- By: Candace McKibben
I scanned the room looking for my mother. The lights were off as the activities director was showing a film and it was difficult to spot her. I decided she must be in her recliner in her room where she enjoys napping, but when I checked she was not there. I looked again among the movie audience and realized the woman whom I had dismissed as my mother was in fact, her. She was napping in the straight-back chair, hunched over and looking as if she had aged years since I kissed her goodnight the evening before. Maybe it was the dim lighting, but I suspect it was rather a moment of clarity. In that moment, I saw my mother as the nearly 91 year-old woman that she is, worn out by mid-morning from doing little.
She doesn’t always appear that way to me, of course. Just the day before, after we sat outside on my back porch, drank ginger ale and reminisced about her love of swinging when she was a child, I asked my mom if she wanted to swing. “Oh, no, I guess not,” she said with conviction. But when we walked past the swing hanging from the oak tree in the backyard, she said, “Look there’s a swing.” I nodded and asked her if she wanted to swing. “I think I do,” she said. And much to my delight and hers, she did!
This week, I attended the first U.S.-Canada “Re-Imagine Life with Dementia”Conference in Atlanta, Georgia. The intent was to inspire conferees to help create a society where dementia symptoms are better understood and accommodated as a disability and where individuals and families with dementia are fully supported and included in all matters that impact them, including clinical practices, research, and public policy. Offered by the Dementia Action Alliance, I was deeply moved by what I experienced.
The conference program included a paragraph about accommodations, including turning off the escalators to reduce noise, the provision of yellow tape arrows on the carpet for directions, and the instruction to presenters and conferees to slow speech to make processing what is being heard easier. The thirty-three persons with early on-set dementia who were presenters and participants had signs to hold up for slower speech or reduced noise. They were recognized as the experts on dementia.
The keynote speaker was a person living with dementia, and the theme song for the convention was composed by someone living with dementia. Hearing these courageous men and women share what it is like to live with dementia was both enlightening and inspiring. Proclamations like, “I have Alzheimer’s but it doesn’t have me” and “I dream of a time when there is no stigma about having dementia and no stigma about the disease” coming from the lips of those experiencing the disease was powerful. Their vulnerability was remarkable, sharing how depressed they became upon diagnosis and how they had to find a way to tap into their inner strength to get busy living. A repeated theme was how they longed for meaning in life and how they found that meaning in advocacy.
A retired pharmacist living with Lewy Body dementia shared that people with dementia are problem-solvers who use their intelligence to compensate every day, learning new pathways to accomplish life tasks. He encouraged helpers to not worry as much about orienting to time and place as to purpose. A retired college professor living with dementia is using her advocacy to encourage the United Nations to recognize dementia as a disability, which will guarantee rights that are currently being denied persons with this diagnosis. A retired therapist of forty years is using her newly discovered talent in pottery to shift the perception of what persons with dementia are capable of achieving. A neurologist whose father had dementia is making the same point in a book of paintings that his father created, picking up a paintbrush for the first time after his diagnosis.
Persons living with dementia taught us they have a shift in the way they experience the world around them but they are not intellectually-challenged or reduced to the mental level of a child. We do well to remember for them the essence of who they are and what they value. Rather than focus on what is missing for them, they long to be encouraged in whatever it is that brings joy and meaning.
It validated for me how sacred my mother swinging in a backyard swing truly is for both of us. Seeing my mom who lives with dementia beyond her limitations matters.