Togetherness - Letters to the Editor

Townsend Letter for Doctors and Patients,  July, 2002  

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Editor:

For six years I have cared for my wife who was diagnosed with Alzheimer's. Some little success has been achieved by weaning her off pharmaceutical, doctor-prescribed drugs and substituting natural products.

However, my report on that subject did not go down very well at Alzheimer's Association (Western Australia), whose Medical Director abhors herbals, the people who sell them, and the people who buy them.

So you may well imagine my delight on seeing your address in the recently arrived February 2001 issue of Telicom, The Journal of the International Society for Philosophical Enquiry, of which I am a member.

Could you please send me a sample copy of your newsletter. Please publish Togetherness if you wish.

Togetherness

by D.H.R. Greypower, [C]1999

"Where is my mother?" asks Betty. She had visited her mother (on her death-bed) over 40 years ago, accompanied by her three young daughters; but that does not stop her asking the same or similar questions a dozen times a day, and more.

"Where is my mother?" asks Betty. Her husband Doug wonders: Is it code for "Where are my daughters?" The daughters had gone their own separate ways long ago.

Dementing is part Lamenting, a muted cry for compassion unlikely to be heeded in an ugly world, a veiled expression of grief for times past, the signal for retreat into the last bastion, the inscrutable inner self.

There are other aspects to Dementia, especially to the senses of a Caregiver. "The smell of Iris' mother's flat, when she was daft and elderly, was appalling.... The ghost of that smell comes now from Iris, a haunting of mortality."

So wrote John Bayley in "Elegy to Iris," tribute to his wife, Oxford philosopher and novelist Iris (Jean) Murdoch (1919-1999), who died of Alzheimer's, nursed nearly to the end by her devoted husband.

Bayley focussed on the idyllic, their honeymoon of a life, touching briefly on the burdensome and the smelly, and never recounting any remedial action for the distressing, seemingly irreversible train of events.

Disturbed by Iris' compulsive watering of pot plants, and that ghost of an odor, Bayley "went suddenly berserk -- shouting, accusing, threatening." At times like that everyone proffers stale advice: "Caregivers need Respite" but never volunteer to step into the breach.

Just what can be done for Alzheimers, those victims of society's misdeeds and injustices? And for their Carers? Should caree and caregivers be considered separately? And segregated occasionally? Or should they be considered as a single package, an indissoluble union? The medical profession, inclined to dissection, would divide and rule institutionally. On the other hand, the Book of Common Prayer advocates togetherness: Those whom God hath joined together let no man put asunder.

The wellness of Betty had deteriorated by 1994, if not earlier. She insisted that persons unknown, some young, some older, assembled in the front porch to deal in drugs. She heard them, she saw them, she feared them; and she pleaded with Doug not to risk confronting them. When he did venture outside, to find no-one in the vicinity, Betty saw them hide in the bushes or jump over the garden wall.

In response to continual imprecations, Doug took Betty to Claremont Police Station. She reported her sightings; and it was arranged for Night Patrol to pass the house and beam their light through the front porch, in the wee hours.

The wee hours took on another connotation with the onset of incontinence. Responsibility for damp stains on the bed occupied by the offender were vehemently denied; but mounting evidence eventually was too strong to disclaim.

Meantime Betty lost her sense of smell, some hair fell out, and her jaws chewed continuously on an empty mouth whilst Doug became tense and explosive on Betty's failure to complete sentences. She would start speaking and leave her thoughts hanging, forgotten, despite prompting, despite exploring possible allusions. Yet, on one memorable occasion, Betty found her tongue, voicing a long tirade against her husband. Thus occurred in close proximity a paradoxical association of mutually exclusive traits in the one person: speechlessness and vituperation.

Doug washed up, vacuumed, laundered. Betty, becoming hesitant and uncertain in the kitchen, asked him to prepare the meals. He also facilitated her ablutions, toiletting and dressing; which brought to mind an expression of his widowed mother that she had to be "Man and woman and all." That was 70 years ago.

Particularly onerous was assistance demanded during the night to help Betty out of bed, go to the toilet, and return to bed, five-six-seven times a night, eleven times counted during the most trying period, but he daren't refuse lest more severe consequences eventuate.

Broken sleep wears one down. "You must have respite," they said, which is euphemism for "Institutionalize the Caree." "Let the professionals take over" -- as though they would care more.

Role reversal was not a patch on this. Doug had taken on a job with a 30-hour-day specification. The situation called for good housekeeping with no frills, the careful husbanding of strength and resources, a simple lifestyle based on minimal effort.