Guest article by Lynette Juul
In a waiting room recently, I picked up the latest issue of Neurology Now. After reading the cover story about Glen Campbell’s battle with Alzheimer’s disease, I became captivated by Susannah Gora’s article, “Showing Up as Michael J. Fox,” about the actor’s life with Parkinson’s disease.
What impressed me most was a quote by Mr. Fox, describing how he wants his character to be portrayed in his new TV series. “Whatever you do, write me joy, because I play joy well. Not that I can’t experience sadness or desire, or whatever. I’m just most at home in joy.”
Wow! The positivity of his attitude in dealing with a cognitively impairing disease is inspiring indeed!
My own experience with Parkinson’s disease (PD) deals with my Grandmother, Rose Ancillotti. An outspoken woman with a vibrant personality, Grandma was initially diagnosed with PD in her early seventies. Her symptoms developed gradually, and for a while, Grandma was as outspoken and vibrant as always! Except that her hands and head began to slightly shake all the time. And her handwriting grew increasingly difficult to decipher.
By the time Grandma was eighty-five, her Parkinson’s
symptoms had become a safety concern, so she hired a part-time aide to accompany
her wherever she went. Happily, one of those places was my wedding, where
Grandma, dressed in her finest, garnered far more attention than I!Perhaps the most beautiful part of the day was our dance together. I chose the song, “The Rose,” not only because it is Grandma’s name, but also because she had always been my best friend, often the only light at the end of a very dark tunnel.
Five years later, my mother planned a ninetieth birthday party for Grandma. At this point, she was still living in her own apartment, only now with a full-time aide to ensure her safety. Although Grandma’s PD had reached a much more severe level, her charismatic essence remained quite strong.
The celebration was wonderful, and Grandma beamed among
relatives and friends, many of whom she hadn’t seen in years (probably since my
wedding!). She was definitely the belle of the ball, her smile lighting up the
room. I will never forget the site of my nephew, Patrick, and my son, Peter,
both three years old, sitting beside Grandma eagerly waiting for her to cut the
cake!Watching the children interact with Grandma was an absolute delight! At their age, they could care less that Granny shook all the time, forgot simple things, and needed help walking everywhere. They simply enjoyed having her around! The feeling was quite mutual.
When Grandma was ninety-one, another great-grandchild
entered her life when my niece, Jaclyn, was born. Although her PD symptoms had
become quite debilitating by this time, holding a new life seemed to bring a
renewed joy to Grandma’s own life. Here essence was very clearly visible.All that changed a year later when my family faced an excruciatingly painful decision. Now a constant fall risk, even WITH a full-time aide to assist her in ambulating, Grandma’s safety could not be ensured at home any longer. My mother, sister, and I visited several nearby skilled nursing facilities, and chose one that we thought would provide the best overall care for Grandma.
My grandmother was then permanently placed in a nursing home.
The next two years were truly tragic, as my once vibrant and outspoken grandmother turned into a mere shell of a human being. She couldn’t talk, walk, or even eat. During our visits, she didn’t seem to know we were even there. And the children didn’t want to visit their granny that way.
Finally, at the age of ninety-four, Grandma’s strong heart stopped beating. She was at peace, her long battle with Parkinson’s disease over.
Ten years later, my family continues to take great comfort in Grandma’s essence, which is quite clearly present at every holiday or family function. I treasure every single crooked card and note that she ever wrote me and find great joy in the many photographs of her and the children that she so adored.
As a family, we choose to embrace the wonderful times we had with our ever-blooming Rose, remembering her true essence rather than her illness.
For a helpful and comprehensive listing of websites that provide additional information about various cognitive impairments, including Alzheimer’s and Parkinson’s diseases, please go to the Resource Central section of Neurology Now.
Lynette Wilson Juul, MS is both a family and
professional caregiver. For twenty-five years, she assisted people with
disabilities. During the last decade, she has helped families who have a memory
impaired loved one, including her own father-in-law, Ole Juul, who has dementia.
Although Lynette lives in New York with her teenage son, Peter, they often
travel to the Bay Area of California, where Ole and Peter’s Dad reside, to help
with his care.
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