58 year old Kelly Bone, with early onset Alzheimer's, discusses her plans to go to…
By Logan Jenkins, Union Tribune, Aug 5, 2014. And Response by Faye Girsh, Ed.D., President of the Hemlock Society of San Diego
The first column I ever wrote for money was about my grandmother slipping away in the back bedroom of my family’s Coronado home.
The Iranian hostage crisis ruled the news. And I was learning a scary word:
“My grandmother is not going to die right away,” my San Diego Union op-ed piece began.
“She’s 86, but her constitution has been as tough as the El Centro landscape she was raised on. Lately she has been retreating into herself. At times she doesn’t seem to hear at all.”
Did she have Alzheimer’s or some related dementia?
But the exotic diagnosis wasn’t material to the problem, which was finding a way to live with her dying.
As a family, we have imagined my grandmother’s condition deteriorating to the point where my mother and father can no longer care for her at home.
I think it’s the moral cost that appalls us the most. No matter how well-meaning the institution, no one at a geriatric hospital would know who Choppy is. We need her with us. We must do what has to be done. We’re going to stick with her as long as it’s humanly possible. We’ll bathe her. We’ll make sure she never has bedsores. We’ll feed her. We’ll learn to take care of our own.
The family did soldier on to the final release when, riding a morphine wave, she spoke her last words: “Well, I guess we’re in Yuma.”
Nearly 35 later, that forgotten column comes back to haunt me. Alzheimer’s is stalking my generation now.
A tennis friend recently lost his wife to dementia long before she died. Another friend, a journalist, is beginning a parting of such bittersweet sorrow.
The plague, afflicting 60,000 in the county, according to a new report, shows no signs of abating. In 35 years, we’ve learned much about the disease’s chemistry, but we’re still learning to care for our own in a way we can live with.
Looking back, those brave words, for which I collected a few hundred bucks, were callow, vain and stupid.
We were ill-equipped. At times, it was a horror show. We needed help but were too damned proud — and, yes, cheap — to seek it.
But I wonder, would it have made a lasting difference? Would part-time help or assisted living, and all the uncertainties tied to it, have assisted us so much?
Maybe there’s a way out from the sorrows of dementia, but two generations later, it’s hard to see this side of Yuma.
Comments from Faye Girsh, Ed.D.:
Logan Jenkins has the courage to talk about the effects of dementia on his grandmother and his friends — and the 60,000 + others in San Diego County who are and will be afflicted with this mind-wasting disease. The worst part of it is the loss of personhood that it brings, to say nothing of the immense burden on caregivers and families that caring for someone so afflicted carries.
What surprises me is — as in many conversations about prolonged dying — how easily we surrender our dignity, our control, and our uniquely human ability to make choices in the face of illness and death. And we do that because our culture “values life” above all, more than dignity and choice
Personally, I don’t. I value a life with quality but not one where I am no longer able to do the things I enjoy, where I can’t recognize friends and loved ones, where I am dependent, where I am remembered as doddering, incompetent, and difficult. There are choices. Mine would be to end my life if I knew this was my future. The good thing about most forms of dementia is that the onset is gradual and you can make plans. A neighbor recently shot himself when he knew this was coming. But there are kinder, gentler ways to leave this life, even with a celebration if that’s your choice. There are books, videos, organizations that can help with non-violent, non-lonely methods. Or, if ending life yourself is too drastic, there are instructions to loved ones, caregivers, and doctors about ways to not prolong your demented existence. It is not necessary, for instance, to treat infections when they occur. You can request comfort care only — to allow natural dying. You can let people know who are caring for you to not insist that you eat and drink and definitely not to do it by inserting tubes. If dementia is in your future you can specify that you want no invasive measures, like dialysis or CPR, to prolong your life.
We all used to die natural deaths but that rarely happens any more. But you must let people know what your wishes are. If you do not want your demented life prolonged you do not have to receive measures that will sustain that life. You can insist now, while you can, in your advance directive and with people who know you, that you want a natural death and to be kept as comfortable as possible, even it hastens your end.
There is no reason to lose control, dignity and choice because dementia has struck. Decide now what you want your quality of life to be and make the appropriate arrangements. Our increased longevity has given us many new opportunities — and burdens and responsibilities. Get a strong advocate to make sure your wishes are carried out and don’t relinquish your choices and personhood to a crippling disease or to the “love” of people who might want to see “everything done” to maintain what for you is an unacceptable quality of life.