The Way it is, Unmasked

Recently, a fellow spouse on the Alzheimer Spouse support forum I frequent (thealzheimerspouse.com) wondered whether her feelings about the decline of her husband, now in AD’s later stages, made her a poor fit for our online fellowship. In spite of the relentless degeneration which has faded his personality to intermittent sparks of his former self, her wish is to cling to the last glimmers for as long as fate allows.

This is in contrast to the frank admission on the part of many spousal caregivers (present company included) that we find the extended nature of the Alzheimer’s journey to be, possibly, its most challenging aspect. And that we might very well (had the choice been offered) have opted for a quick and brutal tragedy over the so-called long goodbye.

Well, my online forum compatriot was quickly reassured by others in the group–there is no “wrong” way to feel when it comes to caregiving for a spouse with Alzheimer’s. It’s a rough process whether it evokes your most nurturing instincts or whether, like me, you have to build some tricky emotional walls in order to keep up the work of caregiving.

Not far from our online discussion on fitting in with the support group is a thread dedicated to “giggles and jokes,” which rises to the surface like a bubble every so often to remind us that even in the face of a disease leaching memory and vitality from our spouses, tragedy can be tinged with comedy.

As for me, I have no doubt I make full use of both classical masks of Greek theater, and usually I am wearing them at the same time. Sometimes the great big grin of Comedy is on top. As when I’m telling Jeff that everything’s “fine,” while juggling a broken water heater and a car that just took a major hit from a falling branch, or–more authentically–when my kids and I are chuckling because their dad has turned into a character from the video game The Sims, and can’t figure out how to step around the dog.

Tragedy, with its upside-down boomerang of a mouth, is just under the smile though, make no mistake. In fact, I’m fairly certain I have an entire Greek Chorus living in my head, and it piped right up the day my online friend expressed her desire to cling to her husband whatever his condition.

“Ahem,” the Chorus chimed, in accusatorial tones. “Are we not a little cold, hiding our true feelings behind a well-buttressed wall of self-preservation?”

“Ahem,” I chimed right back, (in the less dulcet voice my limited singing ability permits.) “What I don’t need are editorial comments on whether I’m the ‘right’ kind of Alzheimer Spouse.”

Because, the thing is, my online forum friend is hardly alone in wondering how her feelings, as a caregiver, stack up to others in the position. We all do it. And we all need to cut ourselves a little slack.

I might just need to get myself some comedy/tragedy earrings to remind myself that–in this gig–feelings across the board are normal and to be expected. And sometimes you need to let them out, in a supportive circle of folks who’ve been there, so you can get back to the job of caregiving.