Living with dementia and memory problems

So, you mentioned there that you’ve got your Lasting Power of Attorney, or Powers, perhaps, of Attorney in place; had you, is that something you’d already done or was it prompted by?

No, it was something that we had thought about once I’d got mild cognitive impairment. It was suddenly, ooh yeah, really must do that, but oh I just never got round to doing it. But then, ironically, grandchildren arrive and things and you then kind of, you’re spurred very much on to doing things. So yeah, so I’m in the queue with thousands of other people just waiting for them to actually issue the Lasting Power. But we’ve, the last lot of documentation indicates that we should be getting it soon.

Yeah, yeah. That you’ve signed it all up and…

Yeah, that’s right.

And how was that experience? I’m just thinking back to your comment a few minutes ago about saying “oh as soon as people know that you have dementia or mild cognitive impairment that” you know, they sort of question your judgement or your ability to make decisions. And I’m just wondering how that experience was if you- did you go and see a solicitor to do that or did you do it?

No, I, we did, made the decision not to go to the solicitors; we had our Will redone or rewritten December-time last year and there was the option then to be able to do it. But we decided, no, it was all online so actually completing it was relatively, I’m going to use the word ‘easy’. The hard part was getting signatures from various people, because you have to do it in a very, very strict and regimented way. So, I fell foul of the, I think it was a forty-day threshold, so I had to do it all over again. But that in itself was, was relatively easy.

I, well the first thing was that I wanted an early diagnosis, that was most- starting point. Because I didn’t want to be told “go away for a year and we’ll see what happens”. And that, I know people who it’s taken three, four years and I think those are three or four years lost that could be used helpfully. So that was the first priority for me, and then, the other thing was that I wanted to make choices about the future before I got to the point when I couldn’t make those choices.

Yes, yes.

So, that was very clear to me what I wanted, and what I’ve always felt is that I didn’t want to go on living up to a point where I’m not actually aware. so, I did spend, after I got the diagnosis, I spent quite a few weeks just going through, making an advanced decision and writing my statement and getting Lasting Power of Attorney sorted out [cough] and I found that enormously liberating.

So that we see sometimes as well. So, all of a sudden birth family, they didn’t, that ejected or rejected you from the family network start to come into, into somebody’s life and want to make decisions on their behalf about their care, their future, access to their finance, etc, etc. So that’s a real concern as well. So that’s probably something that’s quite specific to minority community like LGBTQ.

I guess it keeps coming back to this idea of chosen family; it’s such a recurring theme in all of our work that people choose the people in their inner circle, you know, there, there’s lots of different names for, rainbow family, chosen family, family of choice, inner circle, all these things, so this value of who’s in that space; and sometimes they’re, you know, ex-partners that have stayed in your life and become friends or, a real mixture of, you know, how they met and where they met and who they met and; so there’s this real protective factor that chosen family bring that can counter some of that some of the other narrative and also provide advocacy, you know.

Of course, it seems like a very tough thing to get your head around, and also to get your head around it, you know, to real, to appreciate that there’s a, might be a need to do this and who might act as my Attorney, to consider who that might be. There can be conflict again, echoing that thought about biological family versus the person I choose to, to do this; and so that can cause friction. I don’t think there’s, there’s enough awareness-raising about Powers of Attorney generally and also, I don’t think there’s enough, especially again in LGBTQ community, about advance care planning; so really thinking about what do you want for your future of care? So, putting, I think, a bit of power back into the, the mix of really thinking about how your future care, what that will look for you in order to affirm all of your complexity of identities; and I think there’s a real need for that.

Well, you don’t need to see anyone for the advance decision. I needed to do it, and I did it through a charity called Compassion in Dying, and they have an online template that you can just follow through and decide what you want on it or you’re completely free whatever you do on it. But it covers the bases that could be quite difficult to think about especially when you’re thinking for the future, in a way.

And so I found that very helpful and then writing a statement also. Which, I tend to think of it in terms of well, the advanced directive is about what you don’t want to happen and the advanced statement is about what you do want to happen. And then the lasting power of attornment, attorney is about who will support you in that happening. And that feels to me like a, a great package. It solves all sorts of problems.

So, did you discuss, you know, you got the template and you were working through that, did you discuss that with anyone along the way?

 As far as I’m concerned, it’s my decision. I don’t have a partner, I have a daughter and I talked it through with her but she was very clear that whatever I wanted was, she knows me quite well, that whatever I wanted was what she would support.

Have you not come across advance directives before?

I don’t know the process of it.

Right, and it is a legal document. It is witnessed and so it does have that kind of weight with it I suppose. And I’ve chosen to do that rather than having the caring lasting power of attorney. Because they can conflict slightly. And basically, one of the things I want is, I don’t want my daughter to have to make that decision on my behalf. I want her to be able to go in and say, “this is what my mother wanted, even if she can’t say it” not to feel that she was put in a position where she had to make the decision. I was in that position with my mother and it was not comfortable. And, yeah, so I feel that just sort of makes things clear and it’s as I want it to be.

I think a lot of people, they might think about those things but and have a preference, of course, but I think it’s such a- it’s quite big step to take to actually have that discussion and make, actually put it out there, isn’t it?

Well, I don’t feel it is particularly because for me it’s, if I don’t talk about it then I’d just be worrying about it. “When I am I going to tell people?” “What happens if something goes wrong?” I don’t know how long I’ve got, I may have, according to the neurologist, up to ten years, so, I’ve never planned for ten years in my life. So [laughs] I think that doesn’t impact on me that much. So, to me, it would be harder to keep quiet about it and be constantly be worrying that I. I think I did say to my daughter once, I’m worried that if I’m taken into hospital if there’s an incident of some kind that they won’t have the documents that show what I want. And she said, “Mum, I shall be there” and that’s all I really needed.

So, I think that, you know, you take the sunshine while you can. However, I am completely a pessimist, there’s no two ways about it. Any psychological profiling of me will automatically put me down as a pessimist. But I think, you know, I, my interest in all of my career has been about emergency planning, doom and despondency, you know. My Masters was in civil emergency management; so, if something’s going to go wrong, I’m already starting to think about the things that – but when it comes to the dementia and the Lewy Body dementia, my view is, yes, we’ll plan for these things, these things may well, you know, having a [sighs] oh, oh see I’ve forgotten now the thing the legal – LPA, Lasting Power of Attorney. So got that all sorted, a Living Will, advance directive, all of those things are, are, are sorted but I still don’t want to go down the route of seeing the negative side to it. So sometimes there are positives; I’ve got a free bus pass which is great. I’ve travelled more now on buses than I’ve ever done in my entire life because, you know, I can do that.