Living with dementia and memory problems

And have you been back to the memory clinic since or?

Barbara: No. What happened then was they did ask about did we want referring to the Alzheimer’s Society.

Ray: Mm hmm.

Barbara: And to talk about medication; because Ray’s got a left bundle branch block in his heart this would be the main three medications he can’t take, there was only one he could take. We had three cancelled appointments with the nurse to come round to talk to us about it, and then eventually a doctor came, who actually, I have to say, was very helpful; this was after we’d, he’d had the fall, it was after the fall. And he tried Memantine, he’d agreed to go on a trial of Memantine, which you had done, and he was on the titrate, so he was up to the maximum level. Then we saw a neurologist because of his fall and then that was diagnosed he’d had a seizure; so, because of the seizure he had to stop taking the Memantine. We saw another neurologist, this is nothing to do with the memory clinic, this is separately, we saw another neurologist who said he thought he didn’t see why he couldn’t be on the Memantine. When I contacted the memory clinic about the seizure and he’d basically had to come off they said they would then discharge, be, probably be discharging him from the memory clinic if he couldn’t take the medication, which I must say I found very hard. Anyway, he has started again on the Memantine on a; what do they call it? A cautious amount and we had, [clinician] came round a month ago it must, no, about two weeks ago, I think, he’d done a month on the lower amount and has been stepped up.

Daughter: You take tablets, don’t you, dad? Tell Lyndsay [researcher] about the, the tablets and how they make you feel.

Lawrence: The, oh the tablet, yeah, oh the tab, yeah, yeah, they do come and go with the, with the; it’s a bloody nuisance isn’t it, so.

Daughter: Tell Lyndsay [researcher] about your headaches and your…

Lawrence: Yeah, the headache, oh yeah.

Daughter: Mm hmm.

Lawrence: The headaches co, you know, come with; like, like this morning it was a bit – you know. But what, I’m getting, getting through it. I mean I like, you know, it’s, it, it, yeah, it, it’s, I just, I carry, go through, and if I do it’s not too bad but yeah, it’s.

So do you think, I think it’s Memantine, the tablet that you take, you said; I think that’s what you told me on the phone.

Lawrence: Yeah, was it on, right, yeah, yeah.

And so, do you think that’s what causes your headaches or, sorry, I didn’t, or is it just you, you, you do, you already have, get the headaches?

Lawrence: Just to, if you get the tablets, we, we tried, yeah, yeah, to, to, the, the ones I’ve got now are just, there’s four, was there four, sometimes there are five, you know, tablets and, well they, they, but it’s, what they do, it’s not, it’s nothing serious, you know, so.

You get through it?

Lawrence: I get through it, oh yeah, yeah, so.

And is that, that seems to be maybe the way you approach everything, you’ll just get through it, carry on?

Lawrence: Yeah, I suppose to – I have to, yeah, yeah, I’ve got to do.

Daughter: They’re always changing them, aren’t they? [Laughs.]

Lawrence: Yeah, oh they change, yeah, they do change them.

Yeah. And does that, does that affect you when they change it, do they?

Lawrence: Yeah, they do. Li, it’s like now, now, from two, two hour, an hour, two hours ago, I took a tablet and it’s, I can feel it goes, but I can find it, fight it, I should say, I just keep going.

But do you feel like it has a good effect, it’s worth taking them, is it, does it help you overall?

Lawrence: It does the, to a point, yeah, yeah, it does help a bit. So, it’d be nice if it had been just normal but obviously it’s not, it’s not so different at all, it’s, it’s, it is, it’s, not brilliant at all.

I’m now getting used to being on patches and the things that do, do cause a problem that; and, and of course now I’m on stronger ones then they’re, those are slightly changed, so. But the message I’ve had, and I know; see my doctors’ surgery don’t prescribe these, they’re, they are available on the NHS but they can’t advise me how to use them because they don’t prescribe them; I have to do it through the neurologist. I don’t know why that is; they’re, they’re not experimental, they’ve been around for many years. So, I don’t know whether it’s cost or whatever it is, but if it was something urgent, I would be able to get in touch. And when I started being a bit allergic and I was getting, I was getting, I still do get pink circles where they’ve been, but I was a bit alarmed, and then I know I can ask about it and some, and he will know, he, he told me exactly what to do.

Oh right.

And, and it’s much better than it was. But his take on it is that if I can possibly cope with them; I get some kind of migrainey headaches, which is supposed to be one of the side effects that could, could be happening, but his take is that if I, there’s nothing damaging about any of that and if I can cope on them, it’s the best thing for me. So, I’ve got a lot of motivation to carry on and, and live with it [laughs].

Is, and were there any other side effects of having those then?

Those, those are the only two that I’ve had, just these, these occasional; they’re not bad migraines, they’re just a slightly migrainey headache, and the stickiness [laughs] which is a bit better than it was [laughs].

It’s Rivastigmine. So that made a huge difference to my cognitive state and processing; I felt far more alert, clearer in my mind, recall seemed to be better. So that seemed to be good; unfortunately, it’s, I’m, I think the word I would use is plateaued now; so, I’m on the, that’s, I can’t have any more of that. And so, yeah, but that medication has certainly helped. And I’ve just started Dopamine, so, literally in the last couple of months.

So that’s something you’re sort of, what, what, still testing out to see whether you think, feel, feel it’s helping?

Yeah, yeah, that’s for the Parkinson’s side.

Yes, yes, OK. And did, were, did you have any, any problems with the medication at all; have you had any sort of noticeable side effects or anything?

The, the reason I’m laughing is it was a side effect that I had never even thought about and that was being allergic to the adhesive that is used on the patch, because it’s a patch; and I, when I first got the medication I got one, I got two packs but from different companies, and I put the first one on and after the first couple of days, you, you know, literally the, it, it, great big blister marks; and it was all right because you move it around your body so after a couple of days it went. And I happened to speak to the pharmacist when I went in and said, “Is there anything I can do?” And she said, “Well you can apply some emollient cream,” which I did use. She said, “But actually try one of the other patches from the other company,” and I did that and it, much better, much better. They, they, they’re; I got a little bit of a side effect of; I can tell; it has an advantage because it reminds that I don’t stick it there again, so I shall have to stick it there. So, in terms of side effects that, those are the only things that I’ve noticed with the Rivastigmine; so that’s been really, you know, really, really good.

That’s an annual series of memory tests and I have tests from a psychotherapist there each year and luckily, they’ve discovered that my memory’s actually improving which, yeah, that’s, that’s good news for me.

Absolutely.

And yeah, that’s, that’s the one a year testing that assesses the level I’m at as far as memory goes, and cognitive functioning.

And I think you said you were on?

Galantamine

Yeah?

Galantamine.

And you think that’s, has that helped your memory?

Well, I think my memory is better certainly than it was, so it must have had some positive effect, and I’ve not experienced any negatives ones so must be, must be working [laughs] and.

Yeah. So yeah, so it’s you, not only do you feel your memory’s a little bit better, it’s been measured as being a bit better?

It’s been measured as being, being a bit better; I mean to all intents and purposes I carry on life as if I haven’t got any memory problems, I’m able to function, you know, as much as I would like to do, in fact perhaps better than when I first retired, you know, sort of breathing a sigh of relief when I first reached retirement thinking I don’t need to cope with these things anymore; and perhaps I was a bit too complacent and a bit too lazy. But I’ve made much more effort over the past two years to concentrate; and all the good, all the stuff that’s recommended to help improve your cognitive functioning.