“Cobwebs in my mind,” was Mom’s depiction of the disease. It was her answer to my question of what it felt like to have dementia. That image remains seared into my heart to this day.
Here are a few more descriptions of others’ experiences living with dementia. Dr. Richard Taylor was a psychologist and founding member of Dementia Alliance International. He passed away in June from cancer. Dr. Taylor described his illness as a veil, a curtain hanging over the window of his world. “Right now, I feel as if I am sitting in my grandmother’s living room, looking at the world through her lace curtains…There are large knots in the curtains, and I cannot see through them.” (Alzheimer’s from the Inside Out)
In her book, Dancing with Dementia, Christine Bryden, dementia survivor, and advocate for the rights of those with dementia, writes about how dementia might look to others. She uses the image of a swan, serene and calm on the water’s surface. However, its legs are
paddling a thousand times faster underneath the surface to make things “look okay” to others.
Kate Swaffer, Australian author, another dementia advocate, and a blogger, was diagnosed with semantic dementia while in her forties. She describes her illness this way: “My thoughts fly around inside my head like helium balloons high inside an auditorium.”
I was blessed to be the family member who was Mom’s primary caregiver for three years, following Dad’s sudden passing in 2003. In caring for her, I tried to imagine what living with the disease was like. A favorite fictional character of mine, Atticus Finch, says it so well in the book To Kill a Mockingbird: “You never really understand a person until you consider things from his point of view…until you climb inside his skin and walk around in it.” Like so many of you reading this blog, I was not “just” a care partner. I became Mom’s companion and advocate, attempting to help make her journey through the disease easier, to minimize her suffering as much as possible. My caregiving turned into a pilgrimage, a spiritual journey of the heart and soul, bringing me closer to my parents, my family, and discerning my values in life.
In those years when I took care of Mom, there were not as many resources as there are today. I promised myself that if I ever had the opportunity to share my experiences to assist families like mine, then I would do so. “All sorrows can be born if you tell a story about them,” writes Karen Blixen. My memoir, Elegy for Mom, a Memoir of Family Caregiving, Alzheimer’s, and Devotion, is the result of that promise.
Author Natalie Goldberg advises those who write memoirs: “Write what disturbs you, what you fear, what you have not been willing to speak about. Be willing to be split open.” I attempted to write what I feared and what disturbed me, but also what blessings I discovered along the journey. If this book will help even a few families who read it, then it will have achieved its purpose.
The official publication date of my memoir is November 7, my birthday. My book is now available for purchase through this website. I offer it in tribute to my parents, Sophia and Frank, who continue to inspire me as I travel on this pilgrimage called life.
I wish you peace, patience, compassion, and courage in your caregiving today and everyday!
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I am an admirer of Kate Swaffer and follow her blog, “Creating Life with Words: Inspiration, Love, and Truth.” A few years ago she made a two-minute video of her feelings shortly after being diagnosed with semantic dementia. You can watch her video “Kate Swaffer – Dementia: My Story,” here: https://youtu.be/9ZUyIRq5DAs .
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The inspiring background music to Kate Swaffer’s video is one of my favorite concertos, Rachmaninoff’s Third Concerto. My parents fostered my love of classical music. Here is the great pianist Vladimir Horowitz performing in concert in New York, 1978. The orchestra is under the direction of Zubin Mehta: https://youtu.be/D5mxU_7BTRA.
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Dr. Don Hayen is a retired doctor and former medical director of an HMO. He was diagnosed with Alzheimer’s disease in 2005, at age 71. Over the past two years, Don has coped well with the disease — so well he’s been unable to meet the requirements to take part in clinical trials of experimental Alzheimer’s drugs. But his wife, Jane, noticed his decline. Listen to what he has to say about the importance of getting an early diagnosis: https://youtu.be/uAlkCMfTASQ.