If you ever need to feel the full weight of public opinion, consider putting your parent in “a facility.” Distant friends and family are suddenly in your grill, liberal with judgment or comments or silent vibes that show they disapprove. It hurts even more when you agree with them.
I never imagined we would have to move mom from her home, and then leave her in a strange place with people she didn’t know. It was an agonizing choice, further complicated because the decision relied on four siblings, none of whom (as noted frequently in these posts) had ever discussed the concept with each other or either parent.
THE CHARADE
Nina had expressed just one wish directly to my sister and me, and it came while sitting at the edge of her bed on her first morning as a widow.
“I want to die. I used to be afraid of dying but I’m not anymore. I really want to die.”
This was a rare, candid moment— Nina saying what she really wanted, unfiltered by what anyone else thought or expected or wanted. Then, in the way that had characterized her impeccable use of vocabulary, pre-Alzheimer's, she added, “I don’t want to go on living this charade.”
For a wild moment my sister and I locked eyes, silently racing in our own minds through possible solutions: Could we really do something? Could we get a pill or pills? Make it look like she had taken them herself? Did we have anything in the house? Could we get something? Would anyone help? Wasn’t there a place in Switzerland?
We never even got to the biggest question: “could we live with ourselves?” because it wasn’t our choice to make. Legally, it wasn’t even Nina’s choice to make, for reasons we’ll discuss in another post.
She restated it once, to all four of us, then never asked about it—or asked for anything—again. Rather than fulfill her one request, all we could do was be complicit in the “charade,” a word she would lose her ability to find, for the request she’d lose her boldness to make. The topic faded away, like every sense of agency in the face of this disease.
Later, we learned the three things she had confided to a friend in the days that immediately followed.
“I know I can’t live alone."
“I don’t want to be a burden.”
“I would prefer to stay here at home.”
When it came to mom being at home vs in a home, I was determined to go down swinging.
THE SHORT TERM FIX
In what would become the standard, Beatie was the first to propose a solution: “She can live with us while we figure out what to do.” Sometime in the tornado of events since Buck’s heart attack, she had consulted with her husband John, who said unhesitatingly, “I’d be honored to have Nina live with us.” For that reaction alone John is my hero, though his patience, humor and consistent calm through the next few years would deepen my admiration.
Nina’s two wishes—wanting to live at home, and not wanting to be a burden— are commonly expressed and also mightily hard to reconcile. People at any stage of dementia have many needs that only increase with time. Social contact is more important than ever, so it’s key to live close to friends and family who will visit.
None of us had the ability to move in with her, or for various reasons, for her and the caregivers she would need to live with us full-time. Even if you can find and afford full-time, in-home care, it needs to be managed by family and include frequent visitation. Now, when I see people planning for and finding spaces in or near their homes for aging parents, I see it as pure love. We had all the love part, but none of the planning.
FANTASY VS REALITY
As a nurse, Beatie was the only one of us with a realistic view of what my mom’s needs would be from here. As a planner, she had already looked ahead to what it would require for Nina to stay at home, four hours away from both sisters and in the mountains where deep snow and ice are daily hazards all winter.
In my parallel, fantasy universe, their home would remain the lively place it had been during my visits. During the day, Nina would sit contentedly in the living room or kitchen, enjoying the sunlight and the familiar view. Friends would flow through the house as they always had, their happy hour visits turning into regular check-ins on Nina until we could find a permanent arrangement.
At the same time, I was also getting reality checks from close friends who had been through this particular rodeo.“They won’t come by,” my friend Jean assured me of these people who all had busy lives of their own. Jean had adopted my parents after I moved away, often shoveling their front porch on her way to work at the mountain, and showing up on her way back home in the evening to fill them in on the local gossip over a glass of wine. She knew their day-to-day was not one big après ski party. She, too, had since moved away. As much as I willed it, home would never be the place we had known, and the cold, harsh weather we’d thrived on as skiers was just plain cold and harsh to a housebound senior.
THE RACE TO FIND CARE
Despite the counsel, from my place on the other side of the country, I kept my foot on the gas searching for in-home care. A friend whose mother had suffered from Alzheimer’s connected me to a kind caregiver who advocated for in-home care and set about finding a suitable caregiver through her network.
In-home care and a care facility were roughly the same cost. When my sister Anne hastily took over the reins of Buck’s finances we learned that though Buck had not chatted about mortality while he was alive, he had ensured Nina’s financial security after his death. He had given us a runway with options, an extraordinary gift.
While I was barreling down the road to find a full-time caregiver, my sister was going full speed down another path, looking at facilities in the Bay Area, where both sisters would be able to visit Nina regularly and manage her care. To me, now militantly convinced that in-home care was the best answer, it felt like a race.
Once Mom had moved in with Beatie and John, they started touring the facilities that Nina called, “places where they salt the old people away.” And yet, she never said “No” or “this is not what I want,” or “this is what I DO want,” or “Damn you Scooby Doo kids always meddling!” Perhaps, if she had stuck up for herself even a tiny bit, we might have united our efforts to keep her at home. Instead she seemed genuinely indifferent.
In Japanese “meiwaku” is the term used for “being a nuisance,” and elderly people there try to avoid it at all costs. Their society is hard-wired to strive for a no-meiwaku existence where they remain physically, socially, mentally and financially independent into old age. It had always pained Nina to impose on anyone for anything, and her complete dependence—especially in this stressful time of limbo—must have been excruciating. She likely knew that being in a facility would minimize conflict between us kids, and in doing so make life better for everyone, except herself.
Besides, she’d already told us what she wanted that morning after Dad died, and she’d meant it. Now, she was resigned to living out a life beyond her control and desires. Being Nina, she went along with everything, without complaint.
After a month of calling and emailing, I’d found a person who seemed like a perfect fit to live with Mom. She had even lived in the area before, and understood winter in the mountains. It felt like I’d won the race to keep Nina at home. When I jubilantly reported my discovery I got no applause. Not even a slow clap.
Instead, I came up against the same thing I now see in so many families facing this scenario. (Yep, we’re going right there in an upcoming post). I did not see the full scope of Mom’s needs, and the daily heartbreak of trying to meet them—the reality Beatie was now living. Finding one person, one piece of a constantly shifting puzzle, wasn’t enough. As the absentee sibling I would be furthest from the daily care and frequent crises. Unless I was ready to take full control of mom’s care, and find a way to be present for her, my fantasy world would remain just that. And so, we looked for a “home.”
I knew my sisters had a more realistic view of what was sensible and doable and best for our family situation and for Nina. I understood the rationale and the practicalities, and also that it was safer for mom. But that doesn’t mean I came to terms with it.
Up Next:
Time to party! This one was tough, so next week we’re going to a happier time, when the community came together to celebrate Nina.
Long ago now, we made a snap decision to bring my mom to our home when the doctor releasing her said she could not go home by herself--either a nursing home or one of her daughter's. This was not Alzheimer's, but she was not expected to live more than a month or two, so we thought we would avoid her dying alone somewhere. We could do this hard thing for a short time. It was a difficult TWO YEARS. Yes, she sort of surprised all the doctors and lived with us for two years, getting better along the way to the point where she was able to move out into her own apartment. That little segment is the happy ending part, but the two years was so taxing on everyone. It was definitely worth it in our case, but caring for a sick parent is not for the faint of heart.
Such a hard decision! My brother and I struggle a lot with it and always wonder if we made the right choice to move our mother to an assisted living home… thanks for sharing this!