WINNEMUCCA - While working with Alzheimer's victims and their families we discuss serious, worrisome challenges.
Even though caregivers may be exhausted and torn into a million pieces, their love and dedication give them strength, even when difficult decisions are faced.
I read an article in the New York Times about a daughter who had been arrested for granting her father's wish to let him die.
At 95, he had led a wonderful and adventurous life. Successful at work, he had also raised children who had reached lofty goals. With his wife deceased and most of his friends gone as well, failing health became overwhelming. No, it wasn't Alzheimer's disease, but it was equally horrific as side effects of diabetes wracked his body. Depression became overwhelming.
As his daughter prepared to leave after her daily visit, he whispered, "Please leave the morphine tablets at my bedside." She did, and then headed out the door. In the past they had talked about his right to die, but that was not the discussion of this day.
A short time later a caregiver arrived to find the gentleman unconscious, the pill bottle empty. Even with "Do not resuscitate" posted, she called an ambulance. He was rushed to the hospital and revived long enough to plead that his daughter not be held responsible. Then he quietly slipped away.
His daughter was arrested and charged with manslaughter. While the article indicated that she would probably receive probation and be required to perform public service, imagine the terror, pain, and humiliation she endured.
What would you do if a loved one made such a request of you? You might guess the intention, you might understand the nuanced appeal, or you might just dutifully obey. How much power should others have over our personal wishes in drastic and tragic situations?
The Right to Die is legal in Washington. Another gentleman had completed all required legalities to permit him to die when he chose to rather than encounter the strangulating end of Lou Gehrig's disease. "When the law passed, I recognized my salvation."
However the law also requires that the individual administer the lethal dose, something that is impossible for a victim of this paralyzing disease.
Alzheimer's is equally though differently paralyzing. I am not suggesting that caregivers wish to be rid of their loved one. Most often, I witness only enduring love and devoted care. Even when shattered and weary caregivers say, "We're doing all right." What might the victim say?
I watched my gentle mother and sister be consumed by this disease. Over time they melted away, from vibrant individuals to huddled masses. It did not change my love, but I will always wonder if this slow motion death would have been their desire. They died quietly at home, with no machines throbbing and medical personnel poking, but it was an ending that lasted many years and left lingering hurt.
Tough decisions are made every day by caregivers. Their patience as a question is repeated one hundred times or an argument erupts over every tiny action is amazing. Changing diapers, spooning baby food, and remaining alert 24-hours a day must be horrifying. What anguish accompanies this aching descent.
Then the end arrives and the full-time caregiver is suddenly alone and lonely. Quiet days, endless nights, memories both happy and sad fill the hours. Sometimes there is guilt, "Did I do enough?" At other times there is anger, "Why did this dreadful disease invade our domain?" Sometimes there is relief as the agony draws to a close.
During this time and long after is when good family, friends, and neighbors make such a difference. Stop by with a treat; suggest a trip to the store. Offer to run errands or rake leaves. Repeat as needed, for days and weeks, months and years as you revitalize a life.
The Alzheimer's Walk is scheduled for Saturday, Sept. 28, at the Sparks Marina. There is still plenty of time to sign up. You can create your own team or feel free to join mine: Love, Dignity, and Alzheimer's.
Emotions fill the day as you enjoy the camaraderie of others and also feel the pain of the death knell of this disease. It is a chance to share and learn while joining others in a worthy cause.
Your donations to the Northern Nevada Alzheimer's Association help with research, respite care, education, and guidance for victims and families in our area. Please plan to spend the day with us.
Gini Cunningham facilitates an Alzheimer's support group in Winnemucca. Contact her at gini.cunningham@sbcglobal.net.
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