Can I just ask you if you’ve thought about the future of whether you might need some extra help?

[Laughs] There’s a pause here.

You don’t have to answer it if you’d rather move on, but.

Yeah, I’d rather not talk about the future, if you don’t mind.

Have you thought about sort of the future, how, what you might like to do if you do need extra support, care, whatever?

I haven’t thought about that at all. It is, it is funny actually you’ve got to do, I reckon that, that I’ve decided to accept and work with it, because nobody else is going to work with it for me, you know, so [clears throat] I keep on going.

But it’s, it’s not as if, I’m sort of not waiting for anything, this is it; so I’ve, I’ve just got to make what I can of it now and the future. So, I don’t want it, I think it’s important that I actually stay doing things, working at it, even if it’s just not a lot, but.

There’ll be times when I sit down and I’m thinking Lord, let it not be dementia or Alzheimer’s [laughs], but if it is that’s what it is, make new memories, make new memories, do things, write things down.

I’m now saying to my husband, “You don’t know how to use the washing machine, if anything happens to me this is what, do,” and he’s saying, “Write it down because I’m not going to remember either.” So, I’m in the process of writing things down; even, even the television, if you want it to go on that station this is what you do, and all that. So, if I don’t remember it is written down; and I think we don’t write down things enough, we think oh you have to write, oh I had a bad day today, or a good day today; no, got up this morning and I thank God I can see outside, you know, it is a new day, but leave tomorrow’s problems alone, just live for today and you, you’ll have fun.

But it’s been a good move coming here evidently?

Barbara: Oh yeah, yeah. I mean I must admit although Ray hadn’t had his diagnosis, I do remember saying to you, “Do you think,” because obviously there was quite a lot to do, “do you think you can cope with it?”

The move?

Barbara: Mm, and what we were doing, and your response to me was, did I think I could, and I said, “Yes, I think I can.” And you said, well you supposed you could as well, otherwise we couldn’t go ahead. But I mean it was mostly down to me, wasn’t it?

Ray: Yeah.

Barbara: So…

So, thinking back, I think you said way back in 2016 you started thinking about moving, moving out of the small village. So, it was sort of thinking of the future and just….?

Barbara: Yeah. Yeah, oh yeah, just, yes.

Being somewhere that was a bit more connected? 

Barbara: And it was fine while we were mobile, you know, both got cars, so did what we wanted to, it was fine, not an issue, but, you know, there comes a time when you think, well we didn’t know it’d be quite so soon, I have to say, that you won’t have two cars or, you know, won’t have one car maybe, we can manage here, especially now I’m getting food deliveries from Tesco’s or whatever, yeah.

Eric: And then we moved, decided we, there’s no stairs here, that’s one of the advantages of this place.

Ros: And if we need care there’s care available.

So, so you’ve sort of, in moving here you’ve thought about plans and sort of safety net for the future?

Ros: Yes, yes.

Eric: Yeah.

Ros: That’s exactly right.

Eric: Mm.

Ros: That’s the only reason.

So, do you want to, would you mind telling me about, you know, those, those sort of plans and what you’ve thought about?

Ros: Me? Well yes, obviously, I mean Eric’s going to be eighty-seven in February [coughs] not in the best of health, sort of a bit of a problem with the heart as well. So, if something happens it, there’s a nursing home here and care daily if you want it. So, we thought we’d get there first before, if it happens, it might not happen.

Just describe this place to me, what it is and what it provides, services-wise?

Ros: Well, it’s for, for independent living, if that’s what you’re looking for, which we are here. We can be self-contained and do everything we want to in the flat or we can join in all the activities that go on, and there are lots of things you can do, and we have joined quite a few groups and classes and there are lots of walks around, which we enjoy doing. We can walk to the town, it’s not marvellous but it’s got everything you need. There’s a little minibus that goes if you can’t drive at any stage and goes from here into shopping supermarket things. And I mean it has got a lot going for it, and very nice people who run it.

We preferred our four bedroomed house in [City] [laughs] we’ve got to say [laughs] but this is, you know, thinking ahead.

We looked at dozens of places all-round the country. Well having been a doctor I had, of course, great experience in my local care homes, and residential care homes. I wanted independent living; that was my most important thing; but also, somewhere where I could stay till I died. I didn’t want to have to be moved and so many places you could only live there until you reached a certain level of incapacity and that was not what I wanted; you make friends, you get to know the staff; and in this place the staff in a sense rotate round; we’ve got the main village and then we’ve got a nursing home and we’ve got a more advanced dementia unit, well not just dementia, where people need twenty-four one-to-one care. But the same kind of staff so you get to know them and you get to know the people and having been here so long of course I know people in all these different sections and we kind of mix, I can visit anywhere, which is lovely.

I don’t want to, I can’t claim any insight into the future but, you know, certainly if it happens as I want it to. I don’t mind be looked after, that’s not really a problem. I do mind institutions a bit and erm, and I mind how people with dementia are treated, a lot. And so, you know, there are things that losing my independence would, could involve that I’m not really prepared for, if I can avoid it.

So, it’s a, actually it’s a challenge, it’s a huge challenge to support that variety of people each living with their own experiences, unique experiences of dementia, each at very different stages sometimes as well, and integrating into spaces where people are not living with dementia too. But when it works it’s, it’s incredibly powerful for all. 

Yeah, so that’s an important point, I think, for us is not losing sight of people who live in residential care, because for us sometimes the, the feeling, I think, in residential care is that everybody’s care meet, needs are met as soon as the door is closed and therefore most services stop at the door, because that’s, that’s the kind of typical model. So, we’re doing a lot of outreach into care homes for LGBTQ people living in them and bringing them out to join our services. So, I think that’s an important point about also normalising for other people in those spaces that people are coming from care homes, for example, and might be living with, you know, different and advanced symptoms, but that’s OK, you know, like otherwise again we keep segregating at what stage you’re at and what symptoms you might be experiencing; that’s not comfortable to put into a space where people might not be sharing that, that life experience. So, by putting people together I think it starts to normalise; LGBTQ people, I think, typically are very proud of community that they, that they foster. So, where people may live without, you know, birth family or biological family or more formal networks, they pride each other on coming together to create their own chosen family or their own informal support networks; and I don’t see any reason why that wouldn’t include people living with dementia or any other health condition, at whatever stage that might be.