Interview 54

Well some people might think that's deceitful but from what I've seen and the way that my mother has improved, and I mean there has been a big pick up in the last 6 months. Let me think, how long has she been attending [name of voluntary agency] meetings? Maybe not that long, let's say 4 months, 4 or 5 months. And certainly my mother's live in nurse/ you know, the paid nurse that lives with her notices whenever she comes back from [name of voluntary agency] meetings she's really buzzy and she's really confident and she's really relaxed. 

So clearly the [name of voluntary agency] approach seems to work and certainly we find in doing a sort of mini-[name of voluntary agency] in the home of letting her lead, taking on her reality, not saying 'No, no he died' or taking on their reality as you absolutely say, that's the thing, yes, you do collude. You, you sort of feel 'Am I entering into a kind of pact with some kind of madness here?' You know 'Am I colluding and is it all going to end in tears this collusion?' There's a slight worry there, you know, if I should say 'Oh yes she's coming in a minute' as you say or whatever, so when that person doesn't turn up is it all going to end up in tears. 

But it usually doesn't actually, which is strange. But it is rather strange for the carers that because you are entering into a slightly fuzzy world and it does sort of slightly maybe on a level make your brain feel a bit funny. But I still feel it seems a very effective approach.

I mean we very much look to their guidance down at [name of voluntary agency], very much so.

Was that a difficult decision, to go for a nursing home rather than some other arrangement?

Well certainly the whole nursing home debate, I mean we're four sisters and we're all strong characters has, is, is ongoing, it, the debate rages on. Two of the sisters, my sisters feel that she should stay in her own home for longer with a carer. Myself and another sister feel 'cos we've found such a lovely place which is very specialist in the treatment of people with Alzheimer's and is a very caring place that it would be better for my mother and all of us if she was in, the home.  

So we're sort of tugging. You know, January really is the crunch time because then we'll know if there is a place available. You know, in a way it's, what can I say, you know. In some ways it's great to have four of you 'cos you can support each other and in another way it can add difficulties 'cos also four characters have to make one decision. 

So there's a lot of emails that get written, a lot of phone calls. We've probably become closer because of it. I mean, as I say we've had, more arguments, we've had more heated discussions and stressed sort of debates 'cos obviously what happens to your mother or any aged parent is a very emotional issue and we're all very close to my mother. So we all have a very good relationship with my mother.

So I think we, the four of us I know, often several times a week lie awake at night thinking about it. Thinking about what's the right thing and what isn't the right thing, tossing, turning. Then it's the secondary repercussions about 'Should I have said this to such and such a sister?' or 'What does she mean by that email?' or 'I'll have to talk to her separately'. You know, we have a lot of side group meetings.

And I think it's coming to a head with us actually Clive because my mother's about number three for [name of home] which is a home near [town]. She's on the list at about number three so probably Jan/Feb time we'll know that there's a place coming up. That's what we've been told. So there might even be a place next March or April and two of us at the moment think we definitely should go for that because the stress is actually, it's creating for the whole family group and I think if anything I'm very aware of the stresses it's placed on us all and our own inter-relationships with each other.

I would say, you know, there has been some, you know, in the heat of the moment because it's a very emotional subject about, also with, when there's four of you caring for one person, who does the most is always the biggie at meetings. People feel over-loaded, we're all busy people. Three of us have children and jobs, we all work full time. That's always a heated one, about who seems to be doing the most. The other is who doesn't get thanked by anybody or who does get thanks. You know, about how we acknowledge each other in a sort of long running group. 

Because if you've been going for 3 years and you're meeting regularly I think it sort of, it does affect your relationships. I mean I would say that I, for, have fallen out with one of my sisters about all of this and that relationship's sort of not in a very good state 'cos of things that have been said over the years about 'Why haven't I done more? Why hasn't she done more?' You know there's been some sort of nastiness that's come through because we're, we're all people under pressure.

She's eighty one and she has had Alzheimer's for, let me think, in terms of how long we've been aware of it has been the last four years, let's say four years. Perhaps a bit longer than that, maybe it was about five years that we suspected that she was, you know, rather vague and we put it down to old age. And I think there was probably then a couple of years that we kidded ourselves - I have three sisters - that there was nothing wrong with her at all, as you do.

Now I, certainly one of my sisters felt her driving was risky and I didn't. And I felt it was a bitter blow for her to lose that car but sure enough she did because the doctor wouldn't sign the thing saying she could keep it. So I went and saw the doctor and persuaded him, the local doctor, to sign a form for the police saying that she could drive, you know, etc, but he wouldn't 'cos he said 'You'll never forgive yourself if she's in an accident'. 

My feelings were that it would have such a bad effect on her not having a car that, you know, if she had an accident, well obviously that would be terrible, but in a sense it was the quality of her life that I wanted to keep up.

So there were heated debates about that with my sisters and one of my sisters was more keen that she did lose the car and then I had the very painful job, and this caused a lot of friction between me and my three sisters, I volunteered to be the one to go and take the keys off her, the car keys. 

And that I have to say Clive was the most horrible time I've had. I was crying before I had to do it because it felt like, just taking someone's freedom away. You know, someone who was always so independent and it was horrible, it's making me feel tearful now just thinking about it. And of course you know, then my other sister turned up with a whole weekend of circular questions 'cos her memory was going then, this was about two years ago, about why and how unfair and outrageous and she went to a solicitor and what an ageist society we live in and blah, blah, blah, blah, blah. And we had to hide the keys. So that was grim and I have to say for me that makes me feel a horrible thing, it was horrible to do that to an old lady and to your mother, yeah.  

That was my worst point. And I don't think anything will be as bad again. And so much so that I felt so angry with my sisters afterwards I did write them a letter calling them cowards and everything else. 'Cos one of them was meant to come with me and she didn't and I was very annoyed.