March More Voices: Dementia

Dear readers,

Our first inkling of trouble came when Maman, my Belgian mother, got lost en route to our house. After my father died, Maman had been living alone in a New Jersey apartment, and she would periodically drive across the George Washington Bridge to come visit us.

One day she didn’t arrive on schedule. After an hour had passed and we were growing frantic, the phone rang.

“I’m at a restaurant,” Maman said.

“Which one?”

“The one we always go to,” she said.

She didn’t know how to get to our house from there–she had no cell phone or GPS–so we went to fetch her.

When we got to our usual diner, Maman wasn’t there. We finally tracked her down at an unfamiliar eatery some distance away.

When we asked how she’d landed there, she became irritated.

“There was construction. They wouldn’t let me go where I wanted to.”

So it began, a decline that felt like bumping down a flight of stairs.

One day she took a bus somewhere and returned home without her wallet. She couldn’t remember which bus she’d taken or where she’d gone.

Her refrigerator grew shockingly bare.

When my brother and I expressed concern, she’d say, “I’m fine.”

When we mentioned the possibility of assisted living, she became furious. “If you try to put me somewhere, I’ll throw myself off the balcony!” (She lived on the eleventh floor, so we took this threat from our impulsive mother seriously.)

Eventually, my brother and I brought her to live with us, shuttling her between our two homes on a monthly basis. At one point, while staying at my house, she fell down the basement stairs, landing on concrete. Amazingly, no bones were broken.

Finally, the strain of wrangling a demented individual who insists that she’s perfectly okay became too much. By that point, she was foggy enough that we could transport her, without notice, to an assisted-living home, where she asked, “Is this where you live now?”

She eventually needed round-the-clock care from two loving aides. Then, as money started running out, we transferred her to a less costly option–the memory unit. After that, when her money was completely gone, she qualified for Medicaid and moved next door to the nursing home.

Maman was fiercely independent and had a temper, and I’d always worried that she’d become bitter and angry with age. Instead, her dementia softened her–and left her with her two most endearing qualities: affection for others, and a sense of humor.

“I love you,” she’d tell the aides who dressed and bathed her.

“I love you, too, Titi,” they’d respond.

One day, while we were having lunch together, a piece of cucumber fell from her fork onto her chest. She looked down at this round green slice, then up at me and laughed. “It’s quite a medal!” she said.

Toward the end, Maman couldn’t remember much of anything. She couldn’t remember what she’d said two minutes ago. Couldn’t remember our weekly visits. But she did recognize me, even if she wasn’t always clear on what our connection was.

Maman passed away quietly on the night before Thanksgiving.

While it had been painful to see her memory slip away and to lose our ability to have real conversations, her decline wasn’t all bad. She wasn’t in pain. Her denial kept her suffering at bay. And her capacity for affection and laughter stayed with her until the end.

It could have been so much worse.

This month’s More Voices theme is Dementia. What’s been your experience of dementia–as a family member or caregiver, health professional, or perhaps someone like me, who is finding it harder to locate names in my mental filing cabinet? (Is that dementia, or just my brain’s file clerk losing his dexterity?)

Share your story using the More Voices Submission Form. For more details, visit More Voices FAQs. And have a look at last month’s theme: Bravery.

Remember, your story should be 40-400 words. And no poetry, please.

We look forward to hearing from you. And thank you for being a part of this caring community.

With warm regards,

Paul Gross
Editor

PS For those who are feeling a need to express support for Ukraine today, here’s a link to the official fundraising site for the government of Ukraine. I gave a contribution this morning.