Alzheimer's Book Club: True Biz

I could feel the relief in my shoulders melting down my back as I listened to the description of February's video call with her mother, a deaf woman living with dementia, depicted in True Biz: A Novel, by Sava Nović.

The video call facilitated the conversation between the 2 women, who were communicating through sign language. February's mother was relating all of the fun times her and her childhood friend, Lu, also deaf, were having together at their shared long-term care facility.

The two chatted away as though dementia wasn't a thing that plagued them and as though February didn't regularly regret placing her mom into long-term care. This fictional character and I experienced relief at this brief normalcy together; I would argue that we were near joy.

And then, as Mom was ready to sign off to go about her day with her bestie, she concluded this normal conversation with her daughter how, I imagine, she had for a great number of years: "Now will you go get your father for me?"

Dementia-related synopsis

True Biz follows the story of 3 members of the deaf community, including February, the headmaster at a school for deaf children who also is a caregiver for her mother living with dementia. As the course of the story unfolds, the school, River Valley School for the Deaf, is being closed for budget considerations, leaving February concerned for the kids as well as for herself. She will be left without a job or a home, as February lives on campus with her wife, Mel, and her mom.

Though February can't bring herself to discuss these items with her wife, she is pushed to do something she had really only considered previously, placing her mom into long-term care. (This is only a small part of a really great larger story, but it's the part that relates to our shared experience, and thus the part I'm highlighting here.)

Depicting cognitive decline

"She couldn't tell her, not again. She'd broken the news dozens of times, and each time her mother was stunned and wounded, just as she had been the night he died. What a cruel disease, she thought, to steal from a person all their best moments, and make them relive the worst ones nightly. To force their loved ones to deliver these blows of memory until they, too, were subsumed by the echoing grief."

Ultimately, February answered her mom's query with a brief, "he's resting," making a choice I imagine we all have made at some point in walking this path with dementia.

Ms. Nović and her carefully crafted sentences brought me right back to a sleepless night at my grandfather's one bedroom apartment as he was told that he should prepare himself for the worst in visiting his wife in the hospital as a health scare unfolded.

The memory is indelible as I watched this titan in my life fall to pieces, head bowed, shoulders shuddering just visible against the briefest of light coming from above the stove. It cuts so deeply, but pales in comparison to the memory from a few years down the line, after Alzheimer's had stolen many of his happy memories and snatched from him much of his ability to communicate, Pop's seemingly passive expression as he patted the hand of his departed wife of more than 50 years.

Do the best you can

How do you tell someone the most heartbreaking news of their life once, let alone repeatedly? With the same agonizing grief that you do in deciding that your care isn’t the best thing for them: by making the next right decision.

Walking this path, we learn to accept that there are some cruelties that are too much to bear, and so we do the best we can. I don't know that there is a correct or ethical answer as to whether to repeatedly tell someone their partner has passed. But I do know this: I'd gladly weather this emotional storm to grant him even a few more moments of living in a world with her.