Living with dementia and memory problems

Well, I suppose it goes back to me having been – I have a very close friend who died with dementia during lockdown. So, I’ve been very close to someone who had been going through the whole process. And, so I probably was more aware than I might have been. And, and I also had quite strong feelings about what I wanted to do if it ever happened to me. So, there was one event that happened, actually there’s a poem about it on my blog, where I went in the kitchen and found the TV remote control in the sink with water in it. And that was enough to make me think “hang on, I need to look at this”. Because I’d been losing words, like most people do and there’s a thing that people my age do where you go round and you say “oh I’ve forgotten that” or “I’ve lost that word” and the other person says “oh I’m always doing that” [laughs].

True, yes.

I’ve done it myself. And you know, I’d got beyond that sort of place. So, that’s what made me decide to go. It was just like the whole thing switched on and I decided what to do and took it from there.

And I’ve found that I’m, I find organising things much harder. So, to me, it’s not about memory on its own, at all. It’s, it’s about how we structure and organise the thoughts and I was really struggling to motivate myself to do anything and, and to and to manage doing anything. This was one of the reasons why a cleaner because I just wasn’t able to do it. I had no idea why, I just couldn’t.

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.

I would forget things; so, going shopping, I would go out for a particular thing and I wouldn’t get that, I would get other things but I wouldn’t get the thing that I was; so, memory and recall, I started struggling with names of people that I knew quite – knew well but on a fairly regular basis and I, it always on the tip, “oh I, I know, tip of my tongue” that type of thing. So, it was [sighs] those types of things but family and friends started also; [wife], my wife, made comment about, you know, “Your memory’s not as good as it, as it used to be and I’ve told you that, we’ve discussed that, we, we talked about that,” that type of thing. Not in a, you know, an unpleasant; it was that kind of, you know, jogging sort of way. So that was kind of like the, the start to it and that was probably the year before the pandemic where I started to think that, yeah, I, is it stress, is it because I’m, you know, it’s hard at work, those types of issues; so, you start thinking, this is everything else, perhaps it’s a bit of old age creeping in and we’ll see how it goes. So that was kind of the initial bits and pieces.

So, those sorts of things that you’re describing, I think a lot of people would say, ooh, you know, that, that happens to me, I go to the shops and I forget what I go to the fridge and I forget what I’m going for or whatever, but it seems to me like it’s sort of, it’s not just a one-off here and there, it, it’s the, all of those things are happening.

No, it’s the repeated nature. So I think, there’s something about having insight into your; I’m talking about my memory, your memory, our memory, you know, you, you might forget the name of someone on the television, it’s just a one-off, but during the course of a twenty-four hour period you wouldn’t expect to have two/three/four different occasions where memory or recall just isn’t, or it’s, it’s just not there; and sometimes those events, those, those opportunities, you, I can do a complete day and everything was fine and other days I’ll have a dozen. So, it isn’t even as though it’s a consistent, it, there could be peaks and troughs between, you know, “ah, you know, this is, it’s been a” you know, I already, thing is you don’t, I never, I can remember thinking you, I don’t have good days; when it, this first started there wasn’t such a thing as a good day or a bad day, there was just days. So, then I now started seeing bad days, bad days when, when I needed more prompts, I needed to ask more questions. I don’t know if that makes sense?

Well I would say suddenly I found I’d forgotten a great deal of things very suddenly, like within two or three days I said to my wife things like “Do you know, I can’t remember such-and-such.” And, and it just went pwoof like that.

Oh right.

So, I thought that can’t be normal [laughs] because until then I had no warning, nothing. I was just a normal, assumed it was normality and that was it, and then suddenly the memory seemed to go in a matter of days, weeks certainly, but possibly even days, very quickly.

I forget, sometime I do forget my appointments and my doctors’ surgery are, phew only just down there, sometime I’ll pop down, you know, to remind me. And sometimes, and sometimes I, I have things to do; I’m not the, I’m not you, the person that used to sit and don’t do anything, I always do something, you know. But now these days I don’t have the, I don’t have the ‘go’ to do plenty things; I do something but my son, he mostly do most of it for me. No, you know I shopping, but I go to shopping, he and his father will do most of the shopping. But it’s not the same, it’s not the same as before when I could remember plenty things. I remember them and then I forget.

Barrie: But yeah, they, the time we noticed your memory loss.

Pat: Yeah.

Barrie: Was there, an event, when her daughter had been here and we were at the front there saying goodbye, she drove round the corner at the bottom, Pat turned to me and said, “I think [daughter]’s coming to see us today,” even though she’d just been here two hours; that was the trigger. So yeah, we went to see the GP and got a referral.

Pat: That’s right.

Have, have you, have you always been quite a quiet person? You’re not somebody who particularly wants to?

Richard: I used to be a loud person.

Viv: Yes [laughs], gregarious [Richard laughs] you were very social, very gregarious; that has changed, oh drastically, completely.

Just that things that I feel I ought to be remembering I can’t pull them to mind and, phew, logical progressions can’t be sought in, you know, if you can’t find; well you know that, you know that to get from A to C you need to be, you need to know B but you, you, for the life of you can’t put it to mind what that ought to be. And in point of fact some, it’s difficult to explain it because I’ve now forgotten about it, and forgetting is, is the worst thing of all. And, and memories, I think, like I was saying earlier, memories, you can’t tell which memory is which; so, a memory of yesterday you might think that was, that’s, that was today, or vice-versa, yeah?

Now, now you’ve started me. One of the things; this was; oh right, yeah, yeah. This was one of, one of the things also that sparked my willingness to, to go and get tested, one of my pastimes was researching my family history and I’d been doing it for about ten years, and started off doing it on the internet, because I was doing it sort of weekends, evenings and, and whilst I was working I really didn’t have time to go shooting off all over the country looking at, looking at records, so it was all done on the internet; and I hadn’t really realised whilst I was doing it that you actually have to have a pretty reasonable memory to hold in your head the information that’s going to match you to an ancestor. You’ve got to think about where they were born, obviously who their parents were or where they’d come from and that the, all the dates were relevant, and there’s quite, there’s actually quite a lot you have to remember just if you’re researching just one person, never mind two or three in the same family. And I was really struggling to do it using my computer and I thought this is, this is a bit odd, a bit strange, I haven’t had this before.

I know hallucinations is something that can happen with Lewy Body; is that something that you’ve experienced?

Yes, yeah, yeah, yeah, and it is quite – perhaps I should have said this at the beginning and I forgot, is the fact that there is, the hallucinations were there but of course you don’t realise that they’re hallucinations because, for me it was animals, so I might see a cat or a rabbit or something like that, and often they were in context. I might have felt or seen someone out of the corner of my eye in the office, a telephone ringing and I’d pick it up and the, but it wasn’t ringing, so they were auditory as well, but someone calling my name. So, so they are [sighs] you don’t know that they’re hallucinations until you start reading the literature [laughs] and people, then you, and people say, “Have you had hallucinations?” “Well, no, I don’t have hallucinations, I sometimes think I see things.” Oh, that’s what you mean by hallucination.

So, are you, when you experience that is it something else that’s there that you’ve misinterpreted?

Yeah, because you see I think when we talk about the word hallucination that may well conjure up seeing things that are abnormal with Lewy Body dementia some, they’re often normal, they’re not frightening and [sighs] the, you know, the presence of somebody else, it’s not something that, you know, I get frightened with, ooh it’s a ghostly apparition or something like that, it isn’t, you know, I see the cat going across, then I look again and the cat isn’t there.

OK, mm hmm.

Yeah, and the auditory ones, you know, the phone ringing, you just think oh I must have just misheard something.