Living with dementia and memory problems
What it’s like to live with dementia
In this section, people talk about everyday challenges and how living with dementia affects them emotionally. People have interesting ways of interpreting how their brain is working. Sections include:
- Describing everyday challenges of dementia
- Communication and word-finding
- Memories
- How people feel about their dementia
Describing everyday challenges of dementia
John is troubled by his memory problems.
John is troubled by his memory problems.
So, are you able to sort of tell me what it was about your kind of memory that made you think oh actually this is, you know I need some, need to see someone about this, your; did you go to see your GP yourself?
I can’t, I don’t know, I can’t tell you that because I can’t fit it into anything, it was just; I can’t say there was a sudden awareness that I, like “I don’t know that”, like I’m saying now, I can’t say that. It, it didn’t really come out until well aft, after, well after retirement, did it?
Believe me, you don’t know you’ve got memory problems, you don’t know that you’ve missed something out, you don’t know that you’ve just done something three times before, like you don’t know that you put that in there because you can’t bloody find it anywhere, you just don’t know it happens, it’s, it’s; and when, when the afternoon comes down and before you know where you are it’s dark and so what happens, see this is what happens.
You don’t…this is what happened at [support group] the other day [crying].
You don’t know what, that you’ve, that you’ve done something that you shouldn’t have done because you don’t know what happened in the first place.
There are lots of things that I do, do because I know that it should be done and it shouldn’t be left undone, like the bloody postman keeps leaving the gate unlocked [laughs] silly things like that. It [sighs] it’s difficult trying to explain it. It’s, it just, it just happens and you just do it and then you don’t know, you don’t know you’ve done it so you go back to do something and you, “oh where’s it gone?”
Eric says his brain isn’t working as well as it should.
Eric says his brain isn’t working as well as it should.
Eric: Well, it’s, it’s like I keep forgetting people’s names. I mean I, I just forget things fairly quickly, don’t I?
Ros: Yes.
Eric: Some things I can remember and, from a long time ago stuff, but recent, I, I meet people and I learn their, no. I’m told their name but I find it difficult to learn it.
Yeah, it doesn’t stay?
Eric: Yes. And that’s the most obvious sort of way. I mean I know my brain isn’t working as well as it used to. I just feel uncomfortable with it sometimes.
Sir Terry Pratchett had a form of dementia called PCA, or Posterior Cortical Atrophy.
PCA affects Terry’s vision and spatial awareness.
PCA affects Terry’s vision and spatial awareness.
What is PCA exactly?
Well, I can only define it by its effects, which is really how you can.
As I said, it makes you clumsy. It, it’s visual Alzheimer’s, visual and spatial Alzheimer’s
It’s seeing things. I can look at a table and not see the candelabra on it.
And then I’ll, someone will say, “The candelabra is on the table.” I’ll look at it but look at it, and there it is. The brain doesn’t do that bit.
I see.
And it’s very weird. It’s like playing hunt the slipper by yourself.
It wasn’t just, if you told me to pick up something on the table I would go to the table and pick it up but if I was looking for it in a hurry, I might not see it was there.
Quite likely might not see it was there because at that particular point one of the little random ball bearings that is bouncing around in the bagatelle board of my head has just flipped out of the socket.
Sometimes having dementia means people withdraw from socialising or the things that used to interest them.
Richard is no longer interested in his hobbies.
Richard is no longer interested in his hobbies.
Tell me about those signs, the sort of symptoms that you’re, that affect your everyday life?
Tiredness, sometimes confusion…what else can I pick out? [Laughs] Oh [sighs] oh gosh, run out.
Have you, have you changed some of the things that you used to do, hobbies or sports or?
My hobbies have gone.
Communication and word-finding
Difficulty finding the right words in conversation was something that many people reported. Christine told us she feels embarrassed when she uses a lot of words if the right one doesn’t come to mind.
Different situations affect Lorraine’s language skills.
Different situations affect Lorraine’s language skills.
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.
Eric forgets the punchline.
Eric forgets the punchline.
Eric: but it’s very frustrating. But I mean I, it means I can’t tell jokes because.
Ros: You never could [laughter].
Eric: No, but I’m even worse, if you can’t remember the key word at the end, it doesn’t, doesn’t make it very enjoyable for others [laughter].
Ros: True.
Miss the punch line.
Ros: It’s painful [laughs].
Ray can’t find the right word.
Ray can’t find the right word.
Where do you go, where do you like to go in [seaside] for your lunch? You said you’d found somewhere nice?
Ray: What was it called? [laughter].
