Our loved ones have delusions, but caregivers have some too. It’s possible that we need them to keep ourselves afloat.
When I began to take care of my mom, I started a careful record of her symptoms and recorded changes in her cognitive skills. Reading over my notes from a few years back, I see now how determined I was to focus on what she could still manage while minimizing what she lost. Part of me was unwilling to believe that the disease would progress. Another part was determined to use every avenue of health maintenance to keep her symptoms at bay. We tried chelations, nutritional supplements, exercise, love…. The illusion that I could keep her stable was like some daily vitamin I took to fuel my caregiver routine.
Now I feel a strange nostalgia reading over my old notes. They describe days when Mom could still make her breakfast or put on shoes. It seems like forever since she could cut her own food, but the pages remind me that there was a time when handling a knife was still within her repertoire. I desperately wanted to help her hold onto those skills. The crazy notion that I could do it kept me going.
My responsibilities have changed since then. Now my sister is doing more direct care for mom. This shift has given me a chance to reflect on the ways that caregiving has changed my life. As I observe my sister, I see that she’s doing exactly what I did: digging her feet into the sand, determined to keep the tide from sweeping good moments away. I don’t think this kind of perseverance is just some family trait. I believe it’s a quality caregivers need in order to survive. The caregiver job description might read something like: Must be diligent, a bit delusional, and able to stand upright as the hurricane blows around you.