Living with dementia and memory problems

So, if you had a piece of advice to give to someone in a similar situation to you, what would it be?

Derek: I would say; I’ve been practising this [I laughs] don’t look back, look forward, because you can’t change what’s gone but you can do something to look forward. Because it’s this “why, why did it, why has it come to me?” I don’t take that all; and I sense a lot of people will do. Why is it me and not [name] or something like that or; and that, that resonates me, because Lorraine, Lorraine struggled quite a bit in terms of, you know, she loves me so much and it’s troublesome for her. And like we’ve touched on like, you know, we can’t change what’s there so forget about going there; that’s my thing now, I would say.

No, that’s, that’s.

Lorraine: Well Derek’s always said to me, “It is what it is.” But that doesn’t always help me [laughs].

Derek: No.

No. But you’re, you’re making the best of your situation.

Lorraine: Mm.

Derek: Yeah, yeah.

And, like you say, you can’t change things, so.

Derek: So why worry about it, yeah. It is what it is; I use that a lot don’t I?

Lorraine: Oh no, I’m in admiration for Derek, I really am, because he’s faced it head on from the beginning, he, he’s never detracted from his path forwards with it and, yeah, he, he has just met it head on really.

Derek: Mm.

Lorraine: Haven’t you?

Derek: Mm.

Lorraine: Yeah, and I, I think that’s great. And if I meet someone, I tell them how proud I am of my husband and how he’s dealing with this. He’s never; you know, and I’m sure there are times, and anyone would be lying to say they don’t have a little scared moment of thoughts, but that’s nothing to be, you know, feel bad about; I think it’s just how we are as people.

Derek: Mm.

Lorraine: But no, Derek is a real great guy in how he’s facing all of this and he still also tries to, gives me support, which for someone with his difficulties is an admirable thing to be doing. So, I’m proud of him.

Derek: Hey, well done.

What would your advice to, be to someone who, who is in a similar, you know, has recently had a diagnosis perhaps and they’re worried about their, what they can do?

I think you’ve got it right there, the focus on what they can do rather than the, the focus being on what they can’t do; and that’s going back to the media, I think they’re focusing too much on what people can’t do once they have a, a dementia diagnosis, it should be the other way round, what they can do, yeah.

Just what I said, don’t be inhibited by your, your, your disability; it’s, it is a disability, it’s recognised as a disability, it’s not, it’s just a different level of ability, and recognise your different levels of ability. Don’t be depressed or frustrated by what you can and cannot do, accept your, what you can do and be proud of your achievements, look for your achievements in fact and be proud of them. Don’t be afraid to tell people what you need, don’t be treated in a way that is offensive or derogatory or insulting or demeaning, tell them. Look at the words that are pouring out of me just now but don’t, don’t accept it, speak up and say, “I don’t understand that, could you make it simpler for me please?” Don’t be afraid to say, “I have dementia.” It is not something that’s to be mocked or anything else, it’s certainly nothing to be ashamed of. Be proud of what you are, you know, tell people, “I’ve got dementia but I’m, don’t understand what you’re saying to me just now.” So, you know, live up to your self-worth; that’s what I would say. You can do it, you can do; and if you can’t so what? And that was, that’s what I would say.

If someone’s having concerns about, about that, what would your advice be to somebody to sort of tackle those problems with their memory?

I would encourage them to seek the doctor’s advice. And the doctor will help whatever way they can, they will help.

Yes, and eat healthy, eat healthy, you know. Avoid starchy food I don’t want to eat, I eat much vegetables, plenty vegetables, fish. Me and my husband are not bothering about meat, you know, we not bothering about stop eating meat. We don’t stop but we don’t eat it regular we mostly eat fish, plenty fish and vegetables, you know. Because I think too much of the meat is not good for our age you know.

I see.

Yes, and plenty fruits. We eat plenty fruits. Plenty orange, satsuma, plums, orange, banana. We buy every fruit [laughs]. Oh dear, yes, yes.

Don’t panic; I think the very first thing, because I think, you know, that there’s that, you know, it’s like being told, I can imagine it’s like being told you have cancer. You have it and you had it before the diagnosis, you know, so it’s, you haven’t changed as a person, you, you’ve just got a label. I would suggest certainly using the national support services; there are so many, you know, Alzheimer’s, Dementia UK, all of the Parkinson’s, the Lewy Body dementia, they have got, the websites are very rob- I think very robust, and I, that’s from critiquing, I would say, as well as, you know, like the, the, academically I think that they are robust, they, they give sound advice.

