An ad by the Alzheimer’s Association soberly reminded readers, “We'd show an Alzheimer's survivor here, if there were one.” That message would be even more onerous if it were not for another side of Alzheimer’s disease if we are alert to it.
By J. Michael Steinhardt
That is how long it has been since my sister was diagnosed with “adult onset dementia” at age sixty-six.
I have long since given up trying to fathom the affects of the disease. After all, even medical experts on the disease are still search for a specific etiology.
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In my role as a caretaker, however, I struggle in coming to grips with the angst the disease imposes. Regardless, my Christian faith teaches to accept adversity and to find God’s will in all things good and bad affecting myself and others. In this context, I have given some thought to “another side of Alzheimer’s,” but for caretakers.
My own journey in this regard has been influenced by time spent with my sister and the other residents of the facility where she now lives attended 24-7 by a staff skilled and attentive to their within the confines that is now their world. It derives from my watching each struggle with their own varying and aberrant manifestations of the disease and the pace at which it consumes them.
In the absence of medical or scientific measures, we are left with observing a gradual process of decline in performing simple things we do without thinking about every day. We become familiar with these activities of daily living (ADL’s) like dressing, feeding, maintaining continence and bathing become increasingly difficult and eventually impossible. And we try to separate these from the normal aging process.
In addition to the functional measures we are left with, we also take notice of other problems like confusion, memory loss, personality changes, paranoia, and problematic behavior and personality changes among other things. These advances are unpleasant and imprecise to observe, frustrating to deal with, and often awkward and difficult to discuss except with other caretakers.
As difficult as it is to observe the affects of Alzheimer’s disease second – remember that first hand experience is from a patient perspective and not relatable - there is another side. Caretakers are usually able to experience and identify them when they occur and are reassured when they are observed.
They take the form of things like noting the light in their eyes on better days; fleeting and minimal recollections forthcoming of time and people in their past; a calm that is transmitted by holding their hands or gently rubbing their back; innocent and often humorous comments patients offer unvarnished and unintended; their enjoyment of the simple of things like cup of coffee or a dish of ice cream; appreciation of the most perfunctory of events like a trip to the doctor or lunch outside the confines of the only home they know; a sometimes ecstatic excitement when younger children or people, and sometimes pets, who visit them and other residents; or the inexplicable joy expressed on their faces at special occasions like the holidays or maybe a birthday lunch.
This ill-defined “other side” of Alzheimer’s disease often comes to caretakers from frequent time spent regularly with patients.
From this experience and sharing it with other caretakers, I have a new or rekindled appreciation of the fragility of all life; the impersonal randomness most disease uses in selecting its victims; remarkable people who accept their new found role as if they had been doing it all their lives; how disorder and pain are an integral part of the cycle of life for everyone; the constant presence of God that exists in all our lives and in a special way those entrusted to us; a transition in thinking about the difference between sympathy and constructive empathy; and discovering a healthy, and sometimes almost indignant, defensiveness of the rights and privileges owed the people who are totally dependent on others.
In the final analysis, Alzheimer’s disease is what it is. Because it is incurable, treatment with specific medications is most often palliative and focused on assisting patients in being more comfortable.
A recent ad by the Alzheimer’s Association soberly reminded readers, “We'd show an Alzheimer's survivor here, if there were one.” That message would be even more onerous if it were not for another side of Alzheimer’s disease if we are alert to it.
More Insight and Advice from the Alzheimer's Reading Room
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- What is Dementia?
- What’s the Difference Between Alzheimer’s Disease and Dementia
- Communicating in Alzheimers World
- How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You
- Learning How to Communicate with Someone Suffering From Alzheimer's Disease
- Alzheimer's World -- Trying to Reconnect with Someone Suffering from Alzheimer's Disease
- About the Alzheimer's Reading Room
Original content J. Michael Steinhardt, the Alzheimer's Reading Room