“The older I become, the more I see dementia care as a spiritual endeavor. I say this primarily because the majority of persons I’ve observed to be living well—either as ones diagnosed with dementia or their care partners—rely heavily on the spiritual for their sustenance and well-being.”
Some may consider this a rather curious statement coming from a neurologist. Dr. Daniel C. Potts has been practicing for 23 years, the last eight with the Veterans Affairs (VA) Medical Center in Tuscaloosa, AL. As a generalist, he sees patients who have all kinds of neurological and psychological issues, including PTSD, addictions, mental illnesses, as well as dementia. He’s dealt with well over 5,000 patients suffering from Alzheimer’s or other forms of dementia, and he’s emerged as a leading national advocate for those living with dementia and their caregivers.
Now 55, Dr. Potts began to explore the spiritual aspects of a disease like dementia after he personally collapsed into a dark hole of emotional and psychological conflicts not long after his father was diagnosed with Alzheimer’s. He shared this experience with us in the fall of 2018 in this post, What His Father Taught This Doctor About Alzheimer’s.
“I don’t dare try to instruct someone who has walked, or who is walking this road. I realize that the demands or experience of care partnering may make it very difficult to see anything redemptive about it, to consider the spiritual at all in the struggles. And I respect that.”
Nonetheless, he says, “What I have written is shared simply to encourage, to offer a paradigm that I and many others have found to be health- and peace-promoting, and to offer hope that I know is needed by those on this journey.”
Dr. Potts recently wrote an essay titled Thoughts on the Spiritual in Dementia Care. This conversation is extracted from that essay and from our phone discussions. As many of you know, I cared for my active and vital wife Martha for 17 years, starting in 1997 when she was diagnosed with early onset Alzheimer’s at the too early age of 50, and our three children were still in high school and college.
Dr. Potts nor I need to describe to you all the dark spaces, frustrations, anger, hurt, loneliness, and depression that the symptoms of dementia and Alzheimer’s can hurl at you. If you’re one with such a disease, you know. If you’re a family care partner, you know.
You will understand when I describe such an experience as an “odyssey” rather than a “journey”. The word “journey” seems too tame and planned for what our family went through, a path too easy to follow. In the classical sense of an odyssey, you wake up one day in a strange, bizarre land. You’re hurt, you’re confused, and you’re scared. All you want to do is get back home. You’ll go anywhere to get home, you’ll do anything. And when you do get home—IF you do—you find home is not the same place as when you left. And you’re not the same person.
“By honoring the spiritual in dementia care,” says Dr. Potts, “I’m talking about honoring the sacred self in each of us…that central element of ourselves that renders our personhood immune to diminishment by any disease or condition.
“I’m employing a broad definition of the spiritual as having to do with the essential, the inner, the relational, that which promotes growth and not decay; acceptance and not denial; peace as opposed to conflict; love as opposed to fear; trust instead of anxiety; gratitude in contrast to resentment; community versus isolation; creativity as opposed to stagnation; depth not superficiality; compassion rather than heartlessness. Organized religion certainly may fall under this category, but it’s not essential for many persons I’ve encountered.
“Thus considered, this sacred self or personhood becomes the solid foundation upon which to build the structures of dementia care, with the goal of supporting your loved one’s personhood, enabling their expression, and promoting their natural instinct for relationships. This personhood can be found if we cultivate the perception to ‘see’ it. I consider this to be spiritual work of high order.”
Me: How do you cultivate such a perception, Dr. Potts? Can you give us an example?
Dr. Potts: OK, take my father. Not long after his diagnosis, he began to do something he’d never done before. Under the direction of an artist-teacher, he began to paint prolifically with watercolors, and he did so almost until the day he died. My mother and I did everything we could to encourage this new-found talent, and you could almost see a light radiating from Dad, even when he had trouble expressing himself any other way.
One of Dr. Potts’s favorite paintings by his father
CM: Interesting. A similar thing happened with my wife. With the encouragement of our sister-in-law KK, she and Martha entered an art class a couple of years after her diagnosis and Martha produced some pretty amazing art over two to three years. Even more amazing was the unexpected return of her confidence. Her teacher told me, “Carlen, I don’t know where this coloration is coming from; you just can’t teach it.” Singing and dancing also worked wonders with Martha for a while. The impact of meditating together seemed to last the longest.
Dr. Potts: Exactly. The world of the spiritual is a world of gifts—graces small and large, often unexpected—which can bring uplifts on dark days, and for which one may begin to look, expecting to find these hidden treasures in the secular and mundane.
CM: So as you discuss these spiritual aspects, you’re not necessarily talking about some particular faith or religion?
