Living with dementia and memory problems

It was, but also at that stage she said to me, “Well Howard has Alzheimer’s.” And I said, “Well I thought he had dementia.” She said, “Well he has, he’s got Alzheimer’s.” But you see – we, I didn’t understand, I now understand dementia is the umbrella name, as cancer is, and the type of dementia Howard has is Alzheimer’s, so, and we’re reasonably intelligent people but I had not twigged to that and nobody, you know, nobody actually sort of explained to me, and I now know there’s like ninety to a hundred different types of dementia.

And he said “well there is some cognitive impairment” and there’s only, there’s, the statistics showed that it was about a 50-50 chance, either that it was just Mild Cognitive Impairment, as I get older or it could be dementia and Alzheimer’s probably and the only way to find out was to have a PET scan.

So, the PET scan happened and the neurologist went away on holiday which was very inconvenient of him [laughs]. But eventually, I rang the hospital and said “can I find out the result” and they actually emailed me and said, “you’ve got Alzheimer’s” [laughs]. And some people might say that’s a dreadful thing to do, but actually for me, given who I am, and what my approach to this is, it was absolutely fine because by the time I saw him, which was a week or so later, I had time to process it.

So, what was the diagnosis that you were given?

Barbara: Do you remember?

Ray: Was it – well there were two things weren’t there?

Barbara: Yeah, you know what they were?

Ray: Yeah, but I can’t remember what they were called.

Barbara: [Laughs] It was, it was mixed dementia, Alzheimer’s and vascular dementia.

Lorraine: Well [name], one guy there, he’s ten years older than Derek and he’s got vascular dementia, but he helps Derek [laughs] and he’ll do you cups of tea.

Derek: Yeah.

Lorraine: And he just looks out for Derek, which is nice.

Derek: Basically with, with the cup of tea, it, if I, if I make one myself and then I try and put it down, I don’t know whether I’ve took it too far along and then.

Lorraine: Oh it’s.

Derek: I look back and it’s all on the floor because I’ve missed where I should have put it.

Lorraine: With, yeah, with the PCA Alzheimer’s, you know, it’s to do; like, you know, edges of tables can be a problem. In fact, I found a very good film on it the other night, didn’t I?

Derek: You did, yeah.

Lorraine: On the internet – was it; oh something, I Can See You, or something like that. But it was very interesting about the actual PCA.

Derek: Yeah.

Lorraine: And listening to people with PCA Alzheimer’s, describing how they see things, and the ultimate thing that’s said at the end by one guy is, “I can see but I can’t see,” and; because obviously the messages from the brain for Derek, so such as judging distance for things or even reaching out for something can be difficult for Derek.

Derek: Mm hmm.

So, which came first, the diagnosis of Lewy Bodies or Parkinson’s?

Right, so I can tell you the entire story; would that, would that help if, if I told you my, my, my entire diagnosis?

I didn’t think, I didn’t think I had dementia, I didn’t think I had Alzheimer’s in particular, I, let’s, let’s say that I didn’t think I had Alzheimer’s and I had all of the tests, was then seen by the consultant psychologist within the community mental health team who said, “Well I think you’ve got mild cognitive impairment; however I also would like you to be seen by a neurologist because you, there is a slight tremor and I think it would be useful.”

Eric: I mean I know my brain isn’t working as well as it used to. I just feel uncomfortable with it sometimes.

And so did that sort of prompt you to go to the GP about it? 

Eric: Well I went, well I was having trouble with balancing, wasn’t I, and?

Ros: Yes.

So, is there a, was there a connection to, you said you were sort of feeling a bit wobbly, is, is there a connection between those things?

Eric: I think there is a, there, it’s, it’s happening, I mean things are changing, I, I know, and I’m really not able to do what I was able to do before, which is a bit disturbing.

Ros: It was the beginning of Parkinson’s, which includes being a bit unsteady, but really, really.

Eric: It’s my walking I’ve got.

Ros: Walking, yeah.

Eric: Noticed and.

Ros: Mm.

So, did you – have you had a diagnosis of Parkinson’s, is that the?

Eric: I think I’ve had a definite, haven’t I, been told I’ve got Parkinson’s?

Ros: Mm, cognitive problems.

Eric: Oh yes, cognitive, well, well. And I’m supposed to do exercises every day and, and try and do, remember to do things. I, it tends to make you a bit unable to do things [laughs] that sounds a silly thing to say – things that you think you didn’t think, think about, twice about in the past you find you’re having to work at and it, it just doesn’t come out right and I think you think my judgement on things changes.

Ros: Yes, it has.

Do you want to describe what you mean by that?

Eric: Well, when you’re making decisions about, well say, say moving there’s a lot to decide and I’m pretty awful at that sort of thing now. And my, my job was a lot to do with decisions when I was doing it and I think I did it reasonably well [laughs], but I couldn’t do it now, I no way I could tackle being an actuary now.

I knew that when you got older that you couldn’t remember things; it was something that people always said to each other, you know, “Ooh, I can’t think, I get upstairs and I can’t, I, what have I come for?” sort of thing. But I was realising that I couldn’t remember things from a min, a second ago, in my head, I’m going to do that now, and I, I thought that was really strange, you know, that I; this wasn’t like normal, like just going upstairs, it was like I needed to do that, it was important, and it was only a second ago I thought it and then it’s gone from my memory. I found that I was missing my words and, really badly, and forgetting people’s names that I was sitting opposite. It would be that sort of thing that really got to me. I mentioned it to my husband at the time and he said, “Oh no, no, everybody does that, don’t, don’t worry about it, don’t worry about it.” I said, “I am worried about it,” I said, “it’s not just normal.” And so, I went down to the doctors and I said, “I’m really worried about this, I can’t remember things.” So, I was put on a, given a test that they give you at the doctors and I was fine, and they said, “It’s not your mem, it’s not your, your memory, it’s your tablets, you’re on such-and-such, Pregabalin makes you forget, it relaxes the nerves in the body, you have it for your neuropathy because it relaxes the nerves and then it; so, you don’t remember things as well. Well, when I went to see the, the consultant of neuropathy he said, I told him about it and he said, “Oh you’ve got, you’re not to worry about that, that is your tablets.”

I think I won’t give into it until I really, really have to. And it may not be Alzheimer’s, it may not be dementia – it could be, it could be just accumulative, just masses of stress, it could be my diabetes, but I am a coward when it comes to the mind things, yeah.