A short and affecting story about family members seeking care for a parent with dementia, one that walks readers candidly into the profound hardships at hand, yet also highlights the silver linings that can be found “along the edges of this dark cloud”…
by: Mike Nolan
Sometimes she remembers. Sometimes she doesn’t. Sometimes she remembers that she doesn’t remember.
We work our way down the hallway of the assisted living facility, my mother’s feet shuffling behind her walker. She stops. “Mike, you are a wonderful son.” She touches my hand and smiles. “And you take such good care of me.”
Mom knows me because I am an embedded memory. What she did the day before yesterday, though, is not embedded, and she can’t recall. It’s one sign of her dementia.
We sit down in the lobby and I remove the bag draped over the walker’s crossbar. While Mom is looking away, I surreptitiously sort through it, getting rid of the detritus: sugar and creamer packets, a half-eaten cookie wrapped in tissue, cutlery from the dining room. Mom would never have collected things when she was herself, but she is a different person now. Or at least, aspects of her personality — her thinking, tracking, concerns — are different.
After my father’s death, my mother lived by herself, isolated in the house they’d shared. My siblings and I would check on her, sometimes staying over: Is she taking her meds? Eating all right? When the doctor told her not to drive anymore, Mom’s isolation became acute. This vibrant individual was distancing herself from friends, not getting out of bed until noon, not changing out of her nightgown, and forgetting to take her meds, although she insisted otherwise.
Dementia takes hold of a person slowly. Eventually, our second-guessing about the signs turned into concerns for Mom’s safety. We worried, then we rushed. We had a family meeting: What’s the best facility for Mom? Can she afford it? Who should have power-of-attorney? Who will coordinate with Mom’s doctor? What do we do with her house?
That was a year ago, when the assisted living facility became Mom’s home. The move was too sudden, and at the same time, we waited too long.
We had Mom over for Thanksgiving, where she held her own, although my wife found a grandchild off in the hallway, quietly crying. “Grandma doesn’t remember me. She doesn’t know who I am.”
For now, my mother can cognitively “fill in” by saying, “Oh, yes, I remember that,” even when I am sure she doesn’t. She can refer to “your wonderful children” when she can’t recall my kids’ names. My mother has always been a lovely, gracious woman, and at ninety-one, her warmth and generous spirit still shine bright. That sweet manner is what gets her through conversations, because she can’t depend on her memory.
I have a daughter who lives back East. She came to visit family last year, especially wanting to see her grandma. “Your grandma won’t remember your visit,” someone told her. That’s true, my mom won’t remember. But my daughter figured out it’s not about creating memories, its about cherishing moments. We’ll all lose our capacity to remember, if we live long enough.
Two weeks ago, the siblings met again and decided to move Mom into a memory care facility. It was clear assisted living couldn’t meet her mounting needs. This will be Mom’s last move. Our anxiety and sadness are just under the surface, and with the coronavirus pandemic, we can’t so much as visit her. Despite the inescapable guilt over not taking Mom home to live with one of us, we know she needs far more care than we could provide. It’s “head versus heart.”
It’s in my mom’s nature to be optimistic — “Pollyanna,” she used to joke. In that spirit, I’ve searched for silver linings along the edges of this dark cloud. I’ve found three.
Even though the siblings have had disagreements over Mom’s care — visceral, emotionally charged disagreements — sorting things out for her has brought us all much closer together, and that’s something my mom would want.
I’ve noticed my mother has a tendency these days to stop what she’s doing and tell some-one how much they mean to her, how much she appreciates them and loves them. I’ve started to do some of that too. It’s powerful.
Finally, our day-to-day lives are crowded with plans and concerns and hopes about the future, but what matters most is what’s happening right now. Focusing on who I’m with at the moment, and making that person the most important thing on my mind, has changed how I interact with people—even though someday I won’t remember our conversation, or even who it is I’m speaking to.
Mike Nolan live in the little town of Port Angeles, on the beautiful Olympic Peninsula, in the far northwest corner of Washington State, and has a web presence at mikenolanstoryteller.com.