I wrote the following caregiver narrative after being invited to share my story during the Reason To Hope breakfast hosted by my local chapter of the Alzheimer’s Association on March 28, 2019.
Good morning. It means a lot to me to have been asked to speak with you today. Thank you for being here with us. My name is Elizabeth Wolf. My mother and my father were both diagnosed with Alzheimer’s disease within four months of each other in 2010. I have been turning the word “diagnosed” over and over in my mind a lot recently. Is this what we call it when a doctor hands you two words that leave your life in ruins? Alzheimer’s disease is a death sentence. There is no cure. There are no treatments. There has never been a survivor. At the time my parents were diagnosed, we weren’t even offered support except for advice to work on crossword puzzles.
I was only in my twenties when this happened. I was still my parents’ child. I did not know that within two years I would be changing my mother’s diapers and chasing her around the house. I would liken her to a toddler in an attempt to relate to all my friends who were busy having babies. Dad would get up in the morning and ask me if it was time to get dressed for school. My parents became like my children. I was their full-time caregiver. Night after night I would soothe Momma to sleep after I’d carried her – my 160-pound mother – after I’d literally carried her to bed. In the days when she could still walk, sometimes I spent the entire night carrying her back to bed. She wouldn’t go on her own. It was as if she forgot how to sleep. I would lay her down beside my father who was angry and agitated and shouting at us both. None of us could rest. Eventually, she would doze, and by morning Dad had forgotten his anger. By the time day broke, he would be serenading her: “Good morning Mommy. Good morning my love!”
I often say that Alzheimer’s Disease bestowed a terrible grace upon my family. My parents’ love was so deep. This disease ravaged my mother – body, mind, and soul. Some days it would take 3 of us to bathe her because she fought so hard against our care. Yet through it all, my father maintained a kind of oblivion. He rarely saw the struggle. Just saw his love. It reminds me of this quote from the Little Prince: “It is only with the heart that one can see rightly, what is essential is invisible to the eye.” This was the grace of their shared diagnosis. All that was essential was their love. He could scarcely see the hardship. On no day in particular in the middle of the winter before we lost her, I was sitting with my parents as I often did – cozy and cuddled up on the couch. Momma hadn’t eaten in days, hadn’t walked in months, hadn’t recognized me in years… Dad must have been daydreaming of the beach because out of nowhere, he asked if I would mind taking them on a ride down the shore. On this gray and frigid day, he looked excitedly toward his wife and asked, “Wouldn’t you like to go Mom? Down the shore to walk the boards?” My crumpled up mother who would never be able to answer let alone be able to walk… The grace of that moment broke me. There was so much hope in his question. No matter how much this disease stole from her, it stole his capacity to comprehend the devastation.
But we – you and I – must comprehend the devastation. The Facts & Figures about Alzheimer’s disease are staggering, but our hope must be even greater. The work we do at the Alzheimer’s Association is the hope. My grandma-in-law often says, “Hope is not a method.” The work we do is the hope AND the method. Our programs, our advocacy, our outreach, our helpline – the things we do day in and day out are the hope for countless families. We walk beside them through the devastation as we walk together toward an end to it. Walk with us. Let us be your reason to hope.
Thank you for listening.