By Mary Rourke
I was particularly touched by Kathy Berken’s Aug. 10 column, “An old friendship and utter transformation,” since I’m experiencing a bit of that right now.
Mary Rourke, right, with her sister Jane.
My sister, Jane, who has Down syndrome, also has some dementia with a rapidly declining loss of memory. God willing, she’ll be moving to a more secure group home soon. We have many wonderful memories of things she’ll never be able to do again because of her memory and physical changes as well. A change in routine upsets her and any suggestion of overnight visits or lengthy travel causes anxiety. Nancy Reagan called Alzheimer’s “the long goodbye.” I can relate.
Despite the sadness — and even the grief of looking down the darkening road of Jane’s life — joy, love and gratitude remain. The thing not yet forgotten (besides her unabashed passion for the Hawkeyes!), the most important thing, is her uninhibited affection for family and friends/staff.
Our other sister and I toured Jane’s future home and I was blown away by the nursing staff’s total commitment to understand and address our sister’s unique needs and abilities. They oozed empathy and compassion combined with practical, professional knowledge and experience, what St. Pope John Paul II termed “the genius of women.”
Perhaps because of her Down syndrome, my sister has a large circle of support in her declining years, for which I am grateful. In my current volunteer work delivering food to meal sites and food pantries, I encounter those who serve the hungry and the homeless, people on the margins, like Jane. As a letter carrier, I knew of elderly people who lived alone like Kathy Berken’s friend, people who suffered death or disability from a fall, who weren’t discovered for days.
I think we tend to forget that those on the margins have needs as or more important than physical things. I grew up poor in the 1950s and ‘60s. For me, the material deprivation was far less important than the lack of friends. That’s why those I speak with at meal sites express gratitude. To borrow a phrase from my missionary uncle, “they share ‘a bit of their souls’ with me. It astonishes me. It humbles me.”
We have to pay attention, to really look and listen to the least of those among us.
(Mary Rourke lives in Davenport.)
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Mary, Thank you so much for your kind words. I hope for the best for you, your sister Jane, and your family.
Perhaps you already know that I lived and worked at The Arch, a L’arche community in Clinton, with people like your sister. It’s a wonderful place!
All the best,
Kathy Berken