Tom's story

This video is an interview with Tom, whose partner Malcolm has a diagnosis of dementia. Tom shares the story of their life together, and explains more about the personal help he gets from their Memory Support Worker.


Video transcription

Tom: I met Malcolm in 1968. A long time ago. We’ve been living together since then, of course. And we had a very good retirement.

Malcolm’s problems started, I think maybe, when he had a second mini stroke. He had a second mini stroke over 18 months ago. And within a short time after the stroke, we were aware that his memory became difficult and we lived with it for quite some time. But it was difficult.

We then eventually found our way to the GP, but of course GP’s weren’t easily available for a long time – we had the pandemic and other difficulties and it was terribly difficult to get to see a GP, but eventually we got to see our GP, a very busy, overworked GP and we confided in him about the memory problems, which he suggested were a direct result of the stroke, and he suggested that we seek help from the memory clinic.

TITLE: How does Tom & Malcolm’s Memory Support Worker help them day to day?

Tom: I think sometimes maybe some of the things I’m asking are so basic that I should know them myself. I shouldn’t have to ask anybody, but I remind myself that it’s a new a new situation for me.

I contacted her when I was getting nervous about the medication and the side effects, and then she opened the door to me to talk to, I’m not sure who I talked to, but somebody who’s organised the doctor to ring – Dr. Hutchinson, I think, a very helpful man. We had a long chat and he’s very, very helpful and we sorted out the medication problem.

She advised me six months ago about practical things – the Attendance Allowance. I’d never heard of it, of course. And so she advised me that I ought to explore that. And after a lot of consideration, and I did meet another carer, who’d been in my position, and she applied for this Attendance Allowance, so she helped me with that. And I would say to anybody in my position who are suddenly told that there might be some financial help available, it’s not a great deal of cash, but it does help to compensate for the extra expenses you have.

The best advice I had was from my support worker, it’s to contact Age Concern. There’s a lady who works with Age Concern, who she seems to be mainly in position to help you with filling in these difficult forms. And that was invaluable. Absolutely invaluable.

TITLE: Being welcomed as gay men by our service

Tom: I got it into my head from the beginning that I was going to be in a particular difficult area, that most of the people seeking help are heterosexual married couples. And I thought ‘there’s not going to be many people from the gay community’, but there are a few. I’m not by myself. And so it was a great, great consolation to me and reassurance to me when I found that everything was open to us in the same way.

There was no sense of discrimination, or there’s no whispering when we went in the room and that’s been very, very reassuring. I’m sure that anybody else would find it the same way. And I remind myself that there are many, many people in my situation. I’m sure I’m not by myself.

TITLE: The value of having lifelong support from the Memory Assessment Service

Tom: It makes a big difference to be able to talk to somebody, and I feel terribly sorry for people that I haven’t got this opportunity.

I suspect, well, I know one or two people – one person I used to know many years ago, lives with an elderly mother with memory problems and obviously early dementia. And she’s very, very hesitant to seek any help because she’s embarrassed, I think, and doesn’t want to quite admit it’s happening and she hopes it’s going to go away. And I can understand that.

Some people might well feel ‘it’s not something I want professionals to deal with, this is a very personal thing’ and…

But yes, for me, it’s been invaluable to have contact. I guess as the years go by it’s going to increase to, you know, more contact and I suspect. Yep.

TITLE: The value in planning for the future

Tom: And I am also aware of, as I’m getting older myself that I’ve started, or we’ve started talking about if anything happened to me, what plans could we make for that? And that’s a big, big issue I think that we need to talk about.

You know, we don’t see it quite eye to eye about this, but I am pointing out that if anything happened to me, Malcolm couldn’t possibly manage a house like this by himself. And we’ve got to start thinking about a flat, I think, we don’t want to but we’ve got to, I think. It’s on the agenda for the future. I think there might well come a point when we do need more support.

Malcolm (off camera): Very pessimistic.

Tom: Pardon?

Malcolm (off camera): That’s very pessimistic.

Tom: Oh, no, no. I think we’ve got to be realistic, though. It’s good to know that there is, there are people that can help us if we need it. Yeah.

Malcolm (off camera): We’re doing alright now, aren’t we?

Tom: Yeah we’re alright now, yes.

Malcolm (off camera): I can still up to 10, and all the rest of it!


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