Tuesday, August 11, 2009

Thoughts on "Quality of Life" & Managed Care

There is a phrase that haunts me in discussion about infirmity and death. "Quality of life" is invoked to justify abortion and assisted suicide. My father lost his ability to read and to walk. He had been athletic, and energetic. Study and a curiousity about the world seemed to be the core of how he defined himself. It shook me to the core of my being when he said in a matter of fact way that it would perhaps be better if he ended his life. The dramatic change in his personality after his stroke left me with questions about the nature of the soul and what benefit could be derived from suffering that so dramatically altered one's personality and intellect.

A fortuitous turn of circumstance found me at the threshold of a career change when my father passed away. I started working with retarded people. At the time of my father's death, my first assignment was respite care.

Respite care involves caring in the home for people who's family needs a break from the constant obligations of caring for someone who is totally dependent.

One of my early assignments was going on Yom Kippur to another neighbourhood to stay with a man who was profoundly retarded. During my briefing I was told that he was 32 years old with Downs Syndrome and had a mental age of about eleven months. My duties would include providing him with appropriate entertainment as well as feeding and changing him when needed.

I arrived at his home on a well manicured block at about 9:30 AM. His mother introduced me to Mordechai*. She showed me his diapers and his medications. She described his personality and summarised how to interpret his nonverbal communication. She thanked me for enabling her to attend synagogue. Although her husband often brought him to shul on Shabbos, Yom kippur prayers were far too long for his span of endurance.

Mordechai was dressed in gray sweat pants and a blue tee shirt upon which he wore a four cornered fringed garment. His beard and side curls were well groomed. He had some Fisher Price toys as well as some colourful story books. He was sitting in a chair rocking back and forth looking at a very colourful story book about the book of Esther. His simple smile looked as though it belonged to a happy toddler. Even though his build and beard were of the age of adulthood, his manner was childlike. He lived in an ordered world in which he was loved and cared for. He looked at home in the backdrop of a religious home. Though the volumes of the Talmud and its commentaries on the wall behind him were far beyond his ability to understand them, it was clear that they were a formative presence in his world.

During the time I was with him, I followed the laws of caring for a Koton and a Choleh. This meant that he was for all purposes a child and a sick person who was not allowed to fast. I did everything necessary to prepare food for him as well as to clean him when his diaper needed changing.

When I am with a client, I try to project myself into their cognitive limitations and peculiarities, to understand what they are able to see and how it affects them. Mordechai had a set of plastic blocks. I wanted to say something to him about Yom Kippur, to make it a day apart. The image flashed through my mind of that which is unseen moving that which is seen. I stacked his plastic blocks up and slapped the floor beside them. The vibrations of the floor made them fall. Mordechai laughed and clapped. Then I stacked the blocks up again and blew them over with my breath. Mordechai wanted me to do it again. I was thinking in image sequences when i was with him. We seemed to understand each other.

I squeezed my Yom Kippur prayers between the demands of caring for Mordechai. At one point, he took a knitted cap out of his toy box. He was staring at it intently, holding it up to the light, staring at its strings and fibers. One piece of yarn was becoming unraveled. He was unraveling it further and smiling. The yarn was thick. He unraveled it and smiled. I was watching him with it. The yarn seemed to fascinate him. He reminded me of when I was two and a half. My mother brought me to her friend's house. Her friend had multicoloured speckled linoleum. I was staring at the coloured specks, thinking of traffic lights and of digging my sweaty fingers into a bowl of jelly beans. The linoleum fascinated me. It made me think of riding in a car with my nose pressed to the window. It made me hungry for jelly beans.

Mordechai seemed to be in one of my speckled linoleum moments. I let him enjoy it.

One of my favourite painters is a painter, architect and philosopher named Friedenreich Hundertwasser. I keep a few of his artbooks in my room. Sometimes, late at night they supply me with speckeled linoleum moments, some of which I share with my children in lieu of a bedtime story. One of his famous quotations is as follows.

"The lines I trace with my feet walking to the museum are more important than the lines I find hanging on the walls."

For many years, this saying had a free floating resonance and the ring of truth. Despite this, I could think of no application for the words of Hundertwasser.

When I watched Mordechai, the words of Hundertwasser and the book of Ecclesiastes fused in my understanding of Mordechai's world.

I set myself to look at wisdom and at madness and folly. Then I perceived that wisdom is more profitable than folly, as light is more profitable than darkness: the wise man has eyes in his head, but the fool walks in the dark. Yet I saw also that one and the same fate overtakes them both. So I said to myself, "I too shall suffer the fate of the fool. To what purpose have I been wise? What is the profit of it? Even this", I said to myself, "is emptiness. The wise man is remembered no longer than the fool, for, as the passing days multiply, all will be forgotten. Alas, wise man and fool die the same death!"
Ecclesiastes 1:13

What, I wondered made my fondness for Hundertwasser any more lofty than speckled linoleum or pieces of yarn? What changes does a love for beauty create in the world? Mordechai could not express in words about what he saw. He could not produce any measurable economic output. But Mordechai had an elicitive power. How do you measure the caring emotions he brought out in those around him.

I was not in shul for the rabbi's sermon. Mordechai's father sounded the shofar for Mordechai and me when he came home. Mordechai clapped as he listened to the ram's horn. I responded with text from the High Holiday prayers that had been said in shul earlier.

Even though I missed the sermon, the words of Hundertwasser and King Solomon resonated with me through my time with Mordechai. Unable to speak and care for himself, Mordechai had spoken to me eloquently of life and its meaning. Thank you Mordechai.

*Names and other details have been changed for the sake of privacy. Sphere: Related Content

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