Don’t Judge Books By Their Covers

I expect you’ve heard this before, or something very like it. In this case it’s plural; I recently encountered more than one book with a deceptive cover.

We went to the carers’ morning tea organised by the Community Nurse. Bringing the people we care for was optional. We all did. It was the first of these meetings; none of us knew each other (except that the CN had met us all).

We’d been looking forward to it so much that when the Darling Husband woke with extreme arthritic pain in his back, he was determined to get there anyway. At first, before the painkillers started to kick in, he could barely stand up, but he persevered and I helped as best I could. Luckily we got a park right outside the entrance to the restaurant, and there was room for him to get his wheely walker inside. There was even a ramp.

A few people were already there; more arrived soon after we did. Apart from the youthfully middle-aged CN, who has a vibrant ‘up’ personality which shows on her face, they were all old and looked more or less frail and doddering. Some had a slightly vacant look. I reckoned they’d be the carees. I was right that far.

‘I don’t know about this lot,’ I muttered to DH, and he gave a quick nod. But, oh well, it was an outing. We don’t have so many of them these days. And we didn’t have to come again.

CN made us name tags, and we began making conversation. ‘Where do you live?’ ‘What did you do before you retired?” It was obvious we were all beyond employment age. But then some people arrived who were not — although in fact they were retired anyway. There was a middle-aged woman caring for her mother, and an ex-dentist caring for his wife. We were all couples — married couples, except for the mother and daughter. Caring, it seems, is a one-on-one job.

One of the carees was a former school principal. He was a stocky, raw-boned bloke with a lot of gaps in his teeth. I thought he looked more like a manual labourer. He had plenty of interesting tales to tell about his teaching experiences. Clearly it had been his passion. His carer wife was a lively little lady who added some yarns of her own.

Another carer wife had been an exhibited artist, and missed it, but said she hadn’t picked up a brush for a year.

‘Too busy with him, you know?’ she murmured in my ear.

Yes,’ I said, equally quietly. ‘I do know.’ (I doubt that anyone who has not experienced it can have any idea how much time it all takes.)

She had a small painting with her and showed us. My guess is that CN urged her to bring it; the artist herself was a modest lady. It was a water colour of four draught horses pulling a plough, and it was wonderful, naturalistic rather than photographic, full of movement.

The dentist was excited to see this, and explained that his wife was an artist too, but in oils. She had been mainly a portrait painter and he enthused about the ‘wonderful likenesses’ she had done of all their family. Now, he explained, she did more ‘modern art’. I told them, truthfully, that I like abstracts best of all. His arm was around her with love and pride. A blonde woman with a lovely face, she appeared to be barely in her fifties. She didn’t talk much except to mention that her back was very sore with arthritis. I recounted how DH had been in such pain that morning that we weren’t sure of getting there, and we swapped back pain strategies. Observing the relative youth of this couple, I could imagine the heartbreak he must feel at what has befallen her. I know how much heartbreak I feel about DH, who is in his eighties.

CN told the group that DH and I are writers. Often I feel a little self-conscious admitting that I am that unusual animal, a poet. I found that in this group it felt perfectly natural. The dentist then told us that their daughter, who lives in one of the capital cities, is writing poetry and sharing it at performance venues. Yet another carer wife confessed that she is an avid reader. They drew DH out about the books he’s written, and is writing.

Other things came out too in the course of conversation. Two of the carer wives explained that their slimness was relatively new, due to stress. Others of us spoke about our own reactions to stress. All the carers were dealing with it one way and another; that was a given, no need to explain.

I launched into a story in answer to a question, and discovered that I’m a bore! They politely lost interest before the end. Dementia patients have short attention spans, and carers are focused on the requirements of the present moment. But it didn’t matter; no-one was even slightly judgmental, and I didn't feel bad. They just weren’t pretending. When you’re all in the same boat, there’s no need.

There were 12 of us in addition to CN. We enjoyed our coffee and cake and the view of the nearby river. By the time we had spent just over an hour together, we all swore to return next time and were happy to share phone numbers.

‘What an interesting bunch of people!’ we said to each other on the way home.

Disgruntlement

A friend at a social networking site invited her readers to update her on their lives, there at her blog. I wrote:

Adjusting to Spouse's Alzheimer's — learning not to reply in impatient tone of voice when answering same question 3rd time; suppressing the little chill that goes through me when he says something sorta surreal; not pursuing the matter when he simply can't give me an answer to a simple question; spending a lot of time talking on phone to providers of various help services, explaining the same details over again to each; noting how people (family and friends) who don't actually live with him don't begin to understand what it's really like; amassing pile of documents on the subject to read, given by each new professional person in turn, and wondering when I'll find time to read them ... well, you did ask.


Yes, I do get a bit pissed off at times!

On the other hand, it was nice to get a visit from the community nurse, who told us she is called in whenever anyone is diagnosed with dementia. It was immediately clear she has an excellent understanding of the problems.

He told her he didn't think he had Alzheimer's any more. I'm sure my eyes widened considerably at that news! She just said, cheerfully, 'You know, I see a lot of people who tell me that' and gave me a little nudge on the arm to stop me putting in my two cents' worth, as she added that usually the people who live with them have a better idea than anyone else.

She invited us to a series of monthly morning teas at a nice restaurant overlooking the river, which she has just organised, for carers — and, if desired, the people they care for — to get together. I jumped at the chance. She said it's good for people with dementia to get out socially — better than doing crossword puzzles and so forth, to keep their brains working. I had already been coming to that conclusion, from observation. And good for carers to meet others who understand what it's like. This regular outing begins tomorrow, and I'm looking forward to it in all sorts of ways.

Meanwhile, the arthritis in his spine got very painful and x-rays confirmed further deterioration. He has decided to ditch our chiropractor, convinced those treatments were no longer making a difference. Instead the doctor has prescribed a new painkiller which is helping noticeably. Almost immediately he started to wonder if he should be taking it! This after constant nagging about the doctor's appointments and the x-rays, when he was anxious to be rid of the pain and kept forgetting that the appointments were already scheduled.

I burst into tears and insisted he keep taking it.

'Don't get upset with me,' he begged.

Not with you, about you,' I said.

He put his arms around me. 'You mustn't worry. I'll be all right.'

Trouble is, the nurse explained to me that the medication he is now taking for his Alzheimers, while it inhibits the chemical that impedes the messages between brain cells, does not stop the cells from dying off. She suggested that he will get worse, albeit gradually.

I have an appointment to see the geriatric specialist myself — though not until late March. Alzheimer's was in my father's family. He had it, so did his uncle, his great-aunt and his youngest brother. I'd like to find out if I have any signs of it, and if so catch it as early as possible!

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.