When people who are mentioned in my Acknowledgments read my book Dueling With Dementia: Not The Love Story We Planned, one of the comments I frequently hear is, “I don’t know why I’m on your list of Acknowledgments because I didn’t do anything to help you with your book, but thank you.” Oh, my dear ones, you did more than you can possibly imagine. Your kindnesses throughout the days and years made it possible for me to write my book because you shined light into my darkness, and you kept bringing me the real world that dementia wanted to blot out.
People who are dementia caregivers live in a surreal world. Nothing is as it seems; nothing is as it should be. Up might be down, and right might be left. Alice’s adventures in her Wonderland have nothing on the adventures that we who live with a person who has dementia have. The most bizarre images that Surrealist artists bring to us, like ants crawling out of a hand in Dali’s Un Chien Andalou, make total sense compared to what a person with dementia can come up with because the artist is most likely sane, so his images come from his imagination. A person with dementia comes up with things not derived from imagination but derived from fractured synapses in his brain. We caregivers often gasp in disbelief or stand with our jaws dropping almost to the ground, as our heads spin, trying to make sense out of some behavior that can never make sense. The brain is a wondrous thing when it works well, but it is a terrifying thing when it breaks.
What keeps this terror at bay? What dispels the darkness of dementia caregiving? Kindnesses of all shapes and sizes. Kindness is a light that vanquishes darkness and fear. A word or action that might have been taken for granted or met with a smile and a thank you in the good old days before dementia, now takes on greater meaning in our daily lives. Small kindnesses, like someone letting you go ahead in a grocery line, can make your whole day because sometimes that quick trip to the grocery store is the only break you have from your loved one and his dementia, your only connection with the outside world. Large kindnesses, like still being included in lunches with your work friends even though you no longer work with them, can brighten your life for a week or more. Whatever the kindness, it matters more than you know, and it makes a valuable difference to us caregivers.
So, thank you, dear friends and family, for making this journey not only bearable, but also sometimes surprisingly fun. I couldn’t survive this unexpected (and, if the truth be told, unwanted) adventure of dementia caregiving without you. You are, for me, the many faces of kindness, and I hold each and everyone of you close to my heart. Thank you.