Barbara: I knew this was coming [laughter].
Ray: The, the some, the some?
Barbara: The Fishermen’s.
Ray: That’s it, I knew it was to do with fish.
People told us that they sometimes became aware that they were repeating themselves and that makes them feel like not talking at all.
Clare sometimes finds it embarrassing when her memory lets her down.
Clare sometimes finds it embarrassing when her memory lets her down.
If I had to use an adjective, I would just call it irritating. It isn’t trivial to me, it’s irritating.
Yes, sure.
It’s also an embarrassment at times. You know, in conversation with people you suddenly, you realise that, “Oh, heck, I think we’ve had this conversation before” but I can’t remember. Or we’ve been somewhere. I’m a member of a decorative and fine arts society, and I go along with a friend and at the end of it we have a cup of coffee, and I come home, and I can’t remember to tell [Edward] what it’s all about. It’s very, very annoying. I have to look at the programme and say, “Oh, yes, that’s right. It was.” That’s, you know, it, it impinges on your communicating with people, really, because if it’s not coming smoothly you tend to shut up. And I don’t want to do that. They might, but I don’t [laughs].
Memories
Thinking about how the brain functions, how memory works, is something that was described in interviews, sometimes in quite imaginative ways.
Memories from long ago are clear for Terry.
Memories from long ago are clear for Terry.
But, on the other hand, I have quite a treacherous memory so I can remember, if you remember earlier today, I was singing to you, bits of the Private Eye vinyl records that were around in the nineteen sixties [laughs]. Heaven knows how this ragged brain has managed to – I’ve got one brain cell marked “Private Eye scurrilous songs about Sir Edward Heath”. How, how does the memory work? Why am I wasting, you know, why I can remember all kinds of bad books and terrible movies. If only that, those brain cells could be employed elsewhere.
Christine visualises her mind as a box of memories.
Christine visualises her mind as a box of memories.
I used to be able to – I had a really good memory and I used to be able to put things into my, sort of the box that you save things in in your mind [I laughs] and I could pull them out of there anytime, but I can’t now. It’s as though it’s gone and I’ve only got one way… I, my brain doesn’t multitask, so it thinks of that and then it, I concentrate on what I’m doing and then that, it’s disappeared out again.
Clare remembers the feeling but not the details.
Clare remembers the feeling but not the details.
I had a conversation with, now was it [son] or [daughter-in-law] last night? I can’t remember. And I can’t remember the details of the conversation. All I remember was being very happy talking to my son or daughter-in-law. But I can’t remember which one it was, and, you know, I can’t even remember the gist of the conversation, except that it would be general family things. And, and came away from the phone saying, “It’s good to hear your children are happy.”
So that’s the sort of detail I’ve, I’m left with. It’s not a lot, really.
How people feel about their dementia
People described how their memory problems, and other symptoms of dementia, made them feel.
Soraya feels frustrated when she loses things.
Soraya feels frustrated when she loses things.
And it was so frustrating because I felt like I was chasing my tail all through the day. Then the worst concerns started to, things that started to really bother me was I’d have friends that would just pop in and I intro, I introduced my friend, long friends that have been friends a very long time, and I went to introduce them and I’d forgotten their name [laughs].
And then not retaining absolutely anything. I love, I remember watching, I love watching YouTube and every, loads of subjects, and I remember thinking oh this is so interesting, but then when I tried to think about what I’d, when I tried to voice what I’d heard to people I couldn’t, I couldn’t remember a thing.
Terry describes his dementia as an embuggerance.
Terry describes his dementia as an embuggerance.
It’s very hard to explain what it feels like to have this. It’s like wearing the mental equivalent of a fat suit. It ages you. I feel myself doddering and at sixty-two you are a bit too young, we believe, to dodder.
You called it an encumbrance in I thought?
I called it an embuggerance.
Embuggerance [laughs].
Yes [laughs]. Well, a bloody nuisance. It’s a it’s a sort of a military term for an absolute bloody nuisance that we can’t do anything about and it does but you it does encumber you. As I said, the mental, the mental equivalent of a fat suit and the curious thing, especially if you’ve got PCA, it doesn’t really show up that much because, as they always say, cunning is the last thing to go and people say, “But you’re chatting away and you’re breaking into song.” And doing all the other stuff that I do and I said, “Look, no.” And I said, “Well, yeah.” And people with Alzheimer’s can do that. I mean things get worse and we know that there’s an end game but, but life does not stop and, in some ways, and I the last, I would be the last person to say that there’s a good side of getting it.
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