Near the end of the time during which my youngest sister, Harriet, was able to adequately communicate, she called me every weekday afternoon at exactly the same time from her seat in the van going home from adult day care. She got off the van at Sunshine Market for her husband to take her to their home in St. Helena, California.
Harriet’s dialogue was as if it were recorded: “I had a good time today. Everyone was so nice. We sat in our chairs and exercised. Now I need to take my Namenda.”
Namenda is a medication used to treat the symptoms of dementia. It is not a cure; rather, it brings the hope of improving memory, awareness and mental functioning. Notwithstanding, Harriet continued to slip into an incomprehensible world. She was in her late 50s when it was discovered that she suffered from frontotemporal lobe deterioration, or early onset dementia.
Harriet is our youngest sister. She has four older sisters and a younger brother. As a child she was the darling of our family. We dressed her in wigs and costumes so she could entertain us by dancing and singing. Also, Harriet was rebellious. After the early death of our mother, Harriet dropped out of high school and became a bartender in Key West, where she wore floppy hats and sundresses and befriended Jimmy Buffett at the bar where she worked.
In her mid 20s she married and moved to the Napa Valley, where she raised two children and enjoyed a robust career in the hospitality side of several high-end wineries. Her light blue eyes, her beauty and her engaging personality captured everyone’s attention. Yves Saint Laurent’s Opium perfume trailed wherever she went. She loved to work out at the gym and enjoy the hot baths in Calistoga.
When I moved to Maine 19 years ago, Harriet came to see me regularly. I started to notice changes in her behavior. The enormously difficult part of being in a relationship with someone who has the diagnosis of early onset dementia is that you don’t see the illness. You just see the difference in how they’re acting. This includes lack of inhibition, bad manners, poor judgment, impulsive behavior, overspending and much more. Fortunately, Harriet’s husband observed these behaviors and took her for a mental workup, which revealed the condition.
Today she lives in Austin, Texas, and she is blessed to have caring adult children who visit her regularly in the nursing home along with their families. Harriet does not have many, if any, verbal skills left, and her ability to enjoy life is highly impaired.
I live 2,000 miles away, and it breaks my heart to be so far away. What I would give to have one more of her sisterly talks, which always left me laughing and a little wiser. What I would give for one more of those phone calls on her way to Sunshine Market. What I would give to see my beautiful, exciting sister as a healthy and mentally vibrant person.
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