“Is that my daughter?” Mom’s greeting felt bittersweet. Mom, who is 93 and lives in an assisted living facility in Los Angeles, had been asleep in the lunch room. She’d nodded off over a bowl of soup.
I’d flown in from Florida to spend a day with Mom, though a day hardly seems adequate to spend with someone you have spent a lifetime with. I sat beside her wheelchair and squeezed her brown-spotted hand. She opened her blue eyes on me. Her instant recognition — “Is that my daughter?” — made my heart open like an old rose.
I hadn’t seen Mom since February. I’d worried that the day may have come when Mom, who has dementia, wouldn’t know me. Ironically, the fact that she did also saddened me. She was the first to express why: “Seeing you makes me realize how much I miss you,” she said.
“Me, too,” I said.
Three years ago, my brother and I, at our father’s request, moved our parents from their home of nearly 50 years into assisted living. Mom’s memory was going and she kept falling. Dad was struggling with heart and lung disease, knew his days were numbered, and wanted to be sure Mom was taken care of. So here we were.
The weather outside was Southern California perfect, so I wheeled Mom out the memory care center’s locked gates to see the rose flower garden. The high security seemed unnecessary since Mom is hardly a flight risk. She can’t stand on her own, let alone walk out. We find some shade and hold hands. A pair of butterflies flit by.
Her conversation blended the delusional — her parents were still alive, and my Dad, who died two years ago, was out running errands — with the lucid: How was Florida and the new man in my life? And there was also the heartbreaking truth: “I wish I were at home, and you were coming in the front door calling out, ‘Hi Mom, I’m home!’ “
Home.
Even after three years, this center is not home for her.
I’m reading “Being Mortal,” by Atul Gawande, a surgeon and Harvard professor. Gawande examines questions like: What makes life worth living when we are old, frail and can no longer care for ourselves? And why, try as they might, do nursing homes and assisted-living centers fall short?
The answer he most often hears: It just isn’t home. “Having a place that genuinely feels like your home can seem as essential to a person as water to a fish,” he writes.
That’s Mom’s chief complaint. Though, her care is good, the staff kind, the rooms clean, the meals decent, and the grounds well kept, it just isn’t home. And home is where she wants to be.
When an aide comes to take Mom for her weekly hair appointment, which she needs, I give Mom a kiss and promise to be back as soon as I can, though I honestly don’t know when I can next make the 3,000-mile trip.
You can’t care about home and your parents as much as I do, and not come away from a visit like this without racking your brain for a better alternative. I find this clue in Gawande’s book: What those nearing the end of their lives want most are companionship and comfort.
I think about how I can give Mom more of both. I cannot care for Mom in my home. She’s on oxygen, incontinent, can’t eat solid foods, and needs help bathing, dressing, moving and eating.
But … if she were closer to me! I could visit her a few times a week. We could have coffee. I could check on her care, see that her hair was done and her clothes clean. My daughters — her only grandchildren — could see her when they came on college breaks.
Sure, staying put has its advantages. She’s nearer my brother, who is still an hour away, and between his work and L.A. traffic only gets out to see Mom about once a month. And she’s settled and stable. Moving her would disrupt her patterns and routines, important touchstones for those with dementia. But what if a move could benefit her — and me?
So this past week, I read up and asked some dementia experts about the pros and cons of such a move, and how to lessen transfer trauma. Here’s what to consider:
Get them involved. The more your loved one participates in the transfer decision and process, the less they will suffer from setbacks, which are directly related to how much control they feel they have, said Kim Warchol, founder of Dementia Care Specialists, a Milwaukee group that helps families navigate care choices.
Ask about the new center’s transition team. How your loved one gets welcomed into the new community plays a huge role in how well he or she adjusts. The care team should learn the new resident’s life story and work that story into conversations during daily routines, meals and activities, said Warchol. The transition team should also connect newcomers with others in the community, and find ways to help them find a sense of purpose, even if that means folding towels.
Get an outside opinion. Sadly, economics play a role and can color advice. Her current care team has nothing to gain by supporting Mom’s transfer, and the Florida home where she might go also wants the revenue of a cash-paying resident. So I am looking to hire an independent geriatrician to assess Mom and advise me on whether she can, or should, weather the change.
Understand that adjustment takes time. Getting used to a new home can take a month or more, said Warchol. That may be worth the disruption, if, in the long run, comfort, companionship and quality of life improve.
I want what’s best for Mom, who can’t go home. Really, almost none of us can. But she can be closer to my home. And that might be the next best thing.
Syndicated columnist Marni Jameson is the author of two home and lifestyle books, and the forthcoming “Downsizing the Family Home: What to Keep, What to Let Go” (Sterling Press). Contact her through .
