Tough Decisions About Dementia and End-of-Life Care

To the Editor:

Re “My Father Didn’t Want to Live if He Had Dementia. But Then He Had It,” by Sandeep Jauhar (Opinion guest essay, Oct. 28):

As a hale elder, about to become 90, I have a terrible fear of getting dementia. I can relate entirely to the way Dr. Jauhar’s father felt in his healthier days, but I think Dr. Jauhar is missing something that his father likely felt, which he may not have articulated in his advance directive.

I suspect that he never wanted to be a burden on his children. That is certainly what underlies my urgency to beseech my children to allow me to die if I get dementia. The thought of the burden that it would impose on those who love me is unbearable.

Please listen to those advance directives. What good does it do to merely exist without the zest and delight of awareness? I think that a father who loved his sons dearly and expressed those early thoughts would bless them for allowing him to die with dignity, as he wished in his sentient days.

Carol Landau-Meyerson
Floral Park, N.Y.

To the Editor:

Sandeep Jauhar’s essay should make us think more deeply about assessing quality of life. My father, Eugene Lang, a brilliant philanthropist and entrepreneur, developed outward signs of Alzheimer’s in his late 80s. He remained physically strong and healthy otherwise.

He knew he was diminished. “I think I reduced myself from one thing to something else,” he randomly observed one day.

My father never wept or complained of pain. He claimed to be “consciously content” — more genial than before his illness and rarely angry. He couldn’t read a book or remember what happened either long ago or five minutes before, but he could sing, word for word, all the verses of songs he taught me when I was a toddler.

This is how my father lived in the Alzheimer’s stage of his life. Had I described it to him before the disease took hold, he would have suggested that I shoot him; he was very worried about losing his marbles, as he put it. And so I signed the do-not-resuscitate order with confidence that it was what he had wanted.

But as the months went on, I no longer believed that my father’s wishes from a time before he had experienced his life with Alzheimer’s were dispositive.

Dr. Jauhar’s quandary reminded me of all this. My father never suggested that he didn’t wish to live. He continued to appreciate the pleasures of food, music and company. The circumstances of his life — a walker, fractured words, imbalance, confusion, 24-hour nursing assistance — would have horrified him at one time, but they rarely perturbed him in the moment.

I hear you had a good day, I said to him one night. “I didn’t have a good day,” he replied. “I had a damn good day.”

My father died at home in his sleep in 2017 at 98.

Jane Lang
Washington

To the Editor:

The loss of a beloved parent is wrenching, but I wonder if Dr. Sandeep Jauhar’s deeply felt ambivalence about respecting his father’s advance directive doesn’t reflect his own inability to accept his father’s decline and death rather than ethical qualms.

Since his father had clearly stated his wishes before he became too impaired to review them, it seems both infantilizing and disrespectful for his children to second-guess these desires when he can no longer defend them himself.

Surely the ability to enjoy a mouthful of ice cream is not a meaningful benchmark for continuing the diminished existence his father had clearly feared and rejected?

Jane Zimmerman
Palo Alto, Calif.

To the Editor:

Advance care planning is inherently problematic given that we cannot predict our future ailments and, importantly, cannot predict how we will feel about our quality of life when we’re afflicted with serious illness. Discussions with loved ones help, and the legal durable power of attorney is important. However, loving families may disagree about what your wishes are.

Dr. Barak Gaster has published a now widely used Advance Directive for Dementia, which addresses life-support choices in the various stages of dementia. Also, End of Life Washington has developed a more flexible and extensive set of Dementia Directives, allowing revocation and changes by the individual affected.

There ultimately comes a time to “let go” for all of us. Because advance directive documents are always nuanced, the deep discussions we have with our loved ones are critical to help them support our wishes at the end.

Jim deMaine
Seattle
The writer, a former pulmonary and critical care physician, is the author of “Facing Death: Finding Dignity, Hope and Healing at the End.”

To the Editor:

Dr. Sandeep Jauhar’s thoughtful analysis of the conundrum facing caretakers of a loved one with Alzheimer’s disease overlooks what, in my book, is the most important consideration: how my loved ones remember me.

My memory of my father, once a powerful intellectual with a commanding presence, is now overlaid by memories of him lashing out in anger and frustration at everyone around him as his condition worsened. Our relationship was always complex, but he left me with indelible sadness when, in his last somewhat lucid moments, he selfishly demanded that I kill him, with no concern for the possible imprisonment I would face.

My earlier memories of him are now buried under the vision of a man slumped in a wheelchair in diapers, looking at me with empty eyes.

I’ve had seven decades of life; a few more months at the end are nothing compared to what I’ve achieved and how I want to be remembered. I want to die with my dignity intact. I want to be remembered as a whole human, not a hollowed shell. I don’t want the last memories of my loved ones to be of me in a diaper, unable to answer the simplest questions.

Craig James
Santa Cruz, Calif.

To the Editor:

Both my parents made me promise never to let them linger, like so many of their friends. I’m a retired neurologist who has withdrawn support for hundreds of people. My colleagues told me it would be different when it happened to my parents. No, it wasn’t.

When my parents became incapacitated, my mother from a rapidly progressive dementia, my father from multi-organ failure, I kept them comfortable and did nothing more, offering food and water but no tubes. Both died within six weeks of their beginning to fail.

I was at their bedside when they died. Of course, it hurt, but I kept my promise. It was the second best thing I have ever done in my life (marrying my wife was the best).

I realize today that if I gave any gift at all to medicine, it was not in cures for patients. I was no super doc miracle worker. No, my gift was in facing the end of life, facing reality, which meant using the words death, die and dying, and doing what I could do — comfort, relieve pain and be present at the end.

Michael S. Smith
Eugene, Ore.