The eleventh chapter of Surfing the Waves of Alzheimer’s carries the title “Enter Their World.” In it, I detail Harvey’s experiences with respite care and two in-home paid caregivers. I witnessed first hand how seamlessly they embodied the ability to enter into Harvey’s world of the moment. I’ve come to conclude that this principle is the foundational caregiving principle upon which all caregiving is built. Until you can put yourself into the mindset of a person living with dementia, you will always be an outsider, trying to bring your loved one back into your world. You will fail, and become frustrated. As will they.
Thirty years ago, the prevailing approach to dementia caregiving was to reorient the patient to reality. This only led to confusion and anger. A person living with dementia cannot understand reality, and it does no good to correct them. You must enter their world and try to see reality from their point of view. Easier said than done, I know.
When Harvey’s neurologist remarked in his notes that Harvey’s demeanor was “childlike,” I knew what he meant, and I began to see him more clearly through that lens. Without belittling him or treating him like a child, I did begin to intact with him more productively when I remembered that he had the mind of a child. I also began to play with him as I would with a young boy.
The idea of playing with Harvey in his world solidified during the holiday visit with our out of town friends that I wrote about last month. One night, we decided to visit our zoo for Zoolight Safari and enjoy the myriad decorative lights and to ride the train. It was very cold that night, and the line for the train was long and moving slowly. We ducked into a gift shop and bought hot cocoa to steel ourselves for the frigid wait. In the shop, our friend Kate spied hats made to look like animals. She put a warm giraffe hat on Harvey, and a bear hat on herself. He loved it so much that I bought it for him. I can’t express how completely out of character it was for my previously stolid husband to galavant around the zoo at night with a giraffe on his head. I had to let go of the image of who Harvey was in the past, replace it with who Harvey was at the moment, and relax into playing with him. We were four kids just having fun at the zoo. We had all entered Harvey’s world.
After that visit, I began to play with Harvey more often. We played simple card games, danced and sang to his favorite Bruce Springsteen songs, and played catch.
When our daughters were young, Harvey had two phrases that he routinely used when playing catch with them. If one of them didn’t catch the ball, he would say, “Oh, bad pitch,” and conversely, if she threw wildly, Harvey, scrambling to retrieve the ball, would yell, “Bad catch.” They had no idea that he was protecting their developing egos. As they grew, of course they began to understand the kindness their father was showing, and it became an inside family catch-phrase we employed to encourage each other. When I started playing catch with Harvey while he was in the middle stage of Alzheimer’s disease, I found myself saying the same words.
Although I made lots of “bad pitches” and “bad catches” in my caregiving, this way of entering his world made our relationship easier and lighter.
2 Responses
This is a beautiful post, Renee. Your love for Harvey shines throughout the writing. I think that the idea of entering the world of a person with Alzheimer’s is key, so much so that my children’s book, A DOLL FOR GRANDMA, is about exactly that! The little girl in my story steps into the changed inner world of her grandmother to figure out new ways to sustain their close, loving relationship. I hope the book can show children (and maybe even adults) how best to love people with Alzheimer’s: Just as they are.
Thank you, Paulette. I’ve seen your book on AlzAuthors. So glad your approach was having the granddaughter enter into her grandmother’s world. Children can teach us so much.