Keep an open mind, ask all the questions you want to ask and make sure that you’ve listened to and understood the answers, and if you haven’t got the whole information, go back and ask again and don’t be frightened of doing it, which is, is always what I’ve done really, that; you don’t, you don’t know if you don’t ask [laughs].

I mean you make a good point, you know, sort of make, make sure that you understand what people, because it, when, when that information’s being thrown at you it’s difficult to sort of take it all in isn’t it?

Yes. I have to say I’ve been talking to [wife] about it; I, I can’t remember [laughs] because I’ve got a memory problem, is my excuse and I’m sticking to it.

Talk as soon as soon as you possibly can to those around you that are going to be more directly involved, you know, husbands, wives, partners. I mean I was very, very fortunate that my wife was with me throughout the journey, right the way through, so, and that has been really important, because whilst the message has gone in here it’s also gone in somewhere else and sometimes the message goes in here and doesn’t always stay, or the message do, goes in but isn’t fully taken on board, whereas when the message has gone there, you’re then able to compare and have those conversations. So, you know, don’t, don’t go alone, take someone who is going to do; they, you know, I, I think it’s, take someone who you want to speak on your behalf, if you wanted them to; if you felt as though you couldn’t speak take someone who would speak for you; and I know that that can some, you know, I, I’m very fortunate that can be my, I’m lucky because I, that could be my wife, it might not have been my wife, it might be, you know, your best friend that could speak for you. So, I think, you know, those are the, the bits of advice.

Well to try not to argue with your neighbours [laughter] to try and just be good with, with everyone and to love everyone; I know that’s difficult and it maybe seems a bit, you know, bibleish, but I don’t think it is. I think it is good to be happy, you know, and try and get someone else to be happy if they’re sad. It’s, it’s always nice to help someone else, and I’ve been helped by people and it’s, it’s wonderful. Mum and dad taught us that.

OK, because I’m a Christian my everyday life start with a prayer and my prayer is, Lord give me widom for today, give me some strength and some understanding. That will set me off for the day. If I have widom and understanding and strength I can go through the day. And don’t take yourself seriously, try and laugh at your mistakes.

I like to look on the bright side.

They tend to be quite [laughs] well you do seem to be someone who looks on the bright side.

I do.

You’ve got a very positive attitude, haven’t you?

Mm, I do. I, I always say, well what’s the point of being miserable, if, if you’re just going over things and er-er, well you’re just making yourself miserable and you may as; I tend to think what’s, what’s nice about this thing, what’s good about it or, and I think it’s better because you’re, you’re not making yourself miserable and you may as well just go along with it [laughs].

I would say relax and don’t take yourself too seriously; that would be my comment. Because anything that changes about a person, because it’s personal to you you’re bound to, you don’t want that change, you want to be you and going forward and talking to people, and until you learn to relax and deal with it then you’ll never be that person again. So that’s all I can say about it.

Yeah, that’s a, that’s a good piece of advice.

Mm.

So, do you feel like you have managed to achieve that, you know, relaxing and becoming yourself again?

More or less; I’m a lot better at it now than I was, yes [laughs] it’s easy to say those words but it’s not easy to always do it, yes.

What would you say would be your message to other people who are feeling they’ve got some memory problems?

Just try and keep busy, get something to do, keep you occupied, and think about, you know, think about things that you used to do; get your family together, if you have got them, and have a good laugh about things that you used to do or that you think was stupid [laughs] yeah, just keep busy. Join a group, walking group or even a group that play some games or the other.

So have you got sort of advice on what you would say, what should people do if they think they’re struggling with their memory?

[Laughs] Forget about it [laughter].

She says “You are getting on in age, so what to do. You go to this clinic that I’m sending you. You go there and you’ll see many other ladies like yourself, same age. You can meet other people to talk with and they can tell you things from their past and you can them, you know, and gradually you’ll be surprised to see how things come back to you, and your health will come back to you.” That’s what my daughter tell me.

That’s a hard question.

It is, sorry.

I wouldn’t know how to, how to answer that, I’m sorry.

What about what advice would you give yourself? [Laughs].

Keep going. Keep going and don’t stop.

Because I had so many shocks in life, I feel I’ve got to be ready for them [laughter] but I’ve realised that you just have to enjoy the day at the time – no use being miserable thinking what might happen, you’ve just got to, you know; had a lovely day yesterday over there and that was great, you know.

So, enjoy each day as it comes kind of thing?

Mm, it’s hard to do that really, you know, because you’re used to planning things and it feels a bit out of control in a way. But yeah, you’ve just got to enjoy it when it’s good and not get yourself ready for the bad [laughs] because you might not be here anyway [laughs].