Living with dementia and memory problems

So, you were saying about writing things down; do you find that you do write things down more now to, or is it just still not something you bother about doing?

No, no. I always resolve that I’m going to write things down but the resolution, you know, I think what’s the point? [Laughter].

Well, if you write it down and you don’t go back and look at wherever you’ve written it then it…

I always try to, I always try to run my life with mnemonics of some sort, you know, but whether, I don’t know what, what really mnemonics are, whether they’re things you write down or whether they’re things you make a sort of a snag in the brain to sort of try, ooh every time I do that, I must remember to do so-and-so.

Yeah. No, it’s whatever, whatever works, isn’t it?

Yeah

So, have you applied any of these sorts of strategies to your current memory problems? 

No. To be honest, no sooner as I’ve thought about the need, thought about how I would do it, I’ve forgotten it again; and this is, I mean it’s laughable but [laughs] I’ve forgotten about it, you know, making copious lists of this, that and the other, it’s a waste of space because I’ll never look at them. Although I suspect that’s true of a lot of people’s note-taking, well maybe not what you’re taking [laughs] I don’t know [laughs].

I do, we do have reminders set, we have Alexa that we can, that I can use, but the more [sighs] immediate things, it tends to be the immediate things when I can’t whip the notebook out. But I may have to get used to the idea of having a notebook and doing that. But I mean I have, I have tried and some [sighs] I mean it, I find it a little bit weird [sighs] I mean it’s small, not small things, but, when we do, when we’re out in the garden doing gardening, when I cut the grass, I have to move pots and things to cut the grass. [Wife] keeps telling me off for not putting them back. And I did it one afternoon and in the evening, I saw her putting it back and I felt so ashamed that I hadn’t done it. That had far better effect than her saying anything to me. Now I don’t do it anymore, I hope [laughs] because it’s in there, it’s in my brain, in the holding capacity. So, I’ve got better at that [laughs] but that doesn’t stop me forgetting other things, but…

No, but that’s a good example, isn’t it?

Yeah.

Because, like you were saying, you can use a notebook or Alexa or whatever to do reminders for appointments or maybe taking tablets or something like that, you know, those things that you can predict, but something like “I’ve moved that pot and I’ve got to put it back in a minute” that’s very instant isn’t it? And those are the things that you; it’s no good writing it down, is it?

You’ve got to relate it to something else; you’ve got to remember that you’ve moved it to put it, to put it back and if you’re not looking, if I’m not looking; so now, now the pressure, it’s not particularly pressure, now the position is that I don’t want to upset [Wife] so I’m going to look and make sure I’ve put it back. He says, [laughs] touch wood.

One other thing I’ve found useful is that not this year last year when I was having the, the memory tests with the young psychotherapist, very new to his job obviously and quite bouncy and enthusiastic, and he, he talked about seeing the memory as a sort of filing cabinet and if you don’t remember something immediately then you look through. You search through the filing cabinet until you find the right bit that you need and that’s great because I can get into my memory now and try and remember someone’s name from a programme that I’ve seen recently or whatever, and I think “oh yeah, I’ve seen that actress before, what is she called?” Now a lot of times I would have said “oh I can’t remember” but I, I get into the filing cabinet and I don’t panic about the fact that I don’t remember it. I just think “oh in five minutes it’ll be there” and nine times out of ten it is. So that works very well, and I’m endlessly grateful for the, the idea that, that he gave me of the filing cabinet.

So, so you, you sort of process it in a way that you know that you can look for it in sort of different places sort of thing?

Yeah. And to give an example with names, the exact name probably won’t come up for me but I’ll come up with something similar and then thinking about it you, through that link it will eventually get me to the right name, the name that I need, you know. That’s one process that’s really helpful. The other thing on, on the telly as well, I think “oh I’ve seen that actor, that actress in something else” so it goes back to whatever I’ve seen them in and then back from there to their name and, yeah, it’s very odd.

So that’s like taking a detour, you know, to the?  

Yeah, yeah, it’s very odd, isn’t it, the way the brain functions?

No, that’s a really good strategy though and, like you said, not panicking about it, just kind of, I guess, leaving your brain to work in the background kind of thing.

That’s right. Yeah, I mean I thought it was a load of nonsense really. But, [name] he was called, talked to me about the idea but I, you know, thinking about it afterwards, yeah, it’s been helpful. I mean stuff like using a, putting your diary on your smart phone, that went straight over my head. But he, some of the stuff he passed on was very useful and that example that I’ve just given has been, you know, invaluable.

