by Daniel C. Potts, MD, FAAN
“Mirror, mirror, on the wall, who in this land is fairest of all?
You, my queen, are fair; it is true. But Snow-White is a thousand times fairer than you.”
– From Little Snow-White, by Jacob and Wilhelm Grimm
“When you think of yourself, what is the image you see?” I asked my father in his later years, before Alzheimer’s had set in.
“I see myself as a young man of about thirty, full of energy, with my whole life ahead of me. Then I look in the mirror and see an old man who resembles my father.”
The human ego tends to construct its own version of reality which can diverge slightly, or perhaps significantly from the truth of what is. Sometimes even a brief glance into the various mirrors life presents can shock us into the real world. These reflections often more closely approach truth than the images we hold internally.
A fundamental question is this: “Do I approve of the reflection I see? What of truth is it showing me? Will my response be consistent with growth, or will it be maladaptive? Will I choose to respond to reality with meaningful and productive change, with complacency, or with subversive resentment and anger, like the queen in the familiar fairy tale?
The phenomenon of dementia represents a mirror, both for us as individuals in 21st century society, and for that society, itself. This reflection is a judgment: do we approve of what we see? Are our most noble features visible, those ideals we hold most sacred and revered? Are the highest standards of human ethics visible in that image? Do we see love, compassion, empathy, inclusivity and advocacy, embodied and enacted, looking back?
For me personally, the mirror of dementia has been one of life’s greatest teachers. With my parents’ retirement and move to a closer proximity, I envisioned warm days of relationship, grandparents in carefree play with our children, and the sunset years of their marriage spent at rest and in grateful reflection. Reality turned out to be much different, when the radioactive meltdown of Alzheimer’s implanted itself into the center of our world. How would I respond?
With denial, I’m sorry to say. And guilt, and remorse, and fear, and resentment, and even self-pity. These are not exactly the reflections of myself I would hope to see, common reactions among caregivers, though they are. If I had only known then what I know now.
Here is a certainty: All of us who are in relationship with others eventually will either be caregivers in some form or persons with dementia, and some of us will be both. I can’t begin to conceive of what it would be like to have dementia. But I would do well to try and learn as much as I can about it; to read the accounts of those who have written from first-hand experience what it is like; to seek out those brave souls who are sharing their struggles with others; to visit and engage those in relationship who are living inside this world of distortion and unfamiliarity. Perhaps then I can have a broader and deeper understanding, and can cultivate empathy that will fuel advocacy to effect positive change, produce greater awareness and lessen the stigma.
And to prepare myself for what my reflection may look like in the future.
Having walked the road of the caregiver, faced the uncertainties and challenges brought by each new day, and grieved the losses so keenly felt, I should take what I learned in the experience and help others on the same path.
I should explain to them the importance of acceptance; of making an intentional decision to love and care as deeply as possible in spite of the losses, the hurts, the cutting wound of the unknowing. I should tell them what I have experienced of the spiritual growth that is possible in this hardship; of the importance of developing a kind of spiritual intentionality early in the process, setting one’s mind to make the most of every day and practice gratitude, to enter as fully as possible into the world of the person with dementia, to see past affliction to the pulsing life of the person within, using all of one’s powers to keep that person engaged in relationship.
And I should urge them to love and care for themselves in the process, or they may not be able to make it.
Mirrors are intimidating. I don’t like to look into them. Paradoxically, though, I seem to be drawn to them. Perhaps I want to see my best self gazing back.
If I had looked into the mirror of dementia early in my caregiving experience, I would not have seen my best self. But we all have the power to change appearance based on what we see in a reflection. And the time to do that is now.
“We are now faced with the fact that tomorrow is today. We are confronted with the fierce urgency of now.” – Martin Luther King, Jr.
When I pass by a mirror these days, it’s my father that I see looking back at me, compelling me to draw out my best – to remember both the struggle and the triumph, the suffering and the hope. Have I responded in a way that honors his story and the stories of all persons with dementia and those who care? How does my reflection measure up against this test?
Have I visited persons with dementia living in residential care facilities, who perhaps have no family nearby?
Have I offered to sit with persons with dementia so that their caregivers can get a few hours of respite?
Have I volunteered to provide transportation to persons with dementia and their caregivers, or perhaps accompany them to medical visits?
Have I given gifts of time and money to local and national agencies which advocate for cure, effective treatment, or caregiver resources?
Have I spoken with members of Congress at the state and national levels to advocate for increased funding for research for cure and effective treatment, or increased support for caregiving services?
Have I made the effort to teach young people respect for their elders and those people with disabilities, and have I tried to facilitate intergenerational relationships?
