Lorraine

Listen to people with dementia; that’s the first and foremost thing. Like I’ve said previously, you have this perception of people with dementia; get rid of that perception right away. We are, we are normal people with a challenge, that’s all it is, and there are people out there with different challenges to us; it could be a physical challenge, you’ve got a limp, you’ve got pain, you’ve got arthritis, it doesn’t matter what your challenge is, we are the same as all those people. Learn what our needs are and how to approach us; that’s what I would say. And please don’t treat any of us like idiots and don’t talk to the carers either [laughs] it’s one of the worst things you can possibly do, address your questions to the carer or the husband, the wife or anybody else, don’t, just don’t. If we can’t answer a question we will turn to the person that’s with us and say; you know, I do it quite often, I have really bad word-finding difficulties and I can’t get the word out and I’ll go, I’ll turn round and go, “What’s the word, it’s like such and such but it begins with S?” you know, and that’s fine as well [laughs], Yeah, but don’t, don’t, don’t suppose that you know how to treat us, we’re individuals.

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.

So yeah, there, there has been changes made, definitely changes, in, in pastimes. Reading; that’s another thing I can’t actually do very well. I used to love to read books, I used to be able to read a book a week minimum, now I struggle over six months to, to read a book and if I do read, start reading a book, when I go back to it, I’ve got to kind of think what was this about in the first place, you know?

It’s the same if I watch television programmes that have got continuation; what’s this about, you know? [Laughs] We tend to binge watch things now [Interviewer laughs] you know, just do, binge watch it and then I know what it’s about and that’s fine, you know. It’s like, but reading’s one thing that I, I lost the ability to do, which is sad for me.

Well, how do you use your, do you use your Kindle for other things than, is it, is it one of these ones that you can email on it and things?

I’ll use my Kindle for reading, I’ll use it for emailing and I’ll use it for Zoom and Teams meetings as well; that’s the kind of thing I use that for. My phone I’ll use for browsing, emailing, Facebook, Twitter, social media, that sort of thing I’ll use it for, and, and, and searching.

I lose my routine if I go away. We go away with the business quite a lot; my husband’s got a business and we go away and staying overnight in a hotel or an Airbnb. I just lose my routine completely, because nothing is in the same place that it’s meant to be and therefore I can’t find it, you know. Simple things like, you know, bedtime routine, taking your meds, etc, etc, they’re not in the place they’re supposed to be and that throws me quite a lot, so yes.

And how, and how, how do you feel about that though when that happens; does it?

It’s something I’ve just got to cope with because we’re never away more than two or three nights, you know. It’s fine if we go away for a holiday and it’s more than a couple of nights, then I get into a routine. I’ll just place everything where I can see it and then it’s easily retrievable. So, you do have to work out strategies for different situations. That would be my advice all the time. I find it quite confusing, just now we’re putting a new kitchen in and we’ve moved everything. I can find absolutely nothing. So that’s a new learning curve for me, trying to find out where everything is now [laughs].

Yeah, yeah. I mean because those are the sort of things that you do automatically, aren’t they? 

Absolutely.

When you go to a kitchen drawer [laughs].

It’s not there, the kitchen drawers are not there, the cupboards are all moved, you know, and where is it? So yeah, that’s difficult but it’ll come; I’ll just send my husband in to find it.

So, I put things in place, because I obviously forget things like my phone, my keys, all that kind of thing. So, I put things in place, a little note on the back on the front door, to remind me to take my keys, my bag, my phone, etc, etc, little things at night. Although I live with my husband my husband’s forgetful, so I have a little list at night, you know, are the candles all out, because I love candles, are the doors all locked, are the windows closed, that kind of thing. Just strategies, strategies to help; they’re important for me. I use my, I use my phone calendar every day with alarms on it to tell me what I’m doing and when I’m doing it so that I don’t forget things. So that’s the kind of strategies I would use.

So that’s, writing lists and using your phone as a digital reminder?

Mm hmm, mm hmm.

How do you, have you got into a routine of remembering to do that and check those lists? Because I mean I can write a list, I can write a shopping list and it’ll still be on the kitchen table when I’ve gone to the shop.

I do that too. Yeah, I.

So, getting into that routine of actually following it up.

Yes, I do.

Must be quite tricky?

