“Mommy’s” Long Life with Alzheimer’s Disease

My dear 99 year old stepmother, Virginia, has just been discharged from the supplemental hospice care program within her Alzheimer’s care facility.  Why? Because she has survived for almost two years beyond the six month prognosis for survival required for inclusion. She has not died and is considered stabilized. Her advanced Alzheimer’s disease is now again being cared for solely by the regular staff and her privately employed morning aides.  

Virginia, known as Mrs. Eldridge to the staff and Mommy to me, sleeps most of the time. Every day she is bathed, changed, dressed nicely, and moved from her bright private bed room, to her wheel chair, to the dining room, to the solarium and back. Once a week her hair is done and her nails are manicured. Kind and attentive aides feed her three specially pureed meals a day, for she cannot feed herself. She cannot walk, talk, or recognize faces or respond to voices either. Ten years ago she was much less impaired and could communicate and enjoy the programs and activities provided for the residents, but no longer. Yet all agree that Virginia, immobile and nearly unconscious, does not show signs of pain, physical discomfort or emotional distress.

But I certainly experience feelings of sorrow for her. As her designated responsible caretaker and only family visitor, I can be beset by pangs of pity and other emotions. Almost everyone she has known and loved has died. When she could still talk she used to ask why momma or poppa or my father, who died in 1958, didn’t come to visit her. It is dreadful to see the physical and psychological depredations that disease and extreme old age have brought in this loving, lively, gracious person. All the gratitude that I feel for her goodness to me can no longer be communicated.  I am helpless and unable to comfort her or remedy her depleted near comatose state.

At moments I wish that she would peacefully die and not linger on in this half life. But last year when I was called to Mommy’s bedside during a bout of flu, I had a completely opposite reaction. As she labored with her oxygen tube I found myself frantically praying for her recovery. No, please Mommy, keep breathing, don’t die. When she pulled through, I rejoiced; but was I relieved for her, or for myself?

The horror of Alzheimer’s incites intense anxiety in everyone, but particularly, perhaps, for academic types like me who live by our intellectual wits. Not to be able to read, think, write or communicate truly seems the proverbial fate worse than death. These fears may even skew our emotional reactions.

I notice that Virginia’s affectionate and patient caretakers, many of them immigrants from Africa, appear to take mental incapacity, aging and death in their stride as part of life. At times I can achieve a more accepting approach to the situation by reminding myself that each life history exists as a whole. Surely remembering Mommy’s full rich story of nearly a century outweighs this debilitated ending.

More often I spend mental energy trying to devise a way to outwit the end of life’s sand traps. I could never morally approve of killing myself, or anyone else, but can there not be acceptable strategies for letting oneself die in a timely and spiritually wise fashion. Mommy had signed a living will refusing tubes and ventilators, but for the “biologically tenacious,” death may not arrive before the mind and personality have long departed. Could you not, while still sane, choose to ask for nothing but palliative and comfort care? Perhaps you can institutionally arrange with safeguards in place, to refuse food and water at some point. But at what point?

My daughter jokes that they’ll have to shoot me when I can no longer read – but that seems too precipitous as well as violent.  Another plan might be to refuse to visit the doctor, take no tests, and leave sworn instructions not to call 911, regardless of what happens. After 85 perhaps?  Obviously, I am bravely strategizing as a presently healthy, pain-free, Yoga-practicing, gym-going, youngster who swims in Maine waters – and still reads and writes. I seriously doubt I could courageously follow through on this good death campaign if I become sick; and if I become demented I wouldn’t be able to.

Such personal quandaries are frustrating. Other depressing dimensions of the problem involve economic and societal factors. Future financial crises loom for the elderly as fewer Americans are able to retire with adequate incomes. Even with Medicare many older people will not be able to afford expensive end-of-life health care. In Mommy’s case money is not a problem since she shrewdly managed her widow’s legacies from two devoted and prosperous husbands. At this point her exemplary care costs her estate around $135,000 a year.    While we can all agree that money spent on caring for the old and ill is money well spent, we can despair over where the money will come from for those less financially fortunate than Virginia.

The larger health care future looks bleak. But for those over 65 psychological and moral challenges are already here.

Sidney Callahan,79, is a writer, psychologist, and former professor.