Fading from Memory

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Thursday 18 January 2007

How do you feel?

So, how do you feel after your mother has hit you on the head with a trash can?

Received wisdom says you might feel angry, affronted, abused, shocked, surprised, frightened, furious, perhaps even sympathetic. In my case, it is none of the above.

I felt angry at the time, but more because mum was not complying with my idea of how to deal with her cut finger than because she'd clocked me one. Today, having slept on it, I feel two quite different emotions, neither of which is particularly 'politically correct': amusement and boredom.

I'm amused because I can appreciated the farcical qualities of the scenario in which a frail old woman attacks a six foot three man and gets away with it. I'm amused at the schadenfreude inherent in anyone getting bopped on the head with a large and rather resonant plastic bin. But I'm bored with having to deal with this kind of nonsense. I'm bored with parents that can no longer offer anything in the way of mental stimulation - unless it is seen as some kind of test of my social ingenuity. I'm bored with the repetition. I've lost interest in being called on to deal with problems that should never happen, I cannot fix, are quickly forgotten, and sometimes don't even exist.  All of our lives, mum's, dad's and mine are surely meant to be about more than this?

It is odd that the caregiver literature only rarely deals with the funny side of dementia, and never deals with the boredom. I've seen talk of 'caregiver burnout' but that is something quite distinct from the boredom. I've realised just recently that the highly constructive and exploratory attitude I originally had towards my parents' dementia has been replaced by a more pedestrian line in dutiful resignation. I wonder how common this is.

Sunday 14 January 2007

Blessing in disguise

This afternoon I was with a friend who noticed that I was not taking calls to my mobile. Her curiosity was aroused. The next time the phone rang and I ignored it she made a point of asking: 'Aren't you going to answer that?'
'No, it's just my father again.'
She paused for a minute and then, with palpable wistfulness, said: 'My father never calls me.'

It made clear to me the peculiar relationship we have with our parents - peculiar in the sense of individual, particular, specific. I am now nettled by the continuous stream of calls I get every day from dad, each of them having two distinct parts: pretext (such as his need for food, money or medical attention) and purpose (discovering when I am next going to visit). It may not always be so. Although I cannot, at present, imagine feeling abandoned and neglected as a result of not hearing from my father, I can appreciate that there are many people who do.

And who knows, it is possible that when my father finally forgets how to use the phone, and cannot remember any of his family - when everything goes dark - I may look back at this twilight-time of communicativeness with some kind of nostalgia.

Saturday 13 January 2007

History is bunk

If you want to get our parents animated, it is pretty easy: show mum some children, and bring up the war with dad. It couldn't be simpler.

When we were little we used to love hearing dad's war stories. but after the fiftieth telling we began to lose interest. More recently, with a better grasp of history, a deeper understanding of just why the war has such enduring importance for dad, and a curiosity about family genealogy, my interest has returned. In particular, over the last few months I have been helping to reconstruct dad's torpedoing story, using the Internet to find several new sources, all supplying pieces of a jigsaw that never quite fits. People's memories become distorted, documents contain errors, and ambiguities are a constant in any form of research. Dad has really enjoyed this process of rediscovery and the sifting through of evidence. He has been constantly asking me if I have uncovered anything new, or heard from the contacts I've made in pursuit of the story. There has been a nice congruence of interests - and we have both got something out of it.

The trouble is, or rather, the troubles are, that dad is an unreliable and defensive witness. The unreliability is something I think I can handle. If I cannot get a straight answer to a question, or I get one I strongly suspect is wrong, I simply ask the question again a few days later. Some of what dad tells me leads to new information, some of it doesn't.

It is his defensiveness that makes things difficult. I called dad today to ask some very specific questions, questions that were intended to elicit details which would tell me where dad had been during the torpedoing. Here are some examples:
  • Did you see your lifeboat being launched? (if he had answered 'yes' I would then have asked if one of the davits had failed)
  • Did the men in your lifeboat jerry rig a sail out of two oars and a tarpaulin?
  • Did some men in your lifeboat have no boots?
He gave vague answers to all these questions, and then rambled off into irrelevance, material he has already passed over dozens of times. He is pathologically incapable of simply saying 'I don't know' or 'I cannot remember'. I kept on having to ask him to stop rambling, listen to the question, stop guessing. He didn't like this. He grew defensive. 'Is this important?' he asked. 'No, of course it isn't important, dad, I'm just interested. And I thought you were, too.'

I had to give up in the end. Researching his wartime experience seems to have become just another of those activities that works for a while and then fails to deliver any benefit. I've been getting satisfaction out of this research, but I am a bit stung by the absence of dad's gratitude. It has really turned me off the whole thing.

Tuesday 2 January 2007

Sacrifices

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.

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