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Friday 22 December 2006

The Corrections

By Mike on Friday 22 December 2006, 15:11 - Reference

As this is Christmas it is an appropriate time to recommend a novel I have just finished: The Corrections by Jonathan Franzen. It is one long prologue to a family Christmas which is eagerly anticipated and dreaded in equal parts. The Christmas is both a resounding success and a complete failure, but I shall not give away the reasons for this.

The story concerns a family of adult children and their elderly parents, one of whom is demented, possibly both. I think anyone involved in looking after parents in decline will find much that is familiar in this story, although how it will be received is entirely a matter for the individual. A friend of mine told me she finished the book in tears, while sitting in a cafe, and was comforted by the waiter. I, on the other hand, thought the book was funny, tragi-comic perhaps, but memorable for some hilarious episodes (the hallucinations of the father, while on a pleasure cruise, stand out as one of the funniest).

Franzen has drawn some very perceptive characterisations of the elderly. He dwells on their anxious preoccupations, the discontinuities of their time, their peculiar juxtaposition of the banal with the surreal, their desperate attempts to keep things right when all seems to be going wrong, both inside and outside their bodies. He also deals with the disparities in how offspring can view the same parents, and how rapidly these views can get knocked around by experience. Franzen also faces up to the disgust and ridicule declining grandparents can engender in their grandchildren.

Apart from all the family insights, there was for me a special pleasure in reading this book. Much of it is set in Seminole Street, Chestnut Hill - 100 yards from where I once lived. The location, one of Philadelphia's wealthiest and most self-regarding suburbs, was crucial to the story, since it is a symbol for the one son for whom appearances and status are priorities. Appearances and status are some of the earliest casualties in dementia. His fate is therefore sealed.

The Corrections is also well-written, creative in its use of English, and full of arresting metaphors. I could have enjoyed it on this level alone.

I'd be interested in hearing from others who have read it - to learn whether it was seen as a tragedy or a comedy.

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Wednesday 20 December 2006

Christmas party

By Mike on Wednesday 20 December 2006, 14:48 - Journal

Early this morning I checked in on dad. He was up before 6:00 and all dressed for day care. I'd seen him going into the shower last night, too. The webcam is proving extremely useful.

I made a call to him at 9:00, reminding him not to go to day care at the usual time. Before I arrived at about 10:20 he had called me back twice to ask what the new arrangements were.

Mum was fast asleep and I didn't give much for my chances of getting her up and out for a party in half an hour, but we did manage it. Of the 40 minutes it took her to get ready, over 30 were spent sitting on the bed fiddling with underwear.

Although five minutes late, we were among the early ones. We were ushered into the nursing home adjacent to the day care centre - an anodyne, forbidding place of flourescent lighting, suspended panel ceilings, off-white palette, and characteristic odour. I didn't like it at all. The prospect of ending up in a place like that appalls me. I seriously would rather be dead. And that was before the festivities started.

Music was being strangled by a tinny portable stereo sitting on a table. Justifiably homicide, since it was all smaltzy ersatz muzak versions of Christmas standards. First item on the programme proper was a Christmas quiz. The quizmistress didn't understand half the questions, and mispronounced nearly all of them. One chap in the front row, porky and florid, kept making lewd suggestions to her. Dad jerked a foot towards him and leaned towards me.

'None of the blokes like him very much. Very uncouth.'

Quiz over, we all moved to the tables. I was not enjoying myself. Actually, it was an ordeal. Mum was still fairly composed, and dad was pretty much in his element, since he is familiar with nearly everyone there now. I was dreading the food. A picky eater at the best of times I was hoping that I wouldn't have to make excuses for not eating.

The fare was warm turkey, beef and ham slices, smothered in gravy, lightly roasted potato and pumpkin, processed peas, beans and carrots. A dollop of Cranberry sauce sat in a sea of gravy. I'm a vegetarian for a start. I don't mind cold food and I don't mind wet food, but I baulk at cold wet textures. I don't like gravy or Cranberry sauce. Pumpkin is edible as long as it is hot and salty. There was no salt on the table. Still, I was the first to finish. Some had barely started the random repositioning of food on the plate that seems to be a necessity in the later years.

Conversation was hard work, but I was more concerned with watching mum for signs of restlessness. She managed to eat all her lunch - quite an unusual feat for her. What she left, dad cleaned up anyway.

Next, we moved back to the lounge to listen to a latin quartet: marimba, accordion, guitar and singer. They managed passable versions of songs drawn from the repertoires of Glen Miller, Edith Piaf and Harry Bellafonte, notwithstanding arthritic guitar solos and toothless percussion. Only three or four of the audience fell asleep. The band redeemed themselves with quite a clever arrangement of Rodrigo's Aranjuez guitar concerto - surely one of the most achingly beautiful pieces of music ever written. While mum enjoyed the music she tapped her feet and kept the beat on the arm of her chair, but a few seconds later, when the band changed their tune, she might sit forward and start staring around with that 'what am I doing here?' expression. I could understand this. There were moments when I thought I was in a David Lynch movie, too. Soon, mum's restlessness got the upper hand and we had to beat a retreat.

Back home the house was cleaned (Alison was in today) and the lawn mowed (the lawnmower man made his monthly visit too). Cups of tea all round, and that, for 2006, was Christmas.

