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To Diagnose Or Not To Diagnose…

“The stigma associated with Alzheimer’s disease has arisen from at least three sources in American society: (1) the lack of understanding and fear that persons experiencing forgetfulness and their family members may have when encountering symptoms of Alzheimer’s disease; (2) emphasizing the negative consequences of the disease to gain political support for policy change; and (3) scientific reductionism wherein the person is reduced to sets of pathological behavioral and biological signs and symptoms. This article is a plea for a change in the way the condition commonly known as Alzheimer’s disease is both publicly and professionally understood in our society.” (Nader Robert Shabahangi, Geoffrey Faustman, Julie N. Thai, Patrick Fox, 2002).

Allow me to emphasise three things: lack of understanding, fear, and scientific reductionism. We have stumbled into a world where forgetfulness has become so medicalised that we can see nothing else than what we think are “symptoms of the disease”. Shabahangi et al (2002) quote Jonathan Franzen in describing his father’s diagnosis – the quote is so poignant that I want to share it verbatim:

“I can see my reluctance to apply the term Alzheimer’s to my father as a way of protecting the specificity of Earl Franzen from the generality of a nameable condition. Conditions have symptoms; symptoms point to the organic basis of everything we are. They point to the brain as meat. And, where I ought to recognize that, yes, the brain is meat, I seem instead to maintain a blind spot across which I then interpolate stories that emphasize the more soul-like aspects of the self.” (Franzen, 2002)

For years I have been pondering the “right” to a diagnosis and the “benefits” of an early diagnosis. I have written articles about it and have argued the merits of getting a diagnosis. Until it came very close to my own heart, and suddenly I am not sure if it is the right thing to do… For most people that I know, a diagnosis of dementia is a terrible life sentence. A sentence of being reduced to chemical brain functioning that purportedly will need medication in order to stabilize moods and take away some of the confusion. “Biomedicine seeks symptom removal or disease cure as primary goals” (p. 46).

What would happen if we stop labelling forgetfulness as a disease? If we can return to this state of being in the world as just another way of living our Elderliness, with soulfulness.

My maternal Grandfather, Oupa Moos, had what would have been labelled as Parkinson-related dementia. Oupa Moos was my role model of what a Christian would be – he worked hard every day of his life except on Sundays when he went to church, the whole family of seven children in tow. (He was always a few bars behind the hymn singing, which caused the grandchildren endless ts of giggles.) A forester, he knew the Knysna forest like the palm of his hand and could name elephants like they were his friends. His wife, Ouma Bettie, had the most wonderful sense of humour. When his right hand started shaking uncontrollably, she simply took Oupa outside, put the hosepipe in his hand and let him water the garden with his shaky hand. Worked a charm.

Oupa Moos and Ouma Bettie lived across the road from us. Ouma used to love playing the fool with Oupa, who did some really silly things. One day when a young boy on a bicycle wanted to sell him some onion plants – Oupa said his wallet was at home. Jokingly the young boy said that he will give Oupa a lift on the crossbar of his bicycle – Oupa thought it a great idea. Ouma could not believe her eyes when the poor young boy came riding down the road with Oupa sitting sidesaddle on the crossbar in front of the young boy.

Often times Oupa would not recognise Ouma when she walked past him whilst working in the eld where he grew vegetables next to our house. She would stop and ask him if he knew where the Stroebels lived. Oupa would launch into a long explanation about where they lived, and where we lived, in minute detail. Ouma thought this was hysterically funny, and let him talk for a long time before she could no longer contain her laughter. When Oupa eventually realised he was talking to his wife, they would both giggle like schoolchildren at his silliness.

Oupa Moos was very forgetful. Yet, he was perfectly content to be amongst his family. He needed help with his activities of daily living which we all supported him with. At times he had hallucinations – particularly around elephants in his room. He would wake Ouma up at night asking her if she would please take the elephants outside. Ouma very patiently asked him where the elephant was, and guided it outside. Oupas always sat at the head of the table and always said graze before and thanks after the meal. He became very quiet, and I often just sat with him. I knew how much he loved me when I looked into his eyes.

None of us ever thought of this kind of man as being “demented”. Oupa was just old and forgetful. We loved him more and more in this gentle last phase of his life. He taught us so much about being patient and forgiving, and mostly about being at peace with the world.

In all the years that I lived very close to Oupa Moos, I never heard him say a bad word about another human being. He grew more and more kind in his forgetfulness. Today, looking back, I am eternally grateful that Oupa was not labelled with a disease. He taught me that the final phrase of his life poem is the closing sentence framing a powerful story of love and kindness, lived out in serene forgetfulness.

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