Death Control for Alzheimer’s/Dementia Patients?

Ten days ago, I wrote about “death control,” encouraging legislation for and use of medical aid/assistance in dying, often referred to as MAID (or MAiD). But as I wrote then, MAiD cannot legally be used for those suffering from severe dementia such as caused by Alzheimer’s disease.  

The Prevalence of Alzheimer’s/Dementia Patients

Alzheimer’s disease and other forms of acute dementia is a prevalent problem in this country, and in many countries around the world.

In the U.S., “The Alzheimer's Association leads the way to end Alzheimer's and all other dementia—by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support.”

On their website, the Alzheimer’s Association reports that currently more than 6,000,000 Americans are living with Alzheimer’s.

There can be no doubt but that Alzheimer’s/dementia is a prevalent health problem—and one that is made worse because at present there seems to be no sure way to prevent its onset or to cure it once it begins.  

The Sadness over Alzheimer’s/Dementia Patients

We don’t/can’t know what sadness an Alzheimer’s/dementia patient himself/herself feels, but clearly, the family/friends of such patients repeatedly feel great sadness, as I have personally experienced.

My mother passed away in February 2008 at the age of 94. She was never diagnosed as having Alzheimer’s, but for several years her dementia grew worse and worse. It was a sad time for her family, especially for my father who cared for her at home until his hospitalization and death in July 2007.

Maybe it was about a year before she died that I realized the seriousness of, and the sadness of, my mother’s condition. I made the two-hour drive from my home to visit her at her home in northwest Missouri. That morning, my sister, who lived a five-minute walk down the road, came over to visit.

After the three of us had a convivial chat, my sister left to attend to other matters. Right after she left, my mother cheerfully said to me, “That was a nice lady. Who was she?”

At that point, the sadness spurred by talking with a dementia patient hit me as never before. Still, I tried to visit my mother as much as possible and my sister saw her almost daily.

Perhaps you have heard the story of the man who went to the care facility where his wife, suffering from severe dementia, was a resident. Her illness had progressed to the stage that she no longer knew her husband, so someone asked the man, “Why do you keep going to visit her?”

The man’s answer, “She may not know who I am, but I know who she is!”

That is what my sister and I felt about Mom.

MAiD for Alzheimer’s Patients?

In two recent blog posts, I have written about using MAiD, medical assistant/aid in dying. But that is not now, and maybe never will be, an option for Alzheimer’s/dementia patients.

Both for the sake of the patients and for the sake of their families, it would seem that some form of death control would be desirable. But at this time, it is not legal and does not seem feasible—and it may never be.

As I have previously explained, MAiD makes it possible for a terminally ill person to choose to die.

That decision, though, must be the patient’s own choice and can be no more than six months before their death as prognosticated by competent doctors. For Alzheimer’s/ dementia patients, however, it is either too soon to make that fateful choice or too late for them to be able to do so.

So, what can/should be done? At this time, perhaps all that can be done is to provide for the comfort of the patient and then to practice “passive euthanasia.”

That is, whenever someone with acute Alzheimer’s/dementia develops a serious illness, see that their pain/suffering is mitigated as much as possible and then allow nature to take its course, rejecting medical means to keep the patient alive.

Alzheimer’s: The Long, Sad Goodbye

Had she not passed away in 2008, last Wednesday (2/13) would have been my mother’s 99^th birthday. But as sad as it was, it was a blessing she passed away when she did. Although she was never officially diagnosed as having Alzheimer’s disease (AD), it was sadly clear that she was experiencing progressive dementia, which was most probably AD.

When June and I returned to the States in August of 2004, there were some signs that Mom was having some cognitive difficulties, but nothing that seemed very serious. Over the next three and a half years, though, we saw a fairly steady decline. When I saw the poignant online article about Alzheimer’s being the disease that leads to a “long, sad goodbye,” I knew firsthand what it was talking about.

I have recently learned about David Hilfiker, a social activist, author, and retired medical doctor. He lives in Washington, D.C., and Keith (my older son) knows him personally. Dr. Hilfiker (b. 1945) went through Yale University on scholarships before going to medical school and becoming a doctor. But now, sadly, he has AD.

Recently on his website, Dr. Hilfiker posted “Watching the Lights Go Out: An Autobiography.” That touching article begins abruptly with these stark words: “I have Alzheimer’s disease.” Very candidly he then shares the first indications (in September 2012) that he has “progressive cognitive impairment,” which he thinks is almost certainly the early stages of Alzheimer’s.

“As a retired physician who has seen his share of mentally declining patients,” Dr. Hilfiker writes, “I know what’s most likely in store as the disease gets worse: A long, progressive mental decline (to the point, for instance, where I don’t recognize my family), nursing home care, and early death from complications of the disease.”

But he is trying to make the most of the time that remains for him to write, sharing what it is like to fight the dreaded disease known as Alzheimer’s. It will be interesting to see how long he will be able to write about his experiences, and what he has say about them. Perhaps the greatest help will come from his honest sharing, squarely facing the problems caused by AD and dealing actively with the issues it raises, rather than trying to deny its existence. That’s something that all AD patients and the families need to do.

Perhaps falling victim to Alzheimer’s disease is one of the most prevalent fears of the future for all of us who are over the age of 65. Statistically speaking, it will hit many of us—and the longer we live the greater the chance is that we will suffer from AD before our demise.

The hope, of course, is that soon there will be an effective treatment for those with Alzheimer’s, one which will greatly slow the process if not curtail it altogether. The federal government has made prevention of AD a goal to reach by the year 2025. But for some of us, that will not be soon enough.

So each of us older people live in hope that we will not become a victim of AD in the first place or that if we do, there will be some effective medication we can take so our loved ones will not be forced, as so many people have been up until the present, to say a long, sad goodbye.