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

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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.

11 Responses to ““Mommy’s” Long Life with Alzheimer’s Disease”

  1. Steve Moffic

    In all the complexity of this story, I was most impressed by your desire for your mother to live, despite all your psychological pain and her lack of recognition. Sometimes, that could be the deciding point in trying to stay – or keep one – alive; that it is the benefit to loved ones. Perhaps that will be an example to your own daughter.

    The African caretakers may also provide a lesson for us. Back from South Africa, I was so impressed with the value and respect placed on the elderly (ancestors), just for being elderly. If they are still mentally alert, their wisdom is embraced.

    Yes, the costs are often an issue, but when we think about all the money spent on material things that may not be necessary, I’ll go for life.

    • Sidney Callahan

      I think other cultures may have something to teach us about old age and dying. But they also may not have the high technology available that makes our problems so insistent. The intense interest in living however may be innate. I’m reading Damasio on Bringing Self To Mind and he makes a point of how powerful the dynamic for life is in nature and the universe. It seems to fuel evolution and our reactions to our families as well

  2. renie

    If one does not have $135,000 to pay for 24/7 care, or, let’s say, even half that amount, what then must we do?

  3. Hope Reiner

    My mother died of Alzheimers and for me it was a turning point in my life.

    We did not have a positive relationship and I always felt a terrible sadness in knowing that we just could not get beyond our problems.

    As my mother’s disease progressed, so much of her bitterness was eradicated and we were able to forge a loving and caring relationship. I will always think of her with love, compassion and gratitude and that we were able to heal our relationship in spite of the fact that she could no longer talk or walk.

    • Sidney Callahan

      I have heard other good inspiring accounts of restoring relationships in the disease and dying process. As a friend once commented to me on our increasing human lifespan, “So much moe time to say I’m sorry.”

  4. Stanley A Terman, PhD, MD

    Consider two logistical points when attempting to answer the operative question, “But at what point?” if the goal is to avoid a prolonged dying, as suggested, by “institutionally arranging with safeguards in place, to refuse food and water.”

    1) Advance Care Planners can generate a clear and specific Living Will to guide future decision-makers as they try to discern if a future condition is consistent with judgments they previously expressed while they still possessed capacity. [1]

    2) The idea of refusing HELP from another person’s hand to put food and fluid in one’s mouth must overcome the prevailing huge resistance. Three examples: A) Our food-loving culture; B) The Catholic religion; and, C) The bias of POLST (Physician Orders for Life-Sustaining Treatment) Paradigm forms.

    Regarding (A): Education can help loved ones understand that the needs of the dying, including those who are dying slowly as they suffer from dementia, are different with respect to nutrition and hydration. One comforting safeguard is to always place food and fluid in front of the patient. Those who suffer from an advanced stage of dementia cannot understand how to eat independently so they will remain untouched. Patients can be comfortable if treated with agents to reduce their thirst.

    Regarding (B): It should be possible to reach a common clinical/legal/ethical/moral ground by working with Catholic bioethicists and theologians, and such work is in progress.

    Regarding (C): The POLST Paradigm may be the most successful end-of-life planning program. But two-thirds of the forms (either in use or being considered) include this kind of physician order as a “mandate” [2]: “Always offer food and liquid by mouth if feasible”; or: “Oral nutrition must be offered if feasible.” The forms offer no other choices and no check boxes; they thus make it appear as if there is NO need to discuss the “choice to forgo HELP from another person’s hand to put food and fluid in their mouth ” in a “POLST Conversation.” Yet this treatment decision may be among the most important a person can make in advance. This reason is because the advanced stage of dementia is among the most cruel, most burdensome, and most prolonged of all diseases.

    [1] One living will that strives to be clear and specific with respect to the advanced stage of dementia is the “Natural Dying—Living Will” (offered by Caring Advocates, a non-profit organization).

    [2] Informal review done, Summer, 2012.

    DrTerman@gmail.com

    • Sidney Callahan

      I think developing more nuanced guidelines or detailed wishes for feedubg in end stage Alzheimer’s disease is a very necessary steo. But could I really put food down in front of my relative or patient and not feed her? Feeding is the only communication and caring left at the end. Maybe some other caring comforting physical ritual could be substituted–giving water by bottle or rubbing with ice? Women who have been mothers are going to be doing this caretaking and it can’t be like starving or a hunger strike routine.

  5. Joanne Lynn

    If we want to avoid a prolonged period of serious disability in the end of our lives, there is usually a way to achieve that by not providing a treatment (but ensuring comfort). Should that be a “default” option? or a readily available option for many people? For myself, I would not want a long period of requiring spoon feeding – if I can’t recover enough to make other decisions, then stop tricking my swallowing reflex into sustaining me. I know that there are tough boundary conditions (what I seem hungry and satisfied?) but realistically, most people “sick enough to die” will do so if we hold off on rescue.

  6. Sidney Callahan

    Joanne, I’m with you in my thinking. But Mommy has never been rescued and so holding off rescue is not always an option. And she does seem satisfied by eating. So some comforting something needs to be devised and those of us willing to starve stright out be provided with a way to do it with comunity acceptance. We can’t all have the good fortune to have you as our doctor at the end.

  7. Stanley A Terman, PhD, MD

    Sidney,
    I agree with Joanne Lynn.
    One ritual that can be substituted has the goal of reducing the symptom of medical dehydration experienced in the mouth, which is of course “thirst,” by applying a variety of agents, including sprays, gels, liquids, drops, and especially glycerin-coated, lemon-flavored swabs. (The non-profit organization Caring Advocates sends out a Thirst Reducing Aid Kit,or TRAK, at cost to those who request it.

    My experience: When my step-mother realized the time had come to change the way she nurtured her husband had come, not only to stop chicken soup but also Ensure, she was a quick study as she learned how to reduce possible discomfort from “dry mouth,” and doing this help her feel important as she cared for her husband in a different way for the last few days of his life.

    Putting food and fluid in front of the patient, if the patient is severely impaired cognitively, should not be a problem. It was not for me, during my two total fasts. But this is something a cognitively intact person can decide ahead of time; for example, “Two days is enough.”

    Finally, if you can be sure that your loved one is still really enjoying being fed, or anything else for that matter, then the time has not yet come to stop HELP from another person’s hand to put food and fluid in the person’s mouth.

    DrTerman@gmail.com