Dr. Potts: That’s true. One may practice the spiritual in dementia care and not know it, or at least not name it, as with Dad’s art and your wife’s. There is nothing wrong with that. However, considering the spiritual as spiritual has some advantages. First, it brings an element of mystery, which you may find to be supportive. This can promote trust in something greater than yourself and in your own powers…which may be greatly taxed in a care partnership. Any caregiver knows it can be exhausting to struggle, often futilely, to exert your own power to control situations that cannot be controlled. Furthermore, considering the spiritual as spiritual may elicit a sense of awe or wonder while fostering humility and gratitude. And not inconsequentially, it can create a sense within you of belonging or fitting into a much larger framework, into a broader realm, which can be a freeing experience.
CM: As I reflect on our 17-year odyssey, I think the greatest need I felt was this: To know that Martha, our children, and I are loved by our Creator—that invisible Creative Force of everything—that we are loved deeply and intimately in ways we’d not experienced. I so often saw my heart and mind fracturing before my eyes. There were four particular moments in which I felt most alone, guilty, shamed, grieved, and confused: When Martha was diagnosed; when I had to take the car keys away from her; when she had her first full-on seizure; and when she needed to move into a nursing home. During some of these times it was as though I heard a voice whispering to me: “It’s OK, Carlen, you don’t need to be perfect in caring for Martha. Just do all you know to do, and allow me to move through Martha and you; let me heal all the broken pieces within you both.”
Is this what you’re getting at?
Dr. Potts: Yes. The benefits of viewing the dementia journey and dementia care as spiritual may indeed coalesce in your wellbeing by reducing stress and its effects; by fostering resiliency; by making something meaningful out of your suffering; by garnering substantial hope and joy despite your loss and grief; and eventually, cultivating a sense of “presence” and “transcendence”—an unbinding or freeing, if you will, of dementia’s constraints as well as your own ego’s.
Martha’s painting titled, ‘Somewhere Over the Rainbow’
Dr. Potts continues: Seeking the spiritual in dementia care means reaching for the depths of your loved one, coming into contact with their core of authenticity. In order to do this, you must find a way to access the same place in yourself, though I believe this initially is not the focus. I believe this inner journey can be enabled through the care partnership, if allowed, and is accompanied by openness, vulnerability, mindful listening, non-judgment and reciprocity, so that your energy and attentiveness are continually renewed.
This can help a caregiver from burning out.
CM: I can relate to that. Our daughter Rachel was very frustrated early on with Martha, and she reminded me not long ago that I told her, “You’ve got to step into Mommie’s world now, Rachel, you’ve got to try to understand what Mommie is trying to tell you, even though her words are garbled and her behavior is confusing.”
Dr. Potts, you’ve obviously given much thought to the relationship between dementia care and its spiritual aspects. I doubt you’re expressing this, though, to the exclusion of all the physical care required of something so volatile as the symptoms of Alzheimer’s and dementia.
Dr. Potts: You’re absolutely right, Carlen. The requirements of the physical needs and their various aspects are topics for another day.
CM: One last question. I do find your perspective unique among neurologists I’ve met or read. The only other one that I know whose view echoes yours is my wife’s former neurologist, Dr. Steven Cohen. Did you learn about these spiritual qualities in medical school?
Dr. Potts: No, I’m afraid not. And not even during my residency program. I began to explore the impact of the spiritual as I emerged from my dark period we mentioned earlier. I’m encouraged a bit that some of the nation’s largest teaching hospitals are introducing these values into their programs. But we have a long way to go.
CM: Thank you, Dr. Potts, for sharing your experience and insights with so many of us. I hope many caregivers find encouragement and strength to draw on these depths as they move forward on their ever-shifting grounds of dementia care.
Dr. Potts: One last thing. I stand in awe of the loving care I have seen expressed by so many care partners, and the courageous living of persons with dementia. I acknowledge, in deep gratitude, all who have shared such a vision with me. Godspeed, care partners, along your way.
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Again, Dr. Potts’s full essay can be found here: Thoughts on the Spiritual in Dementia Care. Thank you, friends, for taking the time to read and reflect on what I think is a most meaningful conversation. I suspect Dr. Potts’s insights can apply to many crises other than dementia care.
Until next time,
Carlen Maddux
carlen@carlenmaddux.com
www.carlenmaddux.com
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PS2 An inexpensive way to support the end of this disease is to buy several sheets of the Alzheimer’s first-class stamps at 65 cents a stamp. The net proceeds from its sales go to the National Institutes of Health for Alzheimer’s research. As of December, over 8.5-million stamps have been sold, raising over $1.09-million. Join me and thousands of others to Help Stamp Out Alzheimer’s. If you can’t find it locally, you can order online by clicking here ($13 for a sheet of 20).
PS3 My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be ordered from any bookstore or found on Amazon. I share our family’s 17-year odyssey of living with this disease. But Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded before us, sometimes in strange and surprising ways, other times in the most ordinary of ways.