4 comments

Friday 8 December 2006

One-page summary

By Mike on Friday 8 December 2006, 21:51 - Reference

A few days ago I noticed a link to Dementianet - it had appeared among the Google-sponsored ads to the right hand side of this weblog. A brief investigation revealed it is run by Lundbeck, a pharmaceutical company. It is an interesting link, leading to all sorts of other pages I simply haven't yet had the time to investigate fully. However, after having a brief look around, I thought I'd add my story (with plug) to those already there. This is what I wrote:

Earlier this year our geriatrician diagnosed dad with Alzheimer's disease. Mum had been diagnosed with the same thing for about three years at that stage. They are both in their mid-eighties. Life with two parents with Alzheimer's has its particular challenges, but also elements of high comedy. While it can be maddeningly frustrating at times, it can also be quite hilarious, and I think it is essential to find time to laugh when you can. Funny or sad, I try to keep the rest of the family, scattered around the world, up to date with mum and dad's daily progress through my online journal at blog.fadingfrommemory.info

The primary problem of having two Alzheimer's sufferers under one roof is that it is often impossible to make things right for both of them. For example, my dad loves to have visitors so that he can rerun all his old stories, probably get someone to make some food for him, and get help with whatever his current preoccupation is. Mum, on the other hand, is easily overwhelmed if too many people are around, and can sometimes be reduced to tears, or even anger, under these circumstances. Dad has become more talkative as he's grown older. Mum has developed a form of dysphasia that makes her almost incomprehensible. This is a formula for disaster, since dad will constantly ask mum questions which she cannot answer properly. Dad then tells her he doesn't understand, rather unsympathetically, or probes deeper. The more he asks, the more mum gets frustrated at not being able to make herself understood. The result can sometimes be that mum will try to slap dad and tell him to 'shut up! shut up!'

Essentially, mum would be happier if she had different company. Dad would not. We cannot solve this dilemma.

The other problem is that when things go wrong, and this is often, of course, we don't know who has been involved. Just for example, the mail sometimes disappears. Sometimes it is dad who has tried to deal with it, got lost midway through the process, and absent-mindedly stuffed the paper into a drawer in his bedroom. Just as likely, mum fished the mail out of the letter box and walked around with it, taunting dad that she wasn't going to let him read it, because it was 'hers', and later hoarded it in her bedroom. Then again, mum sometimes tears it up without opening it. Try to find out what happened (so that you can attempt a solution to prevent it happening again) and you'll never get to the bottom of it.

My brother and sister and I look after mum and dad on a drop-in basis. We make at least two visits a week, sometimes four or five. We're fairly relaxed and have let standards of cleanliness and hygiene slip simply because to keep to the old standards would require far too much discipline and control, and as long as mum and dad are reasonably happy, despite the dirt and smells, we let them be.

Despite the huge volume of advice and warnings about dealing with Alzheimer's, we've found we need to come up with our own solutions much of the time; standard advice such as providing music, putting signs on things, etc, usually has unexpected and negative side effects. We've had to keep experimenting.
Our approach is to take each problem, such as not washing, or eating badly, one by one. We try a fix, if that doesn't work, we try another. Eventually, sometimes, we have to give up. We all know that in the long run nothing will help, nothing will work any more, and mum and dad will descend into complete oblivion - at roughly the same time we hope. But until that time we can bring our ingenuity to their problems and try to keep them in their own home, with their two cats, and surrounded by all their familiar old furniture and belongings.

one comment

Tuesday 14 November 2006

Dramatis personae

By Mike on Tuesday 14 November 2006, 13:13 - Reference

I thought it might be useful to list our various medical and social services personnel - for reference. I might come back and update this particular post as time goes by.

Dr Cranium – Geriatrician

Gentlemanly and popular. It was he who broke the news that dad had Alzheimer's disease.

Dr Mandible – Proctologist

Avuncular. Got the run around when dad complained of constipation which seemed to be nothing more than not eating.

Dr Femur – General Practitioner

Cheerful, well-liked by dad. Gets things done.

Dr Anvil – Vascular Surgeon

Has only ever uttered 16 words in his entire life (nine of which were 'no'). Respected by other doctors.

Dr Patella – General Practitioner

Cheerful, trusted by mum, but not apparently by the social services. Very happy to make house calls.

Dr Radius – Opthalmologist

Appears always to be in a bad mood. As a result of which may no longer be getting our business.

Dr Humerus – Psychogeriatrician

Young and considered something of a star by the social services. Next to impossible to contact.

Dr Sacrum – Dentist

Helpful when needed, though this appears to hardly ever be the case.

Dr Sternum – Opthalmologist

Has looked after mum OK. May get to deal with dad too.

Dr Ilium – Cardiologist

Assured but socially shy. Turned dad into a bionic man with a pacemaker.

Dr Tibia – Dermatologist

Quite elderly, but smoothe and ready to chat.

Lana – Case Manager

Cares about mum and dad, but seems unable to provide someone mum really trusts. Has lately seemed to be losing her composure.

Pauline – Careworker extraordinaire

Left work to look after her own family (and demented mother). Appears to have been irreplacable.

Gail – Careworker now also gone

Never quite filled Pauline's rather large shoes. Had trouble finding mum's soft spots.

Gail – Day Care Centre Manager

Tried perhaps too hard to get mum involved, but does a great job of looking after dad on Wednesdays. Brisk and old world in style.

Sophie – Aged Care Assessment Team

The person who decides whether mum and dad are in need of low care (they are) or high care (probably not yet). Extremely gentle in manner.

Diana – Aged Care Assessment Team

Says little, but says what matters. A person I can work with.

Nancy – Sydney Home Nursing Service

Bright and clear thinking. Someone I can work with.

Patrice – Sydney Home Nursing Service

Stubborn and self-important with flashes of a pleasant personality which she does her best to hide. Has made a bad impression on us from day one.

Alison – Careworker

Sneaks into the house while mum is being entertained elsewhere, and leaves it sparkling.

Carol – Careworker

Does the Friday evening meal for mum and dad. Seems great.

Jennifer – Careworker

Does the Monday evening meal for mum and dad. Also seems great.

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