Most of the other, there aren’t many other problems except the perennial leaving the keys somewhere, which is I suppose everybody’s problem. But for me it’s, you know, I can put the keys down and forget where the keys are in the same movement. It’s not a case of, but again, one learns things, voices are good. If I say, “I’ve put my keys on the side of the desk.” I will later remember me saying that.

I have to kind of work, and that’s really, I assume this is the same for people with, what you might call ordinary Alzheimer’s. You have to work at things once upon a time you didn’t have to think about. like going to public toilets. These days there’s, normally, several doors you have to go through even before you’re gonna get to the place where, as it were, you’re going to perform and then, there will probably be a kind of area with several different, seven different… see, PCA is just happening. The word has dropped out. You’ll go through this door and there’s a door to, there’s the door to the ladies, there’s the door with the fire extinguisher stuff in it and there’s the there’s the door for all the stuff that the janitor uses. And you’ve gone through several doors and you can’t remember how to get out [laughs].

Because there is no obvious way and I had a mnemonic for making certain that I never go into the ladies toilet, which is always go into the one that shows the lady with the slacks. Never go into the one with the Scotsman in the kilt. And so, this is so ridiculous that it works. Because it stops and makes me think and actually, for the person the person with PCA, life is a series of make shift arrangements.

I think you described it as work around somewhere.

Work around, yes. My life is a work around. We work around life.

So, how do you manage; do you have, do you have sort of tips and some ways of making sure you remember and get all those little jobs done?

What my psychotherapy tells me, if it’s in the front of your head you will remember it. So, what she says, “Try and put dates, do something wherein you remember, you will remember what you have to do.” So, I thought OK, if somebody says, “Right, I need something for the eighteenth.” OK, I’ll put it on, say “oh so-and-so’s birthdays on the eighteenth, oh OK” so I’ve got the eighteenth in my head. I’ll start it and make sure that I start everything early knowing; and sometimes for days I keep saying “OK, I’ve got this, the eighteenth, the eighteenth.” I keep repeating things to myself sometimes, you need to be starting now so you can get things finished and, yeah. I sometimes write things down but I never know where I put the pad or anything. I’ve got loads of pads about the place and I’m thinking I’ll do a shopping list, and then I’ve got to the shop, where’s my pad gone? It’s not here. So, or I’ll take it, forget I have the pad in there and buy everything that wasn’t written on the pad. So, I just laugh; if you don’t laugh at yourself, you know, so. I keep saying to somebody, “I think I’m enjoying my memory problem” [laughs] because if you don’t remember anything [laughs] you can’t get in trouble [laughter]. Oh…

Well, that’s one way of looking at it, isn’t it, yeah.

Yeah, I say sometimes I don’t remember things and it’s trivial and sometimes you think “God, if I did remember that” so-and-so, but, so no.

But, so your, so your tactic is to try and sort of embed it in your head?

Yes.

Rather than rely on writing things down?

Yeah, because I move things around and I never can find them, you know, so. And then what I say to people, “When you send me a job, WhatsApp it.” Yeah, WhatsApp it, I’ll go through my WhatsApp and I know what’s there to be done, but.

What, what sort of thing; do you have any sort of strategies, if you like, that you, you know, so that you, to help you remember your appointments or… well I can imagine that’s your strategy is it? [Laughter.]

Exactly, yeah, yeah, yeah, yeah. Sandrea looks, yeah, we’ve got a board in the living room and it’s got all the appointments on it and the days, the times and what have you. And I look at that on a morning and think all right well I’ve got that today and that tomorrow. It’s full is the board like with all, all these different things, but yeah, and Sandrea does a marvellous job for me and…

That sounds really, like a really good idea; so what is it, like a?

All it is a whiteboard with the dates on of different things where we’re going; I mean it’s full at the moment, I think just about, of different, different things that we’re going to or people coming here or whatever, you know. So yeah, I find it very helpful.

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.

I mean everybody forgets where they put things. I tend to be fairly conditioned in that respect, and I try and always put things back in the same place, because I don’t stand a cat in hell’s chance of remembering otherwise. So, you know, I hope that – and Edward does as well. So, we do try and be quite disciplined about where things go. I mean, at the moment we’re in a complete state of chaos because we’re decorating the sitting room. So that’s not making life any easier. But it’s all right, because I know that things have got to be in a certain area. And so far, I haven’t lost the chair I normally sit in, so we’re okay [laughs].