Fading from Memory

The latest medical alarm is that there is a large hot red swelling on one of dad's legs. The people at the day care centre were concerned enough to call Rachel about it. I took dad to the local medical centre and he has been put on a short course of antibiotics. I need to phone him twice a day to remind him to take them. I've glued the packet of pills to the wall above the telephone (and in view of the webcam) so I can tell him where to find them. Just another day in the lives of the wrinklies.

Today mum seemed drowsy, but definitely calmer and less highly-strung. I applied a little test to her:

'Mum,' I said, inclining my head towards dad briefly, 'has he been behaving himself?'

Normally this elicits rolling of the eyeballs, heavenward glances, and exasperated shaking of the head. In her eyes, dad or whoever this imposter really is, never behaves himself. Except that today she replied differently:

'Oh, yes,' she smiled. So perhaps the Risperidone is working. The Aricept, on the other hand, appears to be running out of puff. Neither mum nor dad are any better now than when we started with it a few months ago. But enough of the medical stuff...

When we were out this afternoon dad and I passed a barber's on the way to the supermarket.

'Ah, I need to get my hair cut,' said dad.

I did a quick mental comparison - which of these two is less time-consuming:

1. Dad and I walk to the ATM and the supermarket at dad's walking pace.
2. I put dad in the barber's chair and get his hair and beard trimmed while I walk to the ATM and supermarket at my walking pace.

No contest. Option two, it was. When I returned it looked like there were still a few minutes' work still to do on dad, so I asked one of the hairdressers what she could do for me in 5 minutes. A number 4 shearing was the result. I keep my hair short anyway, at a cost of $95 at a much-lauded salon (with glasses of Chardonnay and nubile head massages thrown in, of course), but today's cut, taking only about five minutes and costing $25, is not that different, just shorter. I look slightly more thuggish, but I come from a family of thugs anyway. I feel like rough velvet, and I rather like it. Dad's haircut was well received, too. The first thing he did when he came in through the door was ask mum what she thought of his newly trimmed beard. She gave it a stroke and said, 'lovely!' Now there's a change!

Dad actually looked quite urbane for a few minutes, until his hair started to get ruffled again. He has funny hair. It is white and tends to whirl up to a point in the middle of his head. When a friend of mine saw a picture of him once she rolled around on the floor laughing because, with his pointed beard and pointed head, he looked so much like a garden gnome. It was as if the hair was just waiting for the pointed cap to settle over it.

I laid out ham and cheese sandwiches and peaches in jelly for mum and dad, and sat with them as they ate. Mum seemed excited when a bus went past outside. Dad said:
'When we first moved here, there was a bus-stop right outside our gate. They've moved it down the road now.'
'I remember,' I said. 'There's been a few changes since then. There used to be a "Christmas tree" down there in the garden. Mum used to put tinsel on it at Christmas.'
'Where is it now?' asked dad. 'Have you got it?'
'No, it was a real tree, dad. I think it just died.'
'A real Christmas tree? Here?'
'Well, it wasn't actually a pine tree. It just had the right shape. It was conical, not conifer.'
Dad laughed at the deliberate word-play. Soon afterwards he was asking me why I wasn't eating.
'I'm going to eat at Greg's place later tonight.'
'It's a long time since we were up there,' he said. 'I don't think we ever had dinner up there.'
'Of course you did, dad.' I said. 'You've had more dinners up there than you've had hot dinners.'
He laughed again at this; partly at the absurdity, partly at the parody - 'than you've had hot dinners' was always one of dad's favourite comparative phrases. This engagement of dad's with not just the subject but also the style of the conversation, a style I rather enjoy, was satisfying for me.

Watching them eating, seeing mum relaxed, and joking with dad made this an enjoyable visit - unlike all the others I've made in the last few weeks.

Occasionally people write directly to me rather than leave public comments on the blog. I presume the reason for this is to ensure their privacy or a concern for mine, not wishing to publicly raise issues that I might not be comfortable dealing with. In order to cover both possibilities I shall not identify the correspondent of an email I received today, but shall deal with the issue they raise. The core of the email is as follows:

Michael, there must be a reason why the obvious solution of moving in with your parents hasn't emerged in your writing. Please forgive me if my suggestion is indelicate but have you considered this? And what would you consider to be an event that would trigger your parents' need for 24-hour home care? It is quite as possible to mistakenly eat a box of poison as it is to mistakenly eat a box of cat food. My father once tried to eat a tennis ball - same shape as an apple, same fit in his hand, same motion from hand to mouth. He had no concept of the rightness or wrongness of his actions.

First let me say that I am sure mum and dad would be delighted if I were to move in with them - until I started trying to take control that is, but that is another question. The question is what I think of the idea of moving in.

