Caring for a loved one with Alzheimer’s is ominous. Caregivers may grumble about the situation, but this is primarily based on the cognitive loss of a person who is still present.
The mind is amazing; even more amazing is when it exists but no longer functions. My sister Marilyn and I were talking about our sister Carole and the strange emptiness of her eyes.
She saw them as wild; I viewed them as lost. We both wondered how a facial feature that sparkles can produce such a void. Even when we coerced Carole into laugher over silly phrases, her eyes remained veiled.
Many of you recall the story of Carole and the shoe shop. The lady who waited on us acted patient at first, but she became frustrated when Carole could not comply with demands like, “Stand up!” “Sit down!” “Unbend your toes!”
After several minutes, she insinuated an emergency and exited the scene. Background mumblings led us to believe that she was quite done with us and soon a young salesperson emerged. He understood Carole’s fear and confusion as he coaxed her foot in for a perfect fit. While I deemed our first salesperson as rude and uncaring, Marilyn acknowledged her fear – fear of a mental state that she did not/could not understand. This gentle insight from my sister increased my minimal compassion for this woman.
In my Sisters Book Club we are reading Making Rounds with Oscar. This is the same book that Debbie Stone and I will be reviewing soon. It characterizes empathy and kindness for those that we do not fully understand. Set in the Alzheimer’s ward of a nursing home, Dr. Dosa, the author, describes his clients and their families. It seems that every imaginable family situation is covered – from confusion, anger, denial, and acceptance to moving forward.
His words will touch the heart and soul of every reader. Some people run and hide while denying clear changes in mental capacity; others learn to embrace the present and make the best of a difficult condition.
An AARP representative quizzed the author about the book with the question. “For what age group is this book appropriate?” One individual responded to Dr. Dosa that a minimum age of 14 felt right.
Why? Because children “won’t understand” and because the book mentions a “conjugal visit” (no details included). I have to disagree. In my experience children are perhaps most kindhearted with someone who is “different”. They are curious, but in a good way.
My great niece and nephews wanted to help Carole, regardless of the task: changing her shoes; combing her hair; helping her shower.
Not once did they see our work as scary or bad. They just shared their goodness.
Off of dementia and on to caring for others. We celebrated my sister Jackie’s 80th birthday (16 months late due to COVID) in Monterey. Because of knee problems, she is in a wheelchair – actually a transport chair. It sounds easy to push some around on wheels but her chair proved to be almost too much for me. It stuck on the threshold of the hotel room and a maintenance man had to “unstick” us; descending a hill from the parking garage to the Aquarium became treacherous as I slammed on my shoe brakes and tried to put the chair into a stall. Struggling, a lady approached with, “You’re scaring me” and she grasped a handle to prevent a crashing descent onto the street below.
An Aquarium employee guided us to the “Members” entry so we could avoid another hill and long line.
This same guide helped us later after we had bounced across the street only to get stuck once again between the lip of the sidewalk and the asphalt strip separating the street and gutter. After lunch we headed back to the car and guess what?? Uphill. Now you might contradict me by stating that Monterey is flat, however, there are inclines and we found them.
I doubled up my power and shoved hard; Marilyn joined in with a fierce push on Jackie’s back. Halfway up Marilyn muttered, “I hope some nice person helps us soon.” And sure enough it happened.
A couple heading downhill, paused and assisted us as we went up. Once a flat surface, we crossed the street and huffed into the garage, bumped onto the elevator, and then to the car. Out of these crazy experiences we recognized, “There are kind people in our world!”
