I watched my favourite show with a sinking heart.
Rebecca, a widow and the mother of grown triplets, lost her phone and became unreasonably flustered. She mentioned that Miguel, her second husband, had just replaced this phone as she’d lost its predecessor. In the next scene, she goes shopping and can’t find her way home.
A few shows and an MRI later, she is diagnosed with early stages Alzheimer’s.
For those of us who are This Is Us addicts, the plot twist cuts deep. I love Rebecca, and I understood some of the decisions she made throughout the seasons based on fear. They were wrong and had far-reaching repercussions, but I understood. I’d made the same wrong decisions at points in my life. Then her son, Randall, discovers a 10-month clinical trial in far away St. Louis and starts to pressure his mom to consider this. “Research shows people with Alzheimer’s in clinical trials do better than those who aren’t,” he says. I want to stand and cheer when Rebecca declares she has decided to spend whatever time is left enjoying her family. She won’t go to St. Louis. She made a firm decision.
The look in Randall’s eyes haunt me, and sure enough, he has an off-screen discussion with her and she changes her mind. She will go because “it’s an investment in her future” words we heard coming out of Randall’s mouth.
My blood boils. Randall’s character has always been one of my favourites, but at this moment I am furious with him. He declares he is looking after his mom better than anyone else in the family. I want to slap him.
Why is Reciprocal Care So Hard to Understand?
Randall couldn’t conceive that his mother, with her new diagnosis of Alzheimer’s, could make a rational decision, let alone a right one. The thought that she was still able to give care as well as receive it would seem ridiculous to him. He put on the role of the caregiver as thoroughly as his long, grey coat and he wanted to fulfil it perfectly like he did everything else.
Randall’s flawed thinking is common to so many of us. We think we are God, and then we take charge of all the decisions. God gives us free will, but in a caregiving role, we are more comfortable with having all the answers.
It’s a tricky balance. There are many areas of care, more as the disease progresses, where we need to make decisions and where the person with the diagnosis is no longer capable. The tightrope walk is to give choice whenever possible and to look for ways to receive care.
An Attitude Adjustment
Felicia knew she needed to escape for a few minutes. The demands of the days had poked and prodded her until she felt ready to scream. As an advocate, she loved her job and the people she served, but some days the challenges overwhelmed. Grabbing a large coffee, she escaped to the small parkette in the back of the building to sit alone for a few minutes. She needed silence and time to breathe.
It wasn’t to be. Sitting on the only bench was Mr. D., husband to one of the residents on her floor. She briefly thought of turning in the other direction, but he’d already seen her so she smiled and sat beside him. Although she didn’t get the silence she craved, Mr. D. had a gift for her she wasn’t expecting. He spoke about his wife, whom he dearly loved, and his career. Felicia drank her coffee and listened. She began to see his losses and was reminded that people like Mr. and Mrs. D. were the reason she loved this demanding job. She returned to her desk renewed.
All the Grandmas
So often in my job, I felt embraced by the love of my residents. I often mentioned all the grandmas looking out for me as I worked. One day as I packed to leave, Clara made her way down the hall to my desk. She had lived with dementia for many years and would be considered “late stage.” I smiled as she neared. “Getting ready to go home?” she asked. Then she frowned and wagged her finger at me. “When you go home, don’t you start working all over again. You put your feet up and rest!” Although her demeanour looked fierce, I saw tender concern underneath. I assured her resting sounded wonderful.
I loved having all my Grandmas look out for me.
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We have to do the same thing with Jeffrey . We need to let him make the word he comes up with in Scrabble rather than the ” big point ” word we come up with . We need to let people make the decisions they can make as long as they are able . I know the example is trivial but the principle is the same .
That’s not trivial at all, Patty. The basic principle is respect, dignity and the humility to believe that everyone has the power to add to your life.