Breaking the News — Done and Survived

‘I don’t think we need to tell everyone,’ he said.

‘I think I have to tell the family,’ I said. ‘Your kids need to know. I feel a responsibility towards them.’

‘Well OK, but don’t make a big deal of it.’

‘I won’t have to. They already know something’s going on with you. It’s not going to come as any great surprise.’

‘But I don’t know how to explain it to them! What will I say?’

‘That’s all right; I can do it. We just need to say that you’ve been diagnosed with Alzheimer’s, it’s in the ‘mild to moderate’ stage, and you’re now on medication to stop it getting any worse and maybe even make it a bit better. Just the simple facts.’

So that’s what we did, contacting extended family, including some close friends who count as family, by email.

I also put it to him that we need to inform any medical people we deal with. He agreed, so I told the chiropractor when we had our session yesterday. Good move — he informed us that Vitamin B12 can help with this condition. I’ll have to double-check with our doctor that it won’t disrupt the carefully balanced cocktail of tablets which Dear Husband is already taking, but I imagine it will be fine.

DH himself suggested we should tell the writers’ group. When the time came, yesterday afternoon, I asked, ‘Shall I tell them or will you?’ He gave me the job, so I trotted out the same factual statement, in the form of: ‘There’s bad news and good news.’  To the good news I added the fact that the specialist, while advising, ‘Do what’s easy; do what you can’ in regard to writing, also strongly recommended that D H continue to attend the writers’ group. 

‘Oh yes!’ they said. ‘We love you, and we’d miss you if you didn’t.’

I must say, it is a relief to me to have things more out in the open, particularly in that group, which we attend weekly. DH is not obviously ga-ga or anything; to most his condition must seem like the normal mild forgetfulness of ageing. Only I, who live with him, experience all the Mother-and-Son* moments, either farcical or alarming. 

One group member who is a health professional has let me know privately that she is aware of what we’ve been coping with; her quiet understanding has meant much in recent months. Others didn’t really get it when I tried to suggest, discreetly, that DH might not be up to some of the writing they would like to see him do, such as completing an unfinished novel. And when I stepped in to do practical things for him such as opening a document on his laptop instead of leaving him to struggle fruitlessly, I felt (rightly or wrongly) that they thought I was being controlling and over-anxious. Now they can have more realistic expectations. 

Meanwhile he has gone back to using pen and paper, leaving the laptop at home. He actually wrote yesterday, producing a very good response to one of our exercises. This has not happened for quite some time; we got used to him saying, ‘Pass’ instead of reading anything out — because there wasn’t anything to read. Can this revival  be due to the new tablet already? Or is it because of the energy release in no longer withholding something?

*A popular Australian TV sitcom of the eighties and nineties, oft repeated, in which an adult son cares for his mother who suffers early dementia.

Diagnosis: Alzheimer's

We had our second visit to Dr K, the geriatric specialist, and now have a more specific diagnosis: Alzheimer’s (the most common form of dementia) in the ‘mild to moderate’ stage. Which pretty much confirms what we already thought. Dr K prescribed some medication that slows the progress of the disease; he said it will stop things getting worse, and they may even get somewhat better. In three months we go back so he can check how it’s working.

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.

Anxiety

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.)

At present

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.