Moments

'Live in the moment,' said a friend whose late husband had early Alzheimer's. I try, but am still getting used to how changeable the moments can be.

We had a lovely time over the xmas break, going out three days in a row to feast with friends. And we had Dear Husband's youngest (my Younger Stepson) here for a few days, visiting from interstate. I'm sure emotions affect the condition, and doctors mutter things to that effect too — anyway his mental state was very good while Younger Stepson was here.

Now we're on our own again and things have quietened down. We had our usual New Year's Eve in front of the telly, watching the Edinburgh Tattoo and the Sydney fireworks. He's not always in such an excellent state now as he was only a week ago during YS's visit. I have to keep a close eye on him in practical ways, e.g. rescuing things that are left in precarious positions (such as hearing aid sitting on top of the toilet cistern today). And the things he says can be quite surreal.

My Dad had Alzheimer's. One of the last times I saw him, he remarked on the beauty of a picture on the wall, a forest scene. Then he said things which indicated that in his mind he was now actually in that landscape, experiencing it as his physical reality. Something similar happened with DH this afternoon.

We were watching the movie 'We of the Never Never' based on the Australian classic about a young woman's pioneering life in outback Northern Territory in the early 20th Century, where she was the only white woman. It was a good movie and we loved it. During the ads I talked about our plan to make a treasure map of things we want to manifest in 2012.

'Will we have to stay here where we are now, so far away from everything?' he asked. I was mystified. We are quite close to town.

'I'm not sure how to answer that,' I said, after a long pause in which I failed to get my head around it.  'Could you run it by me again?' He obliged:

'Are we going to have to live where we are now, out in the wilderness, or can we stay in our home that we're in now?' The penny dropped. In some strange way, he thought we were the people in the movie. (I won't even go into the fact that he seemed to have himself in two places at once.) I reassured him we could stay in our unit that we love so much, and he was visibly relieved.

Next Day

This morning he is lucid, and has no problems with his short term memory. 

I said, as I took him his after-breakfast tablets, ‘I’m a mean, evil woman. I’m bringing you these a bit late.’

‘Yes,’ he agreed.‘Like bringing me my bedtime ones after midnight last night!’

It’s true, I did forget to give them to him immediately he went to bed, and by the time I remembered (well before midnight, I hasten to add!) he was asleep. He woke briefly to take them and went straight back to sleep; I’m surprised he recollected the incident at all. (Don’t worry, I can’t forget any dose for long; I have set up a marking off system on my calendar so that I can’t lose track of giving insulin once a day, taking blood sugar twice a day — staggering the times — plus the four daily doses of his various medications.)

‘You’re supposed to have a bad memory,’ I said. ‘Can’t I count on you to forget when I slip up?’

Both the specialist and our GP have mentioned that it’s common for Alzheimer’s patients to be ‘worse in the afternoon’. I prefer to think of it as ‘better in the mornings and evenings.’ It does seem to hold true for the most part, with occasional exceptions. So I try to adjust my life. I think, in view of that, it’s good that he often naps in the afternoon. I try to get a little nap myself then too, though I don’t seem to need as long a one as he does. We often have very good communication mornings and evenings.

A problem is that our internet access continues spasmodic during most days. It’s best late at night. So I quite often don’t go to bed when he does, though we both like that just-before-sleep cuddle and chat when I do. That’s another good reason for me to take a daytime nap. But I have to play it by ear, day by day. Sometimes we have afternoon appointments; sometimes I’m just too tired to get on the internet late at night; sometimes he would sleep most of the day if I let him, but I insist he gets up and even goes for a little walk.

On the other hand, if I’m not tired, I often cherish those night-times to myself when he’s asleep and for a little while I don’t have to be accountable. I can get cross if he wants to stay up late and talk or watch telly instead of going to bed. (Of necessity, my desk is in the living room, where of course the TV is too.) ’No, this is MY time,’ I say, and he is usually happy enough to  read instead.

As for saying weird things, with a kind of internal logic I’m not privy to, I’m learning not to press too hard for an explanation when he can’t give one. He thinks I am the one who’s weird, for not understanding what he’s on about; seems perfectly sensible to him! I’m learning to let go of having to understand him, though of course that depends on whether he needs practical help that he can’t elucidate — but then it’s usually easy enough to see what he’s after, such as getting his buttons done up the right way. For the rest, I more and more resort to saying, ‘Sorry dear, I can’t answer that,’ and changing the subject.

Mind you, we do have that old married couple syndrome of knowing what the other is going to say before they’ve finished saying it, which helps. If he starts, ‘I was reading that book by ... oh, I’ve forgotten her name’, it’s not hard to know what he’s been reading lately.

The treasure map, however, it's obvious I'll have to do myself. I've been able to get a little input from him but not much, and it's clear his mind can't cope with the physical creation of it. That's OK, I enjoy making things. There is also a nice reason for the lack of input. I've been hard pressed myself! Apart from age and health issues, visits from our far-flung children, and the publication of some of our writings, there is very little these days that we want or need. We have had full lives, and we have very few lacks or regrets.

OK, so we could use a nice little two-seater sofa, but we'll get it eventually and meanwhile the armchairs are comfortable enough.

OK, so I didn't get to Paris or Spain, but he did; just as he didn't get to Kakadu or Uluru but I did — and we both got to lots and lots of other places. And how lucky we are to live in the TV era, where we can also visit wonderful places from our living room, and see great concerts and art exhibitions too!  He is still very capable of enjoying or armchair travels and entertainments with me.

And so we muddle on, moment by moment.