Dr. Al Power, the author of this quote, is a geriatrician, author, educator, and composer/songwriter.
In his role as an international educator, he is a strong advocate for the restoration of dignity and comfort while helping those living with dementia to flourish.
He is the author of two books, including Dementia Beyond Drugs: Changing the Culture of Care – Second Edition (2017) and Dementia Beyond Disease: Enhancing Well-Being – Revised Edition (2017).
His publications offer humanistic models of care for those living with dementia and their care partners. In this discussion, he includes the shift from “institutionalization” to “deinstitutionalizing care environments” and asks, “Can we achieve drug-free care?”
As educator, activist, and advocate, he is a leading spokesperson for changing the culture of dementia care.
His message resonates deeply with my experience in care-living with my elder parents beginning 20 years earlier. Mother’s diagnosis of Alzheimer’s in 1997 preceded my father’s diagnosis of vascular dementia in 2001.
With the help of teams of carers over the years, we navigated a road less travelled. Launching our intergenerational living experience in the late 90’s, our being together at the ranch challenged all of us to continue to grow.
It was the care partnering season of my lifetime – a whole new, more intimate realm of caring after serving in helping professions during my entire career.
We frequently called upon an essential reserve of resilience to be able to “adjust course” in this alternative lifestyle. No two days were the same. We were constantly evolving, growing, and becoming.
Why did this one statement in the meme by Dr. Power resonate especially deeply with me 20 years after beginning our intergenerational lifestyle?
It was on Day Two of Mother’s diagnosis – when I finished crying and had no more tears left. I remember saying to my sister Bets: “We give up too quickly. We have no idea how well Mother could do if living in a safe environment, surrounded by caring people.”
To me – learning is spiritual
When I arrived on the scene, I knew nothing – or very little – about what would be different when caring for loved ones with dementia. I came on a wing and a prayer – and with no agenda following Dad’s call. I did not want any preconceived notions about dementia to influence me. Would the level of “caring” really be so different than their last visit to my Chicago apartment? They had always loved their visits and were a joy to host.
I was ready to listen with eyes, ears and all my senses to what our parents would tell us. My mantra was, “It’s about dignity.”
I was able to witness in an upfront and personal way the significance of what Dr. Power has described in this one succinct sentence.
People living with dementia DO LEARN.
Miss Ethel, ABeautifulVoice (my mother) is such a remarkable example of “learning.” We sight-read tons of music singing together at the piano – some of it leaning towards “challenging.” We especially liked spirituals, Broadway show tunes, gospel with a slow beat, and jazz with irregular beats. I still carry with me all the books marking hundreds of “favorites” with a red tab. And each time we came back to one of those favorites, it was like something from her past. She was able to articulate the words in music for roughly 13 years. It was in her final year that the words became muffled – or she sang in monosyllables – but she still had the music within her! She moved with it! She breathed it! She owned it!
A quick note to acknowledge differences among people. I have been told, “When you know one person with dementia, you know ONE person with dementia.” I believe this to be true.
My father was tone deaf when it came to singing. When Mother and I were at the piano, he would be reading close-by. It was not unusual to see him tapping his toes. He had always supported and applauded our involvement in music events.
His favorite gig was going for a drive – and we did it frequently. Care partners drove him during the week, for as long as Dad was able to go out. Shopping. Driving through the rolling hills around the ranch. Stopping to see relatives. Having farmed for many years, they both enjoyed checking the progress of the crops in the fields.
On weekends and holidays, I was the driver by default. On one occasion when my father wanted to “go to Danvers,” we set out in that direction and ended up finding the farmhouse in which he was born. A retired university professor and his wife now lived in the house and graciously invited us in! Needless to say, it is a memory which I treasure. Dad was so content – and ever so pleased as he sat next to the room where he was born.
People living with dementia DO GROW.
How do I count the ways?? It would take a couple volumes.
People living with dementia ARE ABLE TO GIVE CARE AS WELL AS RECEIVE IT.
Mother, the first to be diagnosed (Alzheimer’s), became part of the care team when Dad’s status declined more rapidly than hers. She was there – and she was involved! A couple nights before his passing, she held him close and said tearfully, “I don’t think you will be with us in the morning.”
It is possible that a hospice nurse may have told her that. I do not know. But several hours following the departure of the hospice nurse that day, Mother was stating it to my father later in the evening. She was off – by only two nights.
Thank you, Dr. Power, for articulating this succinct message which has the power to transform minds. It is a starting point for new possibilities.
Dr. Power’s books on Amazon:
- Dementia Beyond Drugs: Changing the Culture of Care – Second Edition (2017)
- Dementia Beyond Disease: Enhancing Well-Being – Revised Edition (2017).
Meme image approved by: Al Power, MD
Posted by: Susan Troyer, MS, BA
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