I recently read an article in the January/February 2016 issue of Mother Jones titled My Right to Die by Kevin Drum (http://www.motherjones.com/politics/2016/01/assisted-suicide-legalization-california-kevin-drum).
I thought about the article again yesterday as I listened to news reports of the death of Pat Summitt from early onset dementia, ‘Alzheimer’s Type’. I never follow sports and did not know her name but soon learned more about this woman who impacted women’s basketball and sports. The tributes to her accomplishments were broadcast on every news channel. Her disease seemed so cruel for someone so vibrant and dynamic, but she left a legacy for many. Of course every disease is full of cruelties. Her diagnosis reminded me of the 2007 Lisa Genova novel Still Alice made into a 2014 film of the same name telling the story of early onset Alzheimer of its title character.
As I lay in bed last night I thought of my parents’ last years and their wishes. My father had Parkinson’s Disease. In his last year as the symptoms worsened, my mother needed 24-hour help. One day he said to me, “I’m a sick man. If you loved me, you would help me.” I did love him, but I could not give him the help he wanted. While I am comfortable making a decision of assisted suicide for myself, I could not make such a decision for someone else, even a parent who wanted to die. Months later he slipped into a coma at home and was hospitalized. He was released into a nursing home then. He had a living will; he wanted no feeding tube. The nursing home informed us they could not deprive him of sustenance.
I visited him the day before the feeding tube was to be inserted and told him that we were going against his wishes. This was his last time of lucidity with us, and he accepted my explanation of the reason we disobeyed him. I called my brother to tell him that he knew about the feeding tube and seemed clear-headed. By the time my brother visited in the afternoon, my father was uncommunicative. The feeding tube was inserted the next day, and my father’s hands were tied as he tried to pull out the tube. He knew that this was not what he wanted, but he was no longer in control. He died within two weeks.
The call came to me at work from the nurse. She said my father was dying from pneumonia and warned me he would probably be gone by the time we got there. I grabbed my purse and tasked my co-worker with calling my brother to tell him to go. I drove the couple of miles to my mother’s house to get her.
My father was already gone as my mother and I joined my brother in that small room. For a long time as I passed this nursing home, I would look up at the window of the room where he died and cry for the last weeks he spent there.
Ten years later it was my mother sitting in a wheelchair in those same nursing home rooms. She had lived happily for several years in an apartment at an assisted living facility where she played games and ate with new friends and listened to her friend Martha play on the grand piano in the lobby. Her memory faded in those years, but she knew her family. One day her hip replacement wore out and needed to be repaired. When the surgery was over, her memory had declined even more; and recovery required a stay at the same nursing home where my father had died. She sat in a wheelchair in the therapy room as they worked with her to get up and walk again. She simply could not remember the exercises once she left the therapy room though. She could not help with her own recovery, and therapy stopped. She never walked again, although she sometimes tried to get up from the chair. On one of those efforts she fell and broke a bone. Her dementia progressed until she no longer remembered us though she was able to fool us for a while as we chatted. Eventually she did not qualify to stay in the assisted living unit and moved to skilled nursing. Visiting became difficult as we became strangers and the conversations one-sided. She remembered her children, but we were not them. Perhaps we were still young in her mind. Did she think we had abandoned her?
She died some months later from an infection. I was happy when she was released from that wheelchair. I wished she had not spent her last year trapped by her body and mind; out-of-control of her own life.
My husband and I have living wills that we will try to follow for each other. Our children know what we want, but I fear that they will also not follow our wishes and be persuaded to do things we do not want out of guilt or an unreasonable belief in miracles. It is control of my life that I fear losing, though perhaps as I become older I may willingly cede control to others. It is not pain that I fear but the diseases that will rob me of my mind. I do not want my children to make the obligatory visits to a woman who does not remember them.
I remind my children what I want. I talk to them about assisted suicide. I want to be responsible to plan for my ending so they do not need to make decisions and feel guilt. I do not want medical professionals suggesting procedures to prolong life for a few months. I remember the doctor suggesting kidney dialysis to my mother-in-law when she had already told him no. He ignored her and talked about it again as if she did not know what she wanted.
Of course something may happen that will not allow me to be in control of my destiny and others will make my decisions. I hope they remember what I want.