Saturday, 7 January 2012


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.


Sue and Danny O'Mullan said...

Your post is overwhelmingly poignant to me. My son - he lives the life simular but not exact. It is painful to see someone keep trying daily but yet not aware of what is. My son is my life, I am his 24/7 caretaker (will be 18 years to the day tomorrow). I appreciate your honesty in your post with resolve to your own decision. A decision that you made to avoid a repeated history is so respected by me as you will keep your dignity intact. It is hard even in today's world to keep my son's dignity intact - it is a continual struggle. This struggle that I have gone to court over b/c as this world stands today, dignity with individuals who cognitive levels have been compromised is not a right - it is to be fought for. My humple opinion, dignity is a human right - not one to be fought over. I appreciate you.

Howpublic said...

Sue (or Danny)...My heart breaks for you and your son. The world has little patience to offer people who are struggling with these kind of difficulties - and in my estimation, caregivers have the most difficult lonely job in the world. I wish you the strength you need and hope for you to be surrounded by kind & understanding friends.

Cynthia Newcomer Daniel said...

I'm glad that you will be you until the end. I would have made the same decision - without my mind, I would already be gone.

Sue and Danny - I honor you for what you are doing for your son. It's very hard, but he is lucky to have you.

Marsha Wiest-Hines said...

(o) Just a stone, to let you know I read and appreciate.

NEDbeads said...

(o) A stone from me, too. But know I respect your decision completely, as well.

Anonymous said...

I cannot say that I can completely understand. But this makes so much sense, darling. You are in my thoughts, and prayers (to the snake-headed, coyote-whiskered powers).

I love you, Coyo