The reason that I have not considered moving in with my parents is that I am simply not prepared to make such a sacrifice. I cannot speak for my three siblings, but I suspect they have the same reasons.

If necessary, I could invent all kinds of justifications for my position, but the real reason is pure self-interest. I would hate to live in the same house as my parents, I have had experience of it. I'll explain why I would hate it, simply for the purposes of explanation rather than justification or self-defence.

• The house itself. It is everything I dislike: cluttered, kitsch, obstacle-laden, gloomy and high-maintenance.
• Dad's incessant chatter. I like solitude, quiet, peace and order. I do not even play music at home. Dad's repetition drives me mad after only an hour or two; it interrupts my thoughts until I am as confused as he is. I am infuriated by the trivial subject matter: the catechisms over whether to have a cup of tea, the long debates about whether it is hot or cold, the daily conference about when to turn on the lights and draw the curtains (and the insistence that these must be done simultaneously).
• The constant company. Again, my time alone is often the best part of my day. Having both parents follow me from room to room would bring me to breaking point very quickly.
• The early nights and early mornings. Having to tiptoe around the house for up to six hours each night, and having dad come into my room only three or four hours after I've gone to bed to ask whether I am awake - I can do without that kind of misalignment.
• The chaos. In my own place I know exactly where my toothbrush, my keys, my cutlery and my other belongings are. I don't like it when they get moved. I often leave projects (such as the cataloguing of the family photographs) spread out over a table for weeks. I could not continue to work this way at my parents' place.
• The lack of space. I would have to put the great part of my furniture, my books, perhaps even my clothes, into storage.
• The workload. I would have to assume responsibility for each meal, for the washing and cleaning. I do not want to do any more housework than I already do.
• The noise and temperature. I have at times compared my parents' place to hell. They have the TV turned up LOUD so that they can hear it, they then shout at each other simply to be heard over it. The heater is often roaring at full bore. Under these circumstances I cannot even think. At my place conditions are comparatively paradisical: I have trained myself to use neither heaters nor air conditioning. I simply adjust the ventilation and my clothing to the time of year. The advantages of this seem to be that I no longer catch colds in winter nor suffer insect infestations in summer (as their populations die out during the colder months).
• The daily travel. I often work at home but need to make regular appearances at my office. I walk there from my place. From my parents' place it is a 90-minute drive during rush-hour.
• Social taboos. I cannot see how I could continue my current social life under the inquisitive, conservative, and off-putting noses of my parents.

There are other reasons too, I suspect, but these are enough. I have to weigh them against the benefits: mum and dad being much happier with a third person to act as lightning rod for their disagreements, a mediator and a pacifier, an occasional conspirator (not matter how much a turncoat), an entertainer and an interlocutor; my pleasure at seeing the cats each day; the extra safety and general well-being of mum and dad; the certainty of getting my mail; the huge financial savings living with them would bring. I have done the equation, and I still don't want to live there.

The second part of the question is what change of circumstances might induce me to change my mind. Here I answer that I would never consider it, no matter how deranged mum and dad's lives had become. There will come a point in the transition from healthy person to unpredictable demented vegetable at which mum and dad (either one or both) will no longer be safe alone under any circumstances. At that point I will move to have them placed in a nursing home, pending whatever Greg and Rachel are prepared to do.

Until that point, we are riding our luck. Without putting too fine a point on it, we are playing the probabilities that mum and dad will be OK, that the autonomy they enjoy is sufficient to counterweight the extra risks they are running. We chose this rather than strap them down in a cotton-wool cocoon from which they are not allowed to move without a minder. Our approach is either a calculated assessment that the solution can often be worse than the problem, or a form of fatalism that is unwelcome in some cultures, notably America and increasingly Australia, and possibly others I do not know about, but is otherwise fairly normal. If our lack of total supervision somehow hastens our parents' deaths, I will not feel guilty. My goal is not to make them live as long as possible, no matter what. It is to - and here the logic admittedly gets a little fuzzy - optimise happiness, both theirs and ours. I think so far we are doing well enough. Of course, anything can change...

The email went on to say:

A word of warning, there is no pace, rhyme or reason to Alzheimer's. The decline can be fast, slow and everything in between. But it always gets more challenging, less predictable and very, very time consuming. It is also unbelievably expensive.

The New York Times had an article in Saturday's paper - "Elder-Care Costs Deplete Savings of a Generation" by Jane Gross. I highly recommend reading it. There are millions of families in the same boat. ... And I hope my suggestion is taken it the spirit in which it was offered - with an open heart.

Yes, it is taken in that spirit, and I hope my response is taken as an honest description of a not uncaring attitude. I read the abovementioned article. It is not a pretty picture.