Synopsis
When Allison began to care for her mother with Alzheimer’s, she started to ask some difficult questions. At what point is a life no longer worth living? Would dementia be in her future too?
Worried that her mother’s fate may be her own, Allison comes up with an unusual approach to try and control her own demise: start smoking. After all, she would rather die of cancer or a lung infection than the way her mother did—unable to recognize her own family, to take care of herself, or even speak. The tough part will be getting her family and friends on board with her new perspective.
Full of compassion for both Alzheimer’s victims and those it affects—caregivers, family, and loved ones—Allison’s Gambit brings a taboo topic to the forefront and asks us all—what would we do?
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Excerpt
Chapter 2
Considering I had a front-row seat for my father’s last days, it might seem ironic that I took up smoking. The fact is, my habit has nothing to do with him and everything to do with my mom, Nancy MacPherson. Now they have both passed away, and I smile when I think of my father. The emotions I go through when I think of my mother are complicated. On a good day, I manage a slight smile, but on most days, I just feel relief that she finally died.
Now it is so clear that, despite knowing what my father went through, if I had to choose a death, I would choose his in an instant. He died; my mom suffered. Actually, that’s not exactly true—everybody else around her suffered.
It must come across as callous to those who don’t know what happened, but my mom’s dementia caused a suffering like no other. It made me realize that there are different ways to die. I won’t say I became fixated on death; I just became aware it was going to happen, which I know sounds stupid. We all know we are going to die. It’s just…we don’t think about it. We push it into the recesses of our minds. But somehow I know I’m destined to die like my mom. And I have consciously decided to try and alter that reality. Why die of Alzheimer’s when you can die of something else—anything else?
I have generally learned not to express my uncommon beliefs, so they won’t attract disdain. No one enjoys opening themselves up for criticism and feeling like an emotional punching bag. Reticence seems the wiser option. But I have decided to change that and tell my story despite realizing that many will look at me like I am a pariah. If this diary were a YouTube video, I would likely have far many more thumbs-down than thumbs-up. How do I know this? Because this is not my first foray into asking the world to pass judgment on my feelings.
Though you have probably already learned this lesson, don’t say anything political or controversial on social media. Random people you don’t even know will actually threaten you because you provided tips on how to save water. Water! I wish I were making this up, but I speak from experience.
I’m sure the same surprise hits people after they post their first video on a public site, maybe of their six-year-old daughter at a ballet recital. The social-media affirmation complex doesn’t make
up for the rather surprising number of thumbs-down they receive. It’s enough to make you question yourself. “Maybe she isn’t such a good dancer? Perhaps I should have made her practice more.”
Now that it has been a while since my mom passed away, emerging from my cocoon seems imperative somehow, and there doesn’t seem to be a minute more to lose. I need to reach out to all of those other caregivers who are like me. I realize now that I have not only been grieving; I have been avoiding the well-wishers who often leave me more depressed. But mostly I have been avoiding telling my family and friends about my philosophy.
It is time to tell my story and convince at least my friends that I have something to offer from my experience. I am stronger now emotionally. I’m ready to take on the world, even the strangers who will pleasantly yell at me, “Just shut up and die already.”
From Allison’s Gambit Copyright C.A. Price, 2021
Q&A with C.A. Price
If you knew that dementia was in your future, would it change how you lived now?
This question is not too dissimilar to “If you knew when you were going to die…?” The response, however, could be different if one considered being alive with dementia worse than death itself, which is the presumption made by Allison in the book.
It would be fair to say that until we get to a certain point, we aren’t sure how we would answer the question. But the goal of the novel is to challenge the reader into doing this thought experiment for themselves. And the true hope, we realize at the end, is that the author WANTS people to live their life differently. What this means for each person can be quite different. But a personal example I wish to share: I am a father of an amazing eighteen-year-old young man. I am also a dedicated physician. I can’t tell you how many meetings I have sat through that I found to be a waste of my time. In the past, I would politely sit them out. After writing this novel, I began to just get up and walk out, returning home to my son and enjoying his company.
As nursing homes seem not to be desired by anyone, can you imagine a better way to care for the elderly?
I think that nursing homes are a necessary part of our lives as we age. But there is a stigma about nursing homes that likely would be different if we changed our philosophy about dying. I know this will likely be controversial, but I do feel that if we were more comfortable with death, we would choose comfort care and hospice much more frequently. Nursing homes would still exist, but I don’t presume they would feel as depressing. I think they would feel more vibrant as we would move to celebrating the end of someone’s life, rather than prolonging it at all costs.
