he would forget.

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.

Yes, sometimes it's so easy to misconstrue a person's behaviour. Again this occurred during the respite period in the hospital, and I had a phone call to say 'Would I please go to a ward meeting the next day.' To which there was the consultant, some junior doctors, the ward manager, my CPN, there was quite a gathering of people, and the bone of contention was that in their view my husband was 'touching up' the young female staff.

I said 'Well you know, could you tell me more?' And they said 'Well he, when they're getting him ready, washing and dressing him, he touches their faces or he touches their shirt.'  Well I think at this point I had to pick myself of the ceiling and say 'Well, look, my husband has no coherent speech, if he wants to say “Thank you for cleaning me up” or “That's a pretty colour you're wearing today”, how else can he do it except by touching?' And I felt really insulted on behalf of my husband if he was somehow being labelled a dirty old man, when in fact his problem was that he couldn't make himself understood except by touching, which was promptly misunderstood.

And I do think that the best way of communicating with people in the middle to late phases of dementia is through touch, through holding their hand, through smiling, to convey information in ways other than words which they understand and to which they can respond, if they wish to. Obviously some people don't want to be touched, I understand that, but I think the care staff at least should give the person with dementia the benefit of the doubt if they want to be touched. And if they want to touch them then that is a human act of kindness and has no sexual or other meaning to it. Mostly!

And another thing is the joy, one of the conveniences of Alzheimer's is if you say 'Would you like a drink?' and she'll say 'No I don't want to take it,' and you'll put it down. You can actually say it as if you're saying it afresh a couple of minutes later. Sadly the carers at the home where mum, don't all realise that, they'll go on reasoning. 'You must take this because it's going to make you better,' and she's lost it, she's lost her powers of reason now so it's better to just put it down again and say, talk about something else or sit there for a bit longer. 

And 'Oh would you like a drink?' 'Oh thank you.' And she might take a sip and say 'Oh I don't like that very much.' 'Oh well put it down and have it later you know.' And if you've got the time, but I appreciate the carers haven't got the time, they've got seventeen others to look after. I'm there for up to three hours and I've got the time to sit there and do something useful. But yes it is a problem.

I didn't want him to be a zombie but at the same time I wanted to try and manage it. So in the end I took him off the lot and we thought we'd see how he went. Well, he never sat down - basically. He just went round and round and round and round. He'd come home, he wouldn't even sit down for his meals at the care centre, at the day centre. I made him sit down because I've got a lap tray so I put his, I do now put his meal on his lap and virtually pin him down.

But the rest of the evening it was just round and round and up the stairs and out the house and round this little circuit until it was driving me mad. And then I thought well calm down, what's the worse thing about it. The worse thing about it is it's irritating. Take that away and just let him go. Now we've had to change psychiatrist and CPN because now he's under county for his care plan, protocol said that we can't access the psychiatrist or the CPN. 

So I've got a new psychiatrist and a new CPN. The psychiatrist when I went to see him said to me 'Well now look at it like this' he said 'perhaps [name] would like to be able to sit down and rest, but can't because this is obsessional and he actually can't make himself sit down. But he's, it's wearing him out. So look at it like that and maybe it might be a good idea to medicate him.' So that's and I thought about that afterwards and I thought yes, you're probably right, you know he just cannot sit down. Now if he's absolutely worn out and he's still got this compulsion to walk it must be terrible for him.

So I started to alter my thinking on it and the other things I'd thought when I'd read these articles from the Alzheimer's magazine I thought I wonder if the people who write some of these things have actually had experience of living with somebody with some of these problems that dementia brings and know just how stressful it can be having somebody doing something time after time after time after time until you're nearly screaming at them to stop. And it's not doing you any good and it's not doing them any good, so maybe the medication needs to be a halfway house.