Our two youngest kids, Tam and Zoe, graduated from college almost a year ago. Tam moved to Kingston with a couple of friends, and Zoe moved in with us and got a job, bought a car and contemplated her future.
She hangs out in the kitchen with us and shares stories of her day, and as we grapple with Alzheimer’s disease, she shares in that, too.
We didn’t tell the girls right away when Bella was diagnosed 26 months ago. It came up a few weeks after the diagnosis, when Bella was arguing with both of them over something she had done and then, when I walked in the room, she suggested I tell them as a way of explaining her behavior.
“Your mom has been diagnosed with mild cognitive impairment, the early stage of younger-onset Alzheimer’s disease,” I said.
It seemed an abrupt way to break the news, but I can’t think of a way that would be welcome. Since then, Bella has used her diagnosis to defend herself plenty of times.
She’ll let out a stagey moan when one of us complains about something being moved and misplaced, or a password being reset to something unknown or a receipt for a mysterious online order popping up in our email.
“You ordered two of them!” I’ll expostulate.
“I have Alzheimer’s disease,” she’ll wail. “Don’t be mean to me.”
Alzheimer’s has not stolen her sense of humor. It has made her less prickly and more spontaneous. It has taken away veils she used in the past to cover her vulnerabilities.
Our dog, Pepper, and our bunny, Beans, are her security blankets now, she says, and Zoe and I, the other creatures in the house, are too. The atmosphere when we’re not around can be unsettling, like she’s in a silent movie, she says.
Zoe’s presence is a comfort to me, too. She is bearing witness as I am, and she supports me, mostly by being there.
Her mom’s energy and ambition have been an inspiration and annoyance for Zoe always, but now, sooner than expected, she’s watching her mom move into another stage of life.
She sees, as I do, that although Bella can still be resourceful and surprise us with the answer to a crossword clue, Alzheimer’s never stops advancing.
This experience tests our resilience, although the test is not as hard as the one Bella is undergoing.
“I am losing my mind,” she’ll say sometimes, when she asks for help texting a relative, for example, and then is shown that she just did text them.
She laments what is happening to her and what the disease is putting the rest of her family through, although we don’t have to consider death in the firsthand way she does. But we are being changed, as we adjust our expectations and make our accommodations. Little by little, this experience that we do not want but cannot stop is transforming who we are, too.