Why do families take so long to choose hospice when they overwhelmingly feel more at peace once they do?
I think if you asked ten hospice volunteers this question you would receive ten different answers. There would, however, likely be a few themes. There is a cultural fear of dying. Further, a sense of failure when it occurs.
I recall first coming to understand this as a resident. While working in the Intensive Care Unit, you might start with six patients when you took over that evening. If all six were alive in the morning, this was a success. Even if one or two died within hours of you being off shift! Death on your shift was a sign of failure. Similarly for families, not trying every single treatment, medicine, etc. is felt to be “giving up.” “How dare you suggest that we stop trying?”
What I hoped to leave the reader with was a sense of how we remember our loved ones. What I have found is that if we remember them as feeble, incapable, in pain, it can detract from who they were for the majority of their life. Further, when we start to imagine ourselves this way, patients universally seem to say, “I don’t want to live like that.” In other words, part of the goal in writing this book is to shine light on this paradox. When we think about what we want done for ourselves we seem to universally embrace the concept of hospice. However, for our loved ones, we seem burdened with a sense of guilt in not doing enough.
Why did you feel the need to write this book? For example, do you hope that it will help someone who is in this caregiver position feel like they’re not alone?
There are several reasons I began to write, but only one reason I decided to publish. The reasons I began to write came from my shock at the unusual choice of my patient—planning to continue to smoke so she wouldn’t live long enough to suffer from dementia. The shock evolved to interest as I explored this philosophy with writing. Writing helped me explore my own thoughts about dying. And oddly, this led to a recognition that I wanted to start living differently as a result. When I got to the end of the book I recognized that I had a great deal of sympathy and understanding for Allison. I realized that no matter what is going to happen to me in the end, I wanted to live my life differently NOW.
Why I decided to publish is that I began to realize the difficulty with caregiving. The physical and mental toll it can take on an entire family. I started to realize there are few services for this and even fewer conversations. It has become my belief that until we start having real conversations about our feelings, the guilt, the physical burden that often prompts moving to a nursing home, we aren’t going to get any better. I really want this book to begin a conversation that screams we must do better. This can’t simply remain part of life that will work itself out. And we can’t leave cost out of the conversation. I can’t tell you how often I have felt that if families had to pay five percent of the cost of treatment they would suddenly have a change of heart when it came to demanding that all must be done.
What have been your personal experiences with elder care, Alzheimer’s, and caregiving?
Perhaps the best decision I made was to start doing home visits. And yes, I seem to feel I’m the only physician who does them. This allows me to get three different perspectives:
–Seeing patients in my office
–Seeing patients in nursing homes (or assisted living)
–Seeing patients in their own home
Home visits are incredibly interesting and rewarding. The love people show is different than any other environment. For this reason alone, I can never imagine not doing home visits.
One thing that complicates dementia is that medical insurance doesn’t pay for caregiving when a person is not “homebound.” If they don’t have a “medical need” such as wound care, requiring IV antibiotics, or they are so debilitated it would be great difficulty to leave the home…there is little nursing care that can be obtained. Patients with dementia often don’t need any of these things, and yet they require full time care, including during the night when they can be particularly active.
I find that by going to a patient’s home I can far better assess the difficulties shared by the caregivers. I think it has given me greater empathy and a recognition that there is a big gap in potential care for those with Alzheimer’s.
Another thing that happened early on in my career was understanding and appreciating the role of hospice care, which has evolved to now include supportive care. Briefly I’ll explain the difference: Hospice asks the physician to give a diagnosis and an expectation that a patient has less than six months to live. Supportive care also asks for a diagnosis—typically one of only a few such as heart failure, kidney failure or cancer—and that “it wouldn’t be surprising if your patient didn’t live for more than a year.”
What’s absolutely amazing about both is that their statistics completely surprise everyone. With hospice, those who join tend to live LONGER than their counterparts that don’t. With supportive care, the overall happiness is greater and the cost of care is lower.
What I would like to see is a greater move to accepting “supportive care” for other diagnoses such as dementia. This would allow nurses, caregivers, spiritual therapy, psychotherapy for patients that would get paid. Right now this is not the case. Why this tends to be cheaper is that families begin to accept the dying process differently. They recognize that this care, the socialization, the comfort is more desired than another trip to the emergency room or ICU.
About the Author
C.A. Price is a family practice physician in California. The philosophy of Allison’s Gambit was inspired by patients of his who have been caregivers to those with dementia and his continued observation that these family members often end up with tremendous guilt. His work with hospice has taught him that those who change their views about dying seem to live so much better. It is his first novel.
