March 01, 2008

The nature of Alzheimer's

I was looking for someone to relate to what I am going through with my mother, and I found it in this beautiful essay. From Ellen Pall in the New York Times:

WHEN my father was fairly well along into the dementia of Alzheimer's - not as far as he was to go, but four or five years in - he developed a taste for looking attentively at trees. At the time I was not aware that this is a common pleasure for Alzheimer's patients, some of whom are known to enter a Zenlike state of meditation before them.

In my ignorance I speculated as to what the allure of looking at trees might be for my father. All he could say about it, or would say, was, "Look," pointing out the window (or, in better weather, up from a chaise lounge) at the gently moving branches of an oak or maple. And repeat somewhat urgently, "Look!"

And I would look, sometimes standing and coming around to his side to please him, because he seemed to want me to share the exact perspective on the 30-foot pine outside his kitchen that had caught his attention. I would nod my agreement and wonder if perhaps, because he had grown up on the prairies of Canada, trees of this size still held a fascination for him.

I wondered if he was thinking of these mature trees, so much taller than when he had bought this house 35 years before, as symbolic of his own accomplishments in life, of his having come to patriarchy atop a hill of achievements.

He was in his early 80's when his memory started to go; by now he was heading fast toward 90. I suspected that when we were together, he thought a lot about his being my father; the knowledge that I was his daughter stayed with him almost to the end.

One time he gestured at a statue he owned of a parent - a tall, curving leaflike parent, cast in metal - sheltering a small leaflike metal child. He tried, I thought, to acknowledge the switch in caretaking that had come about between us, by pointing first from metal parent to metal child, then from metal child to metal parent, then from himself to me, until tears spilled out of both of our eyes.

So I thought that trees might seem like families to him, and that the tall, grown-up trees perhaps were fathers.

My father was a man of great intellect who devoted his life to scientific invention. Among other achievements, he founded a thriving company and was awarded the National Medal of Technology.

No one influenced me more than he did (unless it was the ghost of my mother, who died when I was 7). I tried to please him all my life. But we had been close only when I was a very little girl.

He liked little children. When my siblings and I were small, he would toss us up in the air, let us climb over and tickle him. Very young children diverted and cheered him, bringing out an otherwise dormant silly side. When I was quite tiny, he would have me sit on his back and give him "massages" whose only efficacious element, he later admitted, was the weight of my small body on his spine.

At bedtime he patted my middle - what we called tummy rubbles - and told me the continuing adventures of a very foolish traveling ostrich. After he learned to play the guitar, he would sing folk songs to me before I went to sleep: "The Riddle Song," "The Foggy, Foggy Dew," "All the Pretty Little Horses." During some part of my mother's long stays in the hospital, he occasionally let me sleep in his bed, whether because I asked to or because my warmth and company comforted him. None of this was even slightly sexual; it was only warm and loving and kind.

But with my mother's death - maybe even before, as its looming shadow crept inescapably over our little family - he started to draw away from me. Perhaps I reminded him too much of my mother.

By the time I was 10 or 11 (he had remarried quickly, when I was 8), formality had entered into our relationship, and I seemed no longer to have anything to offer him by way of cheer or ease. He was busier than ever anyhow, working on, among other things, the development of a blood filter that might have prolonged my mother's life. It would take more than 20 years of work to bring it to market.

All these years, he and I were not close. I desperately wished to be. But I saw him as cold and removed, uninterested in personal life. We shared a slightly whimsical sense of humor that occasionally lightened an hour or two between us, and he was certainly steady, fatherly, good and very generous to me in many ways. But I would never have said we were close.

Until he got Alzheimer's.

FEW friends came to visit my father once he began to fail. Innocent as Alzheimer's victims are, a stigma still attaches to this disease, to any kind of dementia. In the case of my high-achieving, cerebral father, those who knew him also turned their eyes from the spectacle of a gifted man's great fall.

People are said to die of "complications" of Alzheimer's, but "simplifications" might be closer to the truth. Watching my father's illness progress was watching him move inward to some secret, native core, past layer upon layer of socialization, education, religious training, life experience, physical skill, personal habit.

First he was forgetful, and when his children told him so (he had asked us to tell him; he didn't want to end as his father had: with Alzheimer's) he denied it. We hoped his forgetfulness was the result of stress: my stepmother had just died after a lengthy and miserable battle with Parkinson's.

But our father's memory did not improve. Instead, a new, crafty side of him emerged, shrewdly determined not to let show any sign that he was losing his wits. This was followed by a period when his forgetfulness would annoy him. He would sometimes strike his knee in irritation as yet another word or name eluded him, another whole concept. Sometimes he would laugh at these lapses. Once or twice he joked rather desperately, "I'm getting stupid."

Then there was a long period of paranoia. He feared that a child passing through his yard might be a target of enemy soldiers. (His own home now unfamiliar to him, he seemed to think he was in the Army.)

When the nurses and aides we eventually hired to stay with him tried to groom or feed him, he sometimes lashed out at them, confused as to why unfamiliar hands should take such liberties. He hid his watch, lest it be stolen. He went into someone else's house, thinking it was his own. He struck out angrily even at family members.

Then this period passed and, with the help of small doses of medication, he became more content, more compliant. When I visited him now, I would bring CD's for us to listen to. Cecilia Bartoli could move him to tears. A recording of a rhapsodic Georges Enesco composition was "the most beautiful music" he had ever heard. He beat his hands in time, conducting. Sometimes he hummed along.

MEANWHILE language deserted him. He spoke at length, but in words no one recognized, a gibberish that came to him with remarkable ease, as if he were Sid Caesar pretending to speak French. We knew he was telling a joke when his voice rose animatedly and his breathing quickened. We laughed when he laughed. Once in a long while, piercingly, he said something that made sense about his own condition.

"Is there any hope?" he asked me once.

Of course, of course.

It interested and touched me very much that to his end - once the angry phase was finished - he was courtly and affectionate toward his aides. Early on he had given up eating dinner alone at the end of the long, polished table in his dining room and gone to join the aide and housekeeper at the more convivial round table in the kitchen.

One of his last coherent remarks, spoken long after he ceased to be able to walk or even stand and support his own dwindling weight, was to offer to help a nursing aide perched on a chair to adjust the curtains over a pair of French doors. He always offered me half his food.

Sometimes he greeted me as if my appearance were the most wonderful surprise anyone could have imagined, as if we had met by chance in a desert on the other side of the world. In the gravityless reaches of his swirling, upside-down mind, he had become the kind, good little boy he must once have been on the prairies of Canada. And I was close to him now. At last I had the chance to help him - he needed me - and I helped him, and we were close. The symmetry of it: my childhood, 40 years of constraint, his childhood.

Now my father is dead, my mother is dead, and I am next in line. Now in the summer, when I see trees lighted by sun, moving in the wind, I am amazed at their beauty. Some of their leaves wink like coins, some wave like hands. Sometimes a whole branch sighs and bows, like a courtier. Look. Look!



"Remember, Ginger Rogers did everything Fred Astaire did, but backwards and in high heels. " ~ Faith Whittlesey

Reference
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