I do, I actually do, do it; it’s become a routine now. You know what it’s like, if you do something often enough it’s second nature. And that’s the same with people with dementia, something that you’ve been doing for years and years you don’t forget, and because I started doing that early on, I’ve been doing it for seven years now, it’s become natural. I go and check the front door, the back door, check the candles, etc, etc. So yes, it does work, so yeah. They do say use it or lose it, so as long as you keep using it it’s helpful.

Well just give, take each day as it comes. They’re not that far advanced. They don’t want groups, they’re at a stage where they don’t want groups with people that are, have got advanced dementia. And that’s why I started the group. I’ve been to a group with people with advanced dementia, I don’t want to see it, that could be my future and I don’t want to see it right now. Years to come, yeah, my husband might take me along to a group like that, that’s entirely up to him. But for now, no, we need an active group in which we can participate actively, make decisions in that group, choose for ourselves.

I realised quite early on, a few years ago, that [city] doesn’t actually have any groups for people living well with dementia. The other groups they run are for people with advanced dementia. So, I work with a lady called [dementia coordinator] who is Dementia Friendly [city] coordinator, and we got together with her and we decided we would operate a group. [city] Alzheimer’s UK have long been thinking about running a Dementia group, as they called it. So, we got together and we advertised and we’ve set it up. We started off with two couples and myself, but now we have twenty people coming out in total every second Thurday.

Oh, that’s a really good service, isn’t it? And are they the same twenty people each time, or do they?

No, same twenty people. It’s gradually, each week we’ve had somebody new coming along and we’ve now got twenty people, not all with dementia, half, slightly more than half with dementia, with their friends or their wives – that’s generally it. And we’ve decided to stop at that number because we’ve really gelled well together. The people are, particularly the gentlemen and myself, are comfortable because they feel that they are with like-minded people and they’re not afraid to say anything in case, you know, in other groups they would be frightened they would be laughed at, thought ridiculous, and they’re not frightened to speak up in this group and that’s why we started it. So, we figured twenty’s enough. We get on really well together and it’s comfortable, and we all thought to add to the group it’s going to get a bit unmanageable now.

So, it’s just a coincidence that they’re all men?

Yes, totally coincidental [laughs].

And do they, you said that they come along with their friends or their wives. And do they stay together or?

No, we all stay together. Initially [dementia coordinator] and I had thought that we had to be really careful not to let carers take over a group but we’ve found that that’s not the case here. And we did think about separating them but it’s not necessary, it just gels really nicely.

We have this saying in the dementia community, you’ve probably heard it, if you’ve met one person with dementia you’ve met one person with dementia, because we’re all different.

Memory loss was the main thing but I also, I felt that my work, I was getting a little overwhelmed, making a few mistakes that I shouldn’t have done. So, I’d gone to the doctor and he’d referred me to the local mental health hospital for assessment, did the mini mental test and I passed it; however, a few months later it was, I noticed it was just getting worse; and it wasn’t age-related memory loss at that stage because I was too young, I was only about sixty-one at this point in time, actually I was younger than that. However, I went back again, got referred back to the hospital; this time I failed the mini mental test and they did the bigger, the advanced test, and they were concerned. Sent me to a consultant who sent me for an MRI scan; I returned for the results of the MRI scan, fully believing by this time it was, it’s age-related, there’s, there’s nothing wrong with me, and he then told me the diagnosis was ear, very early stages of vascular dementia and Alzheimer’s. I came home, I cried and I got up the next day and said, “Stuff this, it’s not going to beat me,” and that’s the start of my journey.

You’ve mentioned a few times that you, you have word-finding difficulties but I haven’t, you haven’t demonstrated that at all today [laughs].

It, I 

Even though you’ve had a very busy week.

I think it’s because I’m talking about my lived experience, I can find it easy to talk about it; it’s my story, therefore I can relate it to you. If I’m talking about something else, if I was talking to you about a television programme I’d seen last night; actually I can’t remember what I watched last night but even if I could I would have really bad word-finding difficulties.

Right, I see.

So that’s when it comes out, when I’m talking about something that’s unfamiliar, yeah, but my own story, it’s really easy to tell.

Memory loss was the main thing but I also, I felt that my work, I was getting a little overwhelmed, making a few mistakes that I shouldn’t have done. So, I’d gone to the doctor and he’d referred me to the local mental health hospital for assessment, did the mini mental test and I passed it; however, a few months later it was, I noticed it was just getting worse; and it wasn’t age-related memory loss at that stage because I was too young, I was only about sixty-one at this point in time, actually I was younger than that.