Age at Interview:
Age at Diagnosis:
Carer is married with her own family (2 children). She shared decision making with her brother and sister for her widowed mother who was diagnosed in 1998 / 1999.
Brief outline:Her mother had been an independent widowed woman. They had hoped when they were able to move her nearby that this arrangement would be adequate for several years but before long she had to go into residential care.
It had become evident by 1997 that she was in some difficulty living on her own. She was falling out with people that she'd been friendly with a long time. She was blaming people for things that I think she'd done herself or that hadn't been done that she thought she'd done and then, I mean for example putting her name down for an outing.
She would say she didn't want to go so her name wouldn't be put on the list and then she would turn up for the bus with everybody else and be very upset that she wasn't allowed to get on it because she hadn't put her name down and there was no room. And she would say that she had put her name down and that somebody had crossed it off.
Do you think a person with dementia should be told the diagnosis?
If they wish to be. And, but it's not always clear that somebody does or does not wish to be. In my case, if it was me and if it was now, yes, I would want to be told because although I would be scared witless actually, at the whole idea that I was going down that particular slide, I feel that there is some provision that I could start to make and could prepare members of the family for what was going to happen.
In my mother's case I tried to ascertain whether she wanted to know. My view was that she possibly didn't but her, her previous, my previous experience of dealing with her was that she dealt better when she knew what was going on than when she didn't. She didn't like thinking things were going wrong and not knowing what it was, whether that was a social thing or medical thing. If she felt unwell she liked to have a name put on it and then she could deal with it and take the medicine, or know that there was no medicine.
But by the time we got a diagnosis I was also aware that she was quite frightened by what was happening to her. She would sometimes be quite up front and say 'I don't know what's happening to me.' ' I can't seem to remember anything.' 'I'm really getting worried.' 'I don't know what's happening to me.' And she couldn't elaborate upon it, she wouldn't or couldn't tell me what it was.
The memory problems she was having were all short-term memory problems and problems of, I think some sort of spatial problems as well. The flat is about a half, a mile in more or less a straight line from here and from her window you could see across a playing field, the top end of our road. But of course between that road, the main road and the, besides the playing field and the main road, between that and us there were then a lot of houses because we are at the bottom of the road.
And she could not understand why she couldn't see the house and she would stand at her living room window with me and say 'Well whereabouts is your road?' and I would point it out and eventually she learned where that was and she'd say 'Oh its just there by that white house.
Well why can't I see your house then?' And no amount of conversation about it or drawing or illustration or any, any kind of example, or walking up the road, would convince her as to why she couldn't see my house from hers although she understood why she couldn't see her house from mine, presumably because the buildings are here and closer, and nearer.
Yes I'd be very, yeah, I think if that was put to me 'We can give your mother something but of course she'll then realise more,' I think I would have been discouraging about it. But I would also have been aware that I couldn't, I didn't have any right to stop it.
I mean it's got to be a, I think you have to defer to the medical profession in these things but at the same time you have to be aware that the medical profession may not be totally altruistic in their motives and they want to look at the results of these experiments. Are they looking for guinea pigs? I don't know. But I can't, I don't think I like the sound of that one.
So, but I was aware that my husband had rights and issues within this and, I had discussed it formally and informally, mostly informally with people, on the basis that I couldn't move my mother in here. a) the house, most importantly, the house is unsuitable; but there is another option, you can move you know. We did talk our way through that and it wasn't something my husband wanted to do, it was nothing personal to my mother but he didn't want to move, and I didn't want to move, and besides which she didn't want to move in with us.
And she had said that all her life and continued to say it until quite late on in her illness. At which point she did start to say 'Well why can't I live with you?' By that time she was in the nursing home.
But up until then she'd always said, 'I don't want to live with any of you.' Now, I think if you're committed to a partner, I was going to say married, because that's really what I believe, but I think nowadays people make, or think they have made a similar commitment and therefore the same applies. If you're committed to a partner then that commitment is the prior commitment.
In the same way as if you have a child the commitment to the child takes precedence over the commitment to the other adult in the partnership because the other adult can take care of himself for a bit. But you have to try and balance it all the time. Once the child's needs lessen a little, then you have to try and balance the relationships otherwise you've got, you know it's got to be balanced. This is different, it's a parent who cared for you and now suddenly the roles are reversed.
