By Stephen Bowman
June is Alzheimer’s Awareness Month, and as a care provider the past 25 years, I find it to be very bittersweet. Yes, of course, I am grateful to the Alzheimer’s Association for their efforts in education and compassion. But for most of us, the seeming prolonged morbidity for our loved ones takes a devastating toll on millions of our families. It is estimated that if a spouse is diagnosed with Alzheimer’s, the healthy spouse is six times more likely to develop dementia. This is not because it is contagious, but because it is so profoundly depressing and debilitating.
In my experience, it seems that for many, once an individual with Alzheimer’s no longer recognizes their children, they are seen as a mere husk of themselves, and families often leave and pray for death, often years before the actual event. I am afraid that this has less to do with a lack of love than understanding.
In an effort to foster some renewed strength and hope for afflicted families, I offer some observations that I have made over the years regarding the actual condition and experience of those living through the progression of Alzheimer’s. What is really happening inside their minds?
The Soul Does Not Age
My first point is that the soul does not age. By that, I mean that no matter my age or decline in my short-term memory, we never lose the essence of who we are and forever will be.
I was reminded of this fact in a recent conversation with an elderly Greek resident who reminded me that while her body was old, her mind was full of youth. Or the statement of the French writer Andre Gide that his “heart remained so young that I have the feeling that I am merely playing the part of a 75-year-old man”.
My point is that, regardless of our ability to walk or speak, we never lose sight of ourselves. And if I remain present to myself, I can remain present to my family as well, but only if they are searching.
We Remain Connected to the World
My second observation is that those experiencing Alzheimer’s always continue to live in, and experience the world. All sentient humans continually live in time and space and remain connected emotionally to those around them.
Think of it, close your eyes, and try to imagine time stopping or nothingness. It can’t be done. Our brains are hard-wired for time and space. And as to our emotional connection to those around us, I was recently reminded by one of our aides here in Syracuse, that though her residents don’t know her name, they do remember her touch.
Memoirs and journals of those living through Alzheimer’s are replete with examples that though they are living with strangers, they clearly recognize who is kind, impatient, or dismissive. They continue to feel love.
This truth came to me clearly when I was visiting a very dear old friend that I had spent decades with working in business and politics. When I saw him last, I walked into his room and immediately gave him a big hug and a kiss. But on stepping back, I realized that he had no idea who I was. So we sat and I began telling him stories of our adventures and some of our ridiculous misadventures. But we were soon chuckling and laughing, and I came to appreciate that though he did not recognize me, he knew that I loved him. We both wept.
Our Mission for Care
My final observation about Alzheimer’s, which I arrived at after years of trial and error, speaks to the purpose and aspiration of what our care should look like. Is it mere safety and cleanliness? Stimulation or gentle comfort? No. For me, I believe that the purpose and goal for meaningful Alzheimer’s care is to help those afflicted maintain a connection to themselves for as long as possible.
This is our great fear of Alzheimer’s. We are afraid that as we lose memory of our family, we will eventually lose ourselves. This is precisely what Frau Deter, Dr. Alzheimer’s first patient told him — that she was losing herself.
So the question is, how do we maintain a connection to ourselves in the face of a disease that destroys short-term memory? The answer is through one’s long-term memories. Rather than just playing bingo, we should review photo albums, listen to old-time music favorites, and write biographies that can be read back to them. Particularly powerful we find, are religious readings and services. After all, what memories could be more powerful than our formative religious memories for providing comfort, reverence, and purpose?
My belief is that once we embrace the humanity of those living through Alzheimer’s, we can create happiness, meaning, and peace for our loved ones. If we are to move beyond institutional care, family abandonment, and the terror of prolonged morbidity, we need to recognize that the individual identities remain, emotional connections endure, and that joy is still possible if we embrace our beloved’s past.