Living Positively With Dementia

Barry is a friend of Barnwood Trust as well as being an active member of his community. He was kind enough to speak to us about his experience of living a positive life with early onset Alzheimer’s since he was diagnosed 5 years ago.

Jane: What did that diagnosis feel like to you at the time?

Barry: It was terrible at the time. It’s a horrible feeling. And I suppose I didn’t take it very well, you know. I wrestled with it to come to terms with it.

Jane: And how do you feel now?

Barry: 100% better.

Jane: Okay. So, what made the difference?

Barry: The difference is that I was very depressed and I think you know, I told you that I wouldn’t go out and see anybody, meet anybody or talk to people. And I realised there were so many people like me with Alzheimer’s, some form of dementia doing the same things. And it was difficult. Not just for me, but for everybody. So I said to Julie (Barry’s wife), you know, I can’t carry on like this. I’ve got to change things. So, I started going out meeting people, working in the community, doing things and I felt a lot better in myself, and other people were much happier. And my wife, my family were happier because it was better to be around me.

Jane: So can you sort of fill us in a little bit about some of the things that you do get involved with?

Barry: Well, at the moment I’m, I go to Northway’s singing group which is tomorrow, on a Tuesday. I go to indoor walking football on a Sunday and Northway Strollers which I used to do every Friday with yourself. I’m not the sort of person who can be sitting all day looking at four walls, you know, I like to be active, doing things.

Jane: Can you tell me about how instrumental you were with some of these groups? Because you have been a founder member in quite a few things.

Barry: Well, I think I was founder member of the indoor walking football although people like yourself and Dutchie had similar ideas, you know, we got the ball rolling. And the same with Northway Strollers. At one time we did have about twelve people, Northway Strollers walking around Northway on flat surfaces.

Jane: What does it mean to you being involved in these community things? What difference does it make to your life?

Barry: It’s fantastic. It makes a massive difference to my life. It makes me feel I’m involved, much happier. I like to, I’ve always been involved in communities doing things and I like to get things done locally and it’s great to meet like-minded people, you know. People who want to get involved and enjoy things with you.

Jane: And you’ve made quite a few friendships from some of these groups, haven’t you?

Barry: Oh, I’ve made lots and lots of friends, especially from the men’s meeting, yeah.

Jane: And again the men’s meeting is one of the ones that you were involved with from the beginning?

Barry: Yeah. I mean, Sam came to see me and she came to my house and she said to me what do you think about the idea of a men’s meeting. And the more she told me about it, her ideas, the more I thought it was a great idea, you know. Because as Sam said in her own words, “In Tewkesbury there’s a lot of activities for women but very little for men.” And it was needed, you know, so I think it was a brilliant idea and  I look forward to going every Thursday and I take Geoff with me. Now he only goes out once a week and this is his big day, you know. So, he loves going. He’s got asthma, very bad asthma, chronic asthma and he has to stop walking every five minutes and take his inhaler and have a bit of a break but you know, everybody is very patient with him and we get him there every Thursday, me and Maurice. And I introduced Maurice to go there because he didn’t know anything about it but because he’d lost his wife and he was at home on his own I thought it would help him to get out of the house and meet some of the people, you know, and he really enjoys it.

Jane: And you play an active role in running the group as well, don’t you?

Barry: I try to. I mean, I collect the subs every week. I do silly jobs, taking away empty glasses and putting biscuits out. But I enjoy talking to everybody, you know, and there are some great friendships, camaraderie.

It’s beneficial for someone like me because I’m a people’s person. I get much more out of it and I think other people do as well because it’s helped make me feel … I don’t know what the word is. More peaceful in myself now. And I mean, I have to say Julie (Barry’s wife) is a terrific person as a carer for me and with her backing, she supports me and everything and together we still do a lot of things and get involved and as the Doctor said recently when we went there, I think it was last week, she said your dementia stayed level for twelve months, it hasn’t gone up or down, it stayed the same. So, there’s no decline which is brilliant news, you know. And that’s down to medication as well as the fact that I’m involved in so many things, you know.

Jane: It seems to me that you found a really good balance.

Barry: Yes, certainly.

Jane: That’s brilliant. Thank you very much.

To read more stories like this one, visit our Stories page. To find some ideas & inspiration about what you could do in your community, visit the Make A Start page and to find our more information about our grants programmes, visit our Grants pages.