It is not a parent who has a blood link if you like, or a long familial link to the other partner in the arrangements. My husband knew my mother for years and got on with her extremely well but the fact is she was my mother not his mother. And whilst he was sympathetic and wanted to do everything we could for her he was also, I think by the end of it he, was beginning to get a little fraught over it.
I don't know what it must be like as a husband or wife caring for their partner but to care for your parent who does not live with you, you have the decision as to whether they should live with you. That is influenced by your own circumstances and their own, their own wishes and the wishes of anybody else who happens to be living with you.
Personally I think when one is married, the first priority is the partner to whom you're married - or committed to I suppose in this day and age - and the parent has of necessity to be the second priority, it has to be like that. Otherwise you rescue one relationship, well one person at the expense of another; that's all very easy to say but it's the doing it, its very difficult. I had great difficulty remembering that my first priority must be my husband when my husband was hale.
It was decided that the house that we live in is not suitable to have my mother living here in her - then - condition. Although there is a downstairs toilet facility, there are lots of little steps in awkward places. It, she would have ended up either a prisoner in her own room or sitting with us the whole time, neither of which would have been a good idea. As fond as my husband is of my mother, it would be putting a great strain on him, and we have a relationship of our own which is important to us - after many years of marriage its as important as it was in the beginning, it requires nurturing, not threatening it, really.
The first one that was tried, I had tried the previous year, I had asked my doctor if there was anywhere she could go to for one day a week or so and he had tried one. I don't quite know, I can't remember how he accessed that, but anyway, whatever, she didn't like it 'It was full of old people.' She didn't like it, the fact that she was going on for 80 was neither here nor there, she was 80 in fact: 'I'm not going there.'
But following the diagnosis she was able to go to a day centre attached to the psychiatric unit of the hospital which was run by this consultant's boss, if you like and he, she went initially one day a week, well in fact almost immediately two days a week because one day a week was too long apart for her to be able to remember what was going on, but two days a week she seemed to be able to cope with. Every week was a fresh week and a fresh experience but the two together with just one day in between, she got into a routine and she went relatively happily for some time, and then three days a week.
Partly that was I think supposed to help me, and it did because I knew where she was from 9 o'clock but the problems were that she had to be picked up and brought back. Bringing her back wasn't too much of a difficulty because they would bring her back in the hospital minibus and somebody would escort her into her flat and once she was there she knew where she was. And we'd set it up as far as possible like her previous flat so all her familiar things were there, just like a slightly different layout by the nature of things, but she would, she would recognise her own pictures and things.
But going was a different matter, she would get the day wrong, she would go downstairs and try and get on board other people's buses and transport which were nothing to do with her. She would refuse to go, they would come for her and 'I'm not going' because she'd been out an hour earlier and tried to go and not been able to go on some other bus or transport she would, a fit of high dudgeon and 'I'm not going' and that was that. But they began, they learned, they knew how to deal with it for the most part, I think the drivers are volunteers but they, they obviously get the hang of it and by and large she attended most of them.
In the case of dealing with a parent, there's a role reversal and the, even though you may have been moved out of the family home for years and years, and you've been living your own life and making your own decisions, in the relationship between the parent and the child however, whatever their ages, there is always some residual authority invested in the parent. Well that changes, the parent becomes dependent on the child by, of necessity, and the child finds they're making the decisions for the parent: where to live, how to live, whether they have carers in, whether to move house, which GP, what to eat, everything, what to wear on a particular day.
And as I say those decisions can be huge decisions like whether to sell a property in order to fund care or just whether the person needs to wear a bra anymore. We recently decided that my mother didn't need to be cluttered up with such an object and asked the staff not to bother putting it on her. She's not aware that she's not wearing one so there's no point in it really. We have sold her house, we did decide that she would need to go into a nursing home, but you can make as many decisions as you like but you have to have the co-operation of the patient and that's where it really gets difficult.
I think myself that its not, its never going to be a simple issue making decisions for other people. Its not really, although it's a reversal of roles, its not really like a parent deciding this school is better for their child than that school or that they will go to a scout evening but they won't go to a disco. It isn't, because you're dealing with an adult and you have to try and decide things what will be acceptable to that adult. At the same time you're restricted in what you can actually have, you're restricted by what's available, you're restricted by financial considerations perhaps.
