I spoke with my father this week about assisted suicide.It was a tough conversation, but he wanted to have it.
Dad is ninety: legally blind, is going deaf, and inoperable knee problems have left him wheelchair bound. Internally, however, his heart, lungs, and digestive system are strong enough for him to live for many years.
His loss of autonomy has been dramatic, like falling off a cliff. At eighty-seven he could still see well enough to do his artwork, hear well enough to listen to recorded books, and walk well enough to live semi-independently with Mom in their own apartment. A series of severe falls and Mom’s brief hospitalization for digestive issues and congenital heart failure ended that.
Two months ago they left behind ninety percent of their remaining possessions and moved into two non-adjoining “assisted living” rooms—essentially hospital rooms. It’s a top-of-the-line facility; my Dad planned well when they decided on a retirement home.
“Except for being with your Mom,” Dad says, “I can’t do anything that matters to me anymore. I can’t paint, I can’t listen to my books, I can’t take a walk. I sit in the dark with constant ringing in my ears, and all I can do is hold Mother’s hand.”
I have to shout for us to hold this most personal conversation, and that is deeply humiliating for this intensely private man.
His voice quavers, his eyes fill with tears. “If your Mother passes before me,” he says, “I want to be able to go with her.”
Mom will likely precede her husband. While she can still see, hear, and even walk, her internal medical condition is rapidly deteriorating. After sixty-eight years of marriage, they have become the two contrasting halves of a whole, healthy person. My brother and I refer to them as a single soul trapped in two separate bodies. They share a firm conviction that they will be reunited, healthy in all ways, in the afterlife.
They have “no resuscitation” orders, but in their respective states, that’s as much control over their own deaths as the law allows. The scenario that haunts my Dad is one in which Mom dies, and he is left alone in that silent darkness, in a body that might continue functioning for years.
He loves his children and his grandchildren, but in the twilight we are all becoming, increasingly, abstractions to him. Reality is now down to that twelve by twelve room and holding his wife’s hand. When that hand is gone, so will be his final reason for sticking around.
In Delaware, if the General Assembly passes and Governor Carney signs HB 160 (The End of Life Options Bill), people like my Dad will retain control over their own lives. There’s more than dignity or physical pain at stake here; it’s whether we insist that the State respect the rights of the powerless to make their own decisions once we have ensured that they’re in their right minds and not being pressured by families, doctors, or health insurance companies.
I don’t want Dad to die. But if that time comes I want him to do so with my brother and me at his side, holding him as he slips away of his own volition. He won’t have that choice however because he lives in the wrong state. But, your relatives and neighbors in Delaware can be afforded that final measure of dignity and personal freedom if HB 160 becomes law. Please let your legislators and Governor Carney know that you support it.
NOTE: Steve Newton wrote this and submitted it to the News Journal for their editorial page. It wasn’t printed, so he posted this to his Facebook page. This is reprinted with the author’s generous permission.
Thank you Steve for this post. One of my parent’s fears is reaching your parent’s age either without sound mind (i.e. Dementia and Alzheimers, which is in our family) or otherwise physically incapacitated, like your parents.
I support 160 as a half step to where we need to be. As I read it, 160 won’t help your dad, as he doesn’t have a terminal condition. But I am no purist, so I say pass it and let’s keep the conversation and debate going.
My Dad died in December. My Mom and I were with him when he passed. It was so difficult, but I will never regret being there. His health had been deteriorating for a while and he stated he did not want to linger in this state and never wanted to be hooked up to any machines. We had been worrying about this situation. We knew his wishes, but also knew that what he wanted was illegal. Fortunately, we didn’t have to face this dilemma. But we discussed it. We worried over it, and deeply resented that the government, yet again, was inserting themselves into a deeply personal decision.
Great article, Steve. Thank you.
Thank you for allowing us to post this, Steve. HB 160 is an important step for families that have had the conversations to understand what “Quality of Life” means for their elders or relatives that are very sick. It is vital for the government to get out of the way of families who are honoring (with the supervision of a physician) the final wishes of their loved ones.
I certainly support the bill, it’s your life and you should be able to end it as you please. Unlike those mentioned I live with dementia every day as my wife and mom have it, theirs is a life not worth the living.