“When you think of yourself, what do you see?”
That is the question I asked my father in his later years, before Alzheimer’s had set in.
“I see myself at 30, energetic, with my whole life ahead of me,” he responded. “Then I look in the mirror and see my father.”
The ego tends to construct its own version of reality, which may diverge from the truth. Sometimes a glance into the various mirrors of life can shock us into the real world. These reflections often more closely resemble the truth than the images we hold internally.
Here’s a fundamental question: Do I approve of the reflection I see? What truth is it showing me? Will my response be healthy or maladaptive? Will it promote meaningful change, complacency, or resentment and anger?
Dementia represents a mirror for us as individuals and for society, itself. This reflection is a judgment. Are our most noble ideals visible? Do we have the highest standards of ethics? Do we see love, compassion, empathy, inclusivity and advocacy looking back at us?
For me, dementia’s mirror has been an effective teacher. With my parents’ retirement, I envisioned carefree days with grandparents and children at play, and sunset years of their marriage spent resting in grateful reflection. Then the radioactive reality of Alzheimer’s melted down the core of our world. How would I respond?
With denial, unfortunately. And guilt, remorse, fear, resentment, and self-pity. Though these are feelings commonly experienced by caregivers, these aren’t the reflections of myself I would hope to see.
This is certain: All of us eventually will either be caregivers or persons with dementia; some will be both. I can’t conceive of what it would be like to have dementia. But I would do well to seek out those brave souls who are sharing their struggles; to develop relationships with those who are living inside this world of distortion and unfamiliarity. Perhaps then I can cultivate empathy that will fuel advocacy to effect positive change, produce greater awareness and lessen stigma.
Having faced the challenges and grieved the losses so keenly felt, I should take what my family and I learned through the experience and help others on the same path.
I should explain to them the importance of acceptance; of making a decision to love as deeply as possible in spite of the losses, the hurts, the cutting wound of the unknowing. I should tell them of the spiritual growth that is possible in this hardship; of the importance of setting one’s mind to practice gratitude daily, to enter as fully as possible into the world of the person with dementia, using all of one’s powers to maintain the relationship.
And I should urge them to love and care for themselves in the process. Otherwise, they may not make it.
If I had looked into the mirror of dementia early on, I wouldn’t 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.
When I pass by a mirror these days, I see my father 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?
Have I offered to sit with persons with dementia so that their caregivers can get respite?
Have I volunteered to transport persons with dementia to their medical visits?
Have I given time and money to agencies that advocate for a cure, treatment, or caregiver resources?
Have I spoken with members of Congress to advocate for increased funding for research and caregiving services?
Have I taught young people to respect their elders and people with disabilities?
Have I avoided speaking to a person with dementia or a caregiver because I was afraid I wouldn’t know what to say?
Have I listened to a caregiver sharing his/her story?
Have I judged persons with dementia as being no longer present and withheld the kindness of acknowledging them?
Has my society confronted the plague of ageism, which marginalizes elders to its detriment, depriving us and our children of their wisdom and relational maturity?
Has my society developed and funded programs that provide education about effective dementia prevention?
Has my society developed and funded programs that would provide resources and education to underserved populations struggling with dementia?
Has my society developed and funded the creation of dementia-friendly communities?
Has my society developed and funded initiatives that would provide the most enriching environments for those with dementia, honoring personhood and life stories, supporting autonomy, encouraging creativity and the discovery of new talents, and validating their innate dignity?
Dementia has held up its mirror, and I’m not pleased with the reflection that I see. How will I, how will we, respond?
This is my hope: that I will do some soul searching and bring back my best for another look into at that revealing image. I hope to see Dad looking back, telling 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.
This essay originally appeared in the LEAD Coalition Newsletter.