He said to my sister 'I think your mother is perfectly able to do this.' In fact he said that with her present, she was quite happy, she wasn't offended by it and he'd explained to her that he had to ascertain that she was able to do this. 'Well why wouldn't I be?' she said. And he said 'Well you know there are all sorts of reasons that might be so but we don't need to go into those, I just need to be satisfied you are able to do it and you agree to it, you're not being pushed into it by your family or anybody else.' 'Oh no,' she said 'I think it's a very good idea.'
The only thing that changed in the course of that interview with the solicitor was that whereas she was going to give it to one person he suggested that she gave it jointly and severally to two people, namely my sister and myself because then we could operate with her but without each other if it, if necessary and it wasn't, if one of us was away abroad or, there was still somebody else. And it was deferred or as it was called Enduring Power of Attorney.
You don't have any real power to, to make the person do what they don't want to do. You don't have any right over the person at all but you can sign cheques for them to pay bills that they've agreed to pay. It's a big ethical issue involved in this, yes. [OK yeah.]
How did you feel about the Power of Attorney and the responsibilities that come with this?
We were led very clearly by her solicitor, my mother's solicitor who was, very clear and very good at telling us what our roles and responsibilities were and we took the view that he was acting in her best interests anyway, because he was her solicitor and should have been, but he was. And we had confidence in him and she had confidence in him and he told us what we could and could not do with this power. And in practice we did very little with it at all until she came to move and then it meant that I could deal with things at this end and my sister could deal with things at that end and both of us could sign the legal papers and my mother really didn't have to sign anything at all. Although some things she did sign, I mean where she could, she did.
I knew that she would feel as I did about losing control of her life and her environment and her decisions because she's my mother and we, I grew up with her and you know it's part of life's experience for me.
And I knew how frightened she had been of exactly this thing happening to her and it had happened and there was nothing that I could do about it, absolutely nothing. So the whole thing was a horror really. The only way to deal with it was to try and be honest with her when I could be, and I couldn't always be, and I had to rationalise that and know that there were times when it was better not to be honest for the sake of her well being, reassuring her rather than worrying her, which is not a comfortable situation to be in, no.
I think there ought to be, I think that people in my mother's position ought to have a CPN involvement, if it is only every quarter or even every six months where there is an input from the CPN. The CPN will visit and talk to that person and hopefully there's no need for some time, by the time they're in a nursing home, or would have notes to fall back on and would be able to do some sort of assessment and gauge how things were going.
Why do I want that? Partly, as I said because it would be a, she would be being interpreted to me by an informed - a medically informed or mental health informed person - which might make sense to me of some of some of the things that don't make sense. And this was really all more relevant perhaps a year ago when I knew less than I do now, when I couldn't get a perspective on it and when my mother had lived already a good year longer than any of us thought she was going to and looks, and she could go on living for, who knows, its open-ended really
So if you have to make decisions on behalf of somebody else you're on very shaky ground unless you can prove, I was going to say, demonstrate is a better word that you are genuinely doing it with their interests in mind and that's a big issue on occasion because of the sort of things you might be dealing with. Like giving away the brain to, for donation; like deciding to pay for a funeral in advance; like selling property and disposing of the contents of it, all those things really.
If you're doing them without the other person's knowledge, provoke a lot of questions and I have to say that although we tried to tell my mother that we were doing these things, it wasn't always possible to tell her in any way to be convinced that she understood. So we might have said it but it wouldn't necessarily have penetrated. And sometimes we didn't even say it because it would have been distressing for her, but we had no alternative but to do some of the things that were done.
I think GPs should be more enlightened than some of them are, I think they should be, as I say, give family's credit for intelligence. I know not everybody wants to know it, not everybody wants to hear it, but if a family is coming to a GP and saying 'We are concerned about our relative, there is inappropriate behaviour, this is what is happening.' I don't see that it breaks any medical ethics for the GP to say 'What are your concerns, explain them to me fully, what do you think is happening' and then put his own informed input in. And if he's asked directly 'Is there any sign of dementia?' I believe if he thinks there is, he should honestly say 'Yes I think there is.' Because people deal better with what they know than what they don't know in the end.
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