Have I avoided speaking to a person with dementia or a caregiver because I was afraid I wouldn’t know what to say, or because they might ask for my help?
Have I offered to let a caregiver vent to me by telling me their story, and have I listened intently as they have done so?
Have I judged persons with dementia as being no longer present, and have I walked past them without even being mindful they were there, and might be in need of a little kindness?
Has the society of which I am a part confronted the plague of ageism which marginalizes vital members of our society to its detriment, depriving us and our children of their wisdom and relational maturity?
Has the society of which I am a part developed and funded programs which provide education about effective dementia prevention?
Has the society of which I am a part developed and funded programs which would provide resources and education to underserved populations struggling with dementia?
Has the society of which I am a part developed and funded the creation of dementia friendly communities on a widespread basis?
Has the society of which I am a part developed and funded initiatives which would provide the most enriching environments possible for those with dementia living in residential care facilities, environments which would honor the personhood and life stories of persons with dementia, support their autonomy and mastery over their life situation, encourage creativity and the discovery of new talents, and validate them as human beings with innate dignity that cannot be stolen by any disease?
The mirror of dementia has shown me a reflection of myself I would rather not see. In many ways, I and the society of which I am a member are failing the challenge dementia has presented. How will I respond?
My hope is that I will take note of what I’ve seen, do some serious soul searching, and bring back my best for another look into at that revealing image.
This time, I hope I do see Dad looking back. And I hope he tells me something like this:
Remember who you are, my child, who you were born to be.
Let love be law in mind and heart, let life be charity.As bandaged, begging hands assail your palisades of calm,
let labor bring tranquility, let healing be its balm.When death itself so stealthily advances through your days,
let quiet faith be your resolve, let living be your praise.And though my spirit and my flesh un-knit, and I am gone,
within your heart the finest part of me continues on.
There’s nothing magical about a mirror like that. But there is something very vital and true.
You and I have opportunities to respond to the reality of dementia by making choices that will effect meaningful and productive change. Some examples include calling on Members of Congress in support of funding dementia research at the National Institutes of Health and support services such as those provided by the Older Americans Act; submitting comments to the White House Conference on Aging website; becoming a grassroots advocate through USAgainstAlzheimer’s, the Alzheimer’s Association, the BrightFocus Foundation, or another group of your choosing. You or your family members might consider supporting early detection through the Alzheimer’s Foundation of America’s National Memory Screening Program, joining the Alzheimer’s Prevention Registry or the Brain Health Registry, or enrolling in clinical trials, sharing your stories via social media advocacy groups such as Memory People, organizing community partners to develop dementia day and respite programs in your community, or a host of other possibilities. The bottom line is that you can choose your response to the challenge dementia poses to all of us. Will you join us?
Daniel C. Potts, MD, FAAN is a neurologist, author, educator and champion of those with Alzheimer’s disease and other dementias and their caregivers. Dr. Potts is currently Attending Neurologist at the Tuscaloosa Veterans Affairs Medical Center. A Fellow of the American Academy of Neurology, he was chosen by the AAN as the 2008 Donald M. Palatucci Advocate of the Year, and has been designated an Architect of Change by Maria Shriver and blogs monthly on her website. A Pocket Guide for the Alzheimer’s Caregiver (www.alzpocketguide.com), written by Dr. Potts and his wife, Ellen W. Potts, MBA is recommended as a resource by the AAN, the Alzheimer’s Association, and Maria Shriver. A clinical faculty member at the University of Alabama College of Community Health Sciences and the University of South Alabama College of Medicine, Dr. Potts also holds appointments in the Honors College and the Alabama Research Institute on Aging at The University of Alabama. Dr. Potts is co-convener and medical advisor of the ClergyAgainstAlzheimer’s Network, and is Editor-in Chief of Seasons of Caring, a multi-faith tradition collection of meditations for dementia caregivers.
Inspired by his father’s transformation from saw miller to watercolor artist in the throes of dementia through person-centered care and the expressive arts, Dr. Potts seeks to make these therapies more widely available through his foundation, Cognitive Dynamics (www.cognitivedynamics.org). Additionally he is passionate about promoting self-preservation and dignity for all persons with cognitive impairment. He lives with his wife and two daughters in Tuscaloosa, Alabama.
Founder and President, Cognitive Dynamics Foundation
Medical Director, Dementia Dynamics, LLC
Linked In – http://www.linkedin.com/in/danielcpotts
Twitter – @DanielCPotts
Facebook – https://www.facebook.com/daniel.potts.92372
Blog – http://mariashriver.com/blog/architect/dr-daniel-c-potts/
Disclaimer: The views in guest essays are those of the authors and do not necessarily reflect the views of the LEAD Coalition.