YEARS OF LIFE OR LIFE IN YEARS

Having made a major decision about my treatment, I’ve thought long and hard. And I’ve been remembering my father. A number of years back….

My father, his wife Vanessa and I are having lunch in a charming tea house in Oshawa, Ontario. It’s during one of my infrequent visits home and my father is having one of his bad days. The three of us are seated, waiting for our orders. Vanessa is tired, frustrated and stressed. She’s been my father’s caregiver for a long time. It’s a bone-grinding 24/7 job – because my father, stubbornly independent as always, is more than a handful and less than appreciative of her efforts.

 In the past few years, he’s suffered the consequences of a sub-arachnoid hemorrhage and a fall down cement steps that ultimately leads to a blood clot in his brain. He has dementia and something that the doctors say is not quite Parkinson’s disease – but close enough that he has the tremor, Parkinson’s mask and takes Parkinson’s medication. He is close to deaf and finds his hearing aid shrill and annoying. His short term memory is shot. Today, the mask is often in evidence – mouth open, blank stare, slow responses. 

I love my father very dearly. The perpetual contest of wills that marked my teenage years has passed and I am softened and saddened to see him so reduced. At the same time, I worry about Vanessa, who is only a few years older than me and has, for all intents and purposes lost her husband and become a full time nurse. I know that she is overwhelmed and teetering on the brink. 

There’s  a silence at the table. Talking to my Dad means screaming so that he can hear. Suddenly, he puts his hand over mine.

“What is it, Dad?” He smiles a little and says, very quietly,

“Nothing. I just wanted to touch you.

I put my other hand over his and it’s all I can do not to burst into tears.

He can’t be left alone because he’ll do some crazy thing like talking a neighbor into loaning him a chainsaw and then pruning a fruit tree nearly to death, while it’s in blossom. Door to door salesmen talk him into contracts to spray poison on the lawn or repave the driveway. He forgets to turn off burners.

Deafness and dementia combine to isolate him from everything. He isn’t taken seriously. People give up talking to him because he can barely hear. He puts up a fight and he doesn’t complain. He still paints landscapes, walks every day, reads the paper and forgets what he’s read a minute later. The thing is, he tries. He never quits trying. This is not Altzheimer’s. He is still in there.

I cannot begin to imagine the loneliness of it. And the thing I have always feared more than anything else is the loss of cognition. The indignity and the isolation of losing myself, losing my right to make my own decisions.  This is why I made the decision against whole brain radiation. While that decision may (or may not) shorten my years,  I cannot bring myself to volunteer for reduced mental capacity, memory loss and possible deafness. 

My father would never have volunteered for that, either.