Meanwhile we have now had visits from the Aged Care Assessment team, an Occupational Therapist, Community Options (for a second time, following up on the first), Tweed Respite Care, and while we were out yesterday there was a phone call from a Community Nurse. So it’s all under way, but the wheels turn slowly, and probably nothing will actually happen until after xmas. Which is fine by us, as we’ll be happily busy with xmas visitors and socialising.
Dr K gave us some documents about the condition, the medication, what resources are available (most of which we already know) and so on. He read out to us a list (‘These would be a recipe for a happy marriage even if you didn’t have Azheimer’s,’ he said):
THE 10 ABSOLUTES OF CAREGIVING FOR ALZHEIMER’S PATIENTS
never ARGUE, instead, AGREE.
never REASON, instead, DIVERT.
never SHAME, instead, DISTRACT.
never LECTURE, instead, REASSURE.
never say, “REMEMBER”, instead, REMINISCE.
never say, “I TOLD YOU”, instead, REPEAT.
never say, “YOU CAN’T”, instead, say, “DO WHAT YOU CAN.”
never COMMAND OR DEMAND, instead, ASK or MODEL.
never CONDESCEND, instead, ENCOURAGE and PRAISE.
never FORCE, instead, REINFORCE.
We had a bit of a giggle as soon as we were alone. We’ve always been able to laugh at ourselves and our interactions. (Now, THAT, if you like, is a big help to a happy marriage.)
‘I do all the things on that list that I shouldn’t,’ I said.
‘Yes,’ he said, ‘I noticed.’ And we giggled some more.
But then we had a look at the written version and agreed that I don’t shame, command, demand, condescend or force. The others ... hmmm. But now that I have a list of what to do and what not to do, it will be simpler. There are times when it’s a wonderful thing to be given instructions.
Some possible symptoms, such as aggressiveness, he simply doesn’t have. He can get a bit frustrated at times and therefore snappy — so can I — but that’s all. Sometimes, though, he does get anxious. One thing the literature mentions in this connection is the need for a familiar environment.
A couple of mornings ago, when we awoke, he told me that he’d had a scary experience in the night, when some strange men knocked on the door and informed him: ‘We’ve come to shift you!’ They were big blokes, he said. He refused and called the police, but the police said, ‘You have to go.’ He didn’t remember how he managed to avoid it, but was relieved to find we were still here and not in some strange new abode. When I said it must have been a dream, he understood that, but for some time kept speaking of it — with horror — as if it had really happened.
That day I had said, in my frustration with our poor internet access, ‘This is ridiculous; we’ll just have to move house.’ Big mistake, obviously. I won’t be saying that again!
(In truth, neither of us wants to move from here. The cats always demand breakfast at 5am. In future I’ll accommodate them, and use the internet in the early mornings when no-one else is overloading the network. It’ll work if I get to bed at a decent hour.)
He has very good days. Many people don’t pick up his condition in conversing with him; if anything, would probably just think him mildly forgetful as with natural ageing.
His worst frustration is the cognitive memory loss: the need for help with practical things such as computer operations, which he used to know perfectly well. And if he makes a cup of coffee, he’s liable to try and brew it in the cup rather than a plunger. I’ve discreetly taken over most of the practical tasks.
It does bother him that he can’t really organise a piece of writing any more. Oftentimes he deludes himself that he is writing every day. He’s not! At best he’s puddling about and messing up stuff already written. (Don’t worry; I have copies!) He was clear about it, though, when we saw the specialist, and took the opportunity to ask what he should do about it. Dr K said, ‘Do what you can. Do what’s easy for you.’ He added, ‘It’s good to keep up activities and interests like that, which stimulate your mind.’ I’m glad of this clarification myself — it confirms me in continuing to take him to the writers’ group. He seldom does any actual writing there now but can still enjoy the discussions, and his contributions are valued.