Please note that my Father passed away about two weeks after I wrote this piece on January 5th/2014. Look for a memorial follow up to my Dad’s death in a few more weeks.
It took my Dad 60 minutes to finish a Happy Meal on Christmas Eve this year – December 2013. It was a couple of days after the worst ice storms Toronto has seen in years. Plenty of people are without power and still in the cold. Scott Peck was right. Life is difficult.
One hour is a long time for a few fries, a small root beer and a cheeseburger. In the end he never really finished the whole meal, but seemed pleased that he was able to eat at his own pace. There was a Christmas party starting in about 15 minutes at his residence. Health care workers, nurses and family members were bringing down the clients from other floors to the front room at the long-term facility. Wheelchairs were rolling in as guests were taking their place at the tables made up around the room. Poinsettias, eggnog and snacks would be served. The festive nature of the decorated room was dwarfed by those who weren’t well enough to notice, care or understand.
I’ve said it before that it’s hard to watch my Father struggle so much with the simple things. Parkinson’s is a brutal disease for everyone. Including the caregivers. It doens’t really make sense, but in some cases they don’t fair as well as those suffering from the disease. I’ve had many people that were close to me taken by Cancer and it is indeed a nasty unrelenting illness, but it’s usually over in a fairly short period of time. Messy and unforgiving it finally ends in due course. Neurological disorders however, slowly chip away at everything that’s human – day-by-day and over many years. My Dad was diagnosed about 30 years ago. That’s a crazy, long journey.
The disease affects pretty much everything that the body usually does by itself and without much apparent effort. This Christmas eve it happened to be swallowing. A severe case makes it very hard to eat anything. Choking, aspirating, fluid in the lungs are all possibilities now for my Dad. Pneumonia could be around the corner. His life is on the edge with every bite or so it would seem.
It’s so hard to watch. It always has been, but couple the physical with the mental dysfunction and I’m often on the edge of tears watching my disabled Dad. His quality of life is clearly in question. Not sure how he really spends his days anymore. It’s hard for him to read, play chess or work on a computer. Impossible actually. His often frozen fingers make it difficult to operate a converter and so TV can be a luxury. His life depends on others.
When Elizabeth said we should get him a Happy Meal for lunch I objected. I didn’t think it would be respectful to treat my Dad like a child. I was avoiding the notion that we’re dependent coming into the world and dependent while checking out. I shudder to think how he sometimes must be treated at the facility. Most of the care he receives is probably wonderful and I know I couldn’t do the job so many of those caregivers do, but it still makes me sad. I remember getting into quite a fight with a nurse who was mistreating my father. It all happened right in front of me. Remarkable really. The ego was astounding. It was as if my Dad didn’t exist. His problems were irrelevant or at best a nuisance to this care-less provider. The quality of this nurse’s care went about as far as the level of patience she could conjure up in the moment. My anger peaked as I shared my concern with a little more than an assertive tone. I was pissed. And yet pleased that my Father got to hear me defending his rights. My Mom was in the room as well. She was there for the verbal assault and didn’t say a word. It felt good to fight back for my parents. Don’t know that something like that will ever happen again. Not like that. How things have changed. I remember the time my Dad rescued me from drowning in Pointe Claire swimming pool in Montreal. I was six and he leaped over the railings to pull me out. Now I guess it’s my turn.
I think he’s ready to go. Time to shed his mortal coil. He has been for some time. He told me so quite a few years ago. I don’t really know what my Father thinks of the difference between assisted suicide and the right to die with dignity now and I probably never will. He wasn’t really that opinionated with us. That was my Mom’s job. But my guess is that he’s spent a fair bit of time thinking about it. Don’t even know if he would know who Jack Kevorkian is.
My Dad’s a former Anglican who had an evangelical conversion later in life once he arrived to Canada in the 50’s. He had been fighting in the Malay Communist conflict in Singapore and emigrated to Canada from England. It was a guerrilla like war where the infamous “Winning hearts and minds” phrase was coined. His born again experience was around the time he met my Mom. Taking your own life would be considered a moral problem for most of the people he has known over the past many years. Fairly conservative folk who for the most part preferred black and white solutions to grey troubling questions about issues that are better left un-talked about. No easy answers here it seems to me, but sometimes the lesser of two evils makes more sense. I grew up believing that divorce was an unforgivable sin. That’s what I was taught. My parents believed it too. Today I’m divorced and pretty sure they don’t think I’m floating down the river Styx without a life preserver. How things have changed.
Theory and theology, when they’re talked about in abstract terms, usually plays out on paper, from the lectern and the pulpit a whole lot different than it does when the issue meets you face to face. Life is difficult and choices can’t be made on a poor set of empirical particulars. Moral road maps don’t really exist for so many of our questions and concerns. What used to look easy doesn’t always look that way now. At least for me it doesn’t. What the law and sacred texts say are right and what is right, I believe, are not necessarily equitable. Knowing this and knowing that are very different things.
Dante, Virgil and Aquinas didn’t think too highly of those who committed violence against themselves – seventh circle, for the writer of the Divine Comedy, of only nine rings. That’s pretty close to the core. Bodies would be transformed into gnarled, thorny bushes. Fed upon by the Greek mythological winged creature called harpies. Not too pleasant and with Satan in the center. Seems a little extreme to me. Never mind all of the issues with projection of this kind, but think about the sociological, theological and philosophical presuppositions that colored his understanding of the after life. Too bad he didn’t get to marry Beatrice. Sounds to me like a frustrated Italian poet who wasn’t getting any.
Dying with dignity, euthanasia, and suicide are issues that can and do cross lines of all kinds. But each situation must be addressed on its own and for its own sake. By its own accord and on its own terms. Otherwise we run the risk of oversimplifying the extent to which we all can and do express our humanity in times of great need. A reductionism of the worst kind. Sweeping generalizations have no place in this moral territory.
I’d like to see my Dad’s pain and discomfort end and my Mother’s grief and stress fade. That I know for certain. Pretty sure he feels the same way. Not too sure about my Mom.
What I don’t know though is if he would ever now be able to make the decision required to end it all for good. It’s his and his alone to make.
DP – 01-2014