The author dances with her father, Wesley W. Ferris, at her parents' 40th wedding anniversary party in 1988.
I believe the majority of people who decide to be a caregiver of a loved one with dementia would not do so if they truly knew what was involved.
There will be long, thankless hours. There will be embarrassing showers to give, bodily fluids to clean up. You may feel abandoned by family and friends. They don’t call or visit because you’re no longer the fun one, the available one or the energetic one.
Webster’s needs to come up with a new word for the type of tired that goes along with caregiving. During the time I took care of my dad, I grabbed impromptu naps, mostly by accident, while waiting at the drive-through, standing in line at the grocery store, and in a public bathroom stall. I wouldn’t even remember closing my eyes before someone would rouse me, a mere 10 winks into my 40.
There were months on end of going only from work to home to the pharmacy to home to the grocery store to home; of perfecting the five-minute shower; of spending more time in doctor’s waiting rooms than in my bedroom.
But, I wouldn’t give it up for a second.
A brief tutorial about my dad: He was the best. He taught me at age 10 how to change the oil in a car. He said it would be nice to have a guy take care of his youngest daughter, but he wanted to make sure she knew how to take care of herself first. He took me to my first day of kindergarten, my first day of Girl Scouts, and my first (and only) day of ballet class. He took me shopping for every fancy dress I ever wore. He was my champion, my backbone, my conscience. The least I could do was make sure he kept his dignity and sense of humor until the end.
Speaking of, there’s a level of humor that comes only when humor is all you have left. In my family, there was no crisis so great you couldn’t find a joke hiding in it somewhere. The only exception to that was when my mother died. In my dad’s eyes and those of her children, that was the day the cardinals stopped singing and the hummingbirds’ wings stilled. Other than that, there was nothing that wasn’t fair game. This was my father’s doing.
My dad spent the last six weeks of his life in hospice, to keep him safe as he traversed the descending physical and mental rollercoaster of Alzheimer’s. One day I received a call from the hospice administrator. My heart stopped. There was no good outcome that came to mind as her name flashed across my cell phone screen.
She said, “Ms. Ferris, I wanted to let you know I heard something today that is unusual for us here at hospice. When the noise grew louder, I stepped into the hall to see where it was coming from. I realized it was in your dad’s room.”
Not good, I thought, wondering whether my dad was dead or evicted.
“I walked into his room,” she continued, “and saw every staff member standing around his bed as he entertained them with his humorous stories. Some were crying...crying from laughter. This is very unusual for us. I just wanted you to know.”
I was so proud of my dad at that moment. He was still who he had always been, and he was going to leave this world with a guffaw and not a sigh. My dad’s unstated life goal was to show people through humor what was important and what was not. Mission accomplished.
As I fretted my way through life, my dad would often say to me, “It’s all small potatoes, kid.” This lesson was never brought home more clearly than when I was given the honor of being his caretaker.
Dishes in the sink and an overgrown lawn were not worth my attention. What was important was the feel of my dad’s hand in mine; listening to the sound of his laughter as I told him the same story for the 30th time; knowing the care he selflessly gave to me as a child was, I hoped, being repaid to him now.
I still believe the majority of people who decide to be a dementia caregiver would not do so if they knew in advance what was involved. And I’m so glad they don’t. There’s something we learn about ourselves as we wade through the quicksand, something significant. My journey would not be complete if I hadn’t discovered how much or how selflessly I could love someone else. And for that reason, I say, my dad never stopped raising me, until the day he died.
Yvette Ferris is currently writing a book on her experiences being a caregiver for her dad. She lives in Madison, Wis.
