The Kindness of Strangers

A few months ago we planned to move my parents to a different assisted living facility. I went in to sign the lease and pay first and last months’ rent and a one-time “community fee.” During the lease signing, the administrator said that if something fell through they’d “work with me” on refunds. They wanted people, she said, to come away feeling like they’d been helped, even if they didn’t ultimately end up using the service.

For various reasons, my parents didn’t move. I notified the new place 30 days after lease signing (the day I learned the move wouldn’t happen). They refunded the community fee, and kept the first and last months’ rent.

To be clear, this was entirely legal. The lease specified 30 days’ notice. They were absolutely within their legal rights to keep 2 months’ rent for an apartment that had been kept off the market for 30 days that no one had ever lived in. (They were eventually able to rent it, and we were refunded about 6 days’ worth.)

That I was shocked is down to my own naiveté, and how much I’d needed the compassion the administrator offered me. It’s lonely, caring for someone with dementia. You’re losing them before your eyes. For me…I’m only just beginning to realize how much I’ve relied on my mother when life has been difficult, when I’ve been overwhelmed or frighteneed or blindsided by what life can throw at you sometimes. (One small comfort in all of this is that my mother is starting to come out of her shell and have a social life for the first time in years.)

Dementia care in the US is expensive. Physical issues are often covered at least partially by insurance, but dementia-related cognitive degradation seems to be a massive, unaccounted for hole in the system. This is doubly horrifying when you realize one in three of us will have some form of dementia when we die, and that percentage is going up.

On the one hand, I understand the gap. It’s a strange disease, and it can manifest in so many different ways. My parents have drastically different symptoms, but the bottom line is this: it’s not safe for them to live alone. My father wouldn’t be able to safely use a stove; my mother might, but she’d forget to turn it off. He has a history of falls; they’d both forget to take their medication without reminders.

One thing to understand is that “assisted living” isn’t the same thing as a nursing home. Nursing homes are often covered at least partially by insurance. Assisted living—an unregulated term, I’ve been told—is explicitly not nursing care, and in fact if you need regular skilled nursing you’ve got to handle (and pay for) that separately.

The bottom line? It’s hellishly expensive, and a sign of my parents’ (and my) privilege that they can afford to live in a place that does it well.

The idea that proper dementia care is only provided to those who can afford it is yet another horrific aspect of our health care system. Memory issues are complex and often anxiety-producing. There are few medications that can help, and they don’t help everyone, and they don’t help for long. While there are games and exercises that can help with memory, people like my parents need structure and proactive contact, and people ensuring they don’t injure themselves doing day-to-day tasks.

And there’s no cure, and it gets worse. Always.

I’m eternally grateful to everyone who’s dealt with my parents. So many people—from the receptionist at my dad’s old health club to the ladies running the donut shop around the corner to skilled physical therapists and caregivers—have brought kindness and patience into my parents’ lives when they’ve needed it most. But our abortive attempt to move them made me remember, starkly, that assisted living is a business. Face-to-face sentiment, no matter how sincere, has to be subordinate to the bottom line, or nobody gets help at all.

From my side, it’s pretty easy to be cynical about paying 2 months’ rent for a vacant apartment. I’ll never deal with this particular place again, unless the only alternative is having my parents live in a box. They’ve burned their compassion bridge with me—ironically, I suppose, if that administrator hadn’t told me verbally they were flexible, I wouldn’t be so upset, but I do hate being lied to, especially by someone who knows I’m vulnerable and will say anything to get paid.

But another part of me…kind of gets it. They’re a business because they have to be, because this kind of service, for some unfathomable reason, is considered medically optional while so many less critical services are not. (Way back when, my insurance paid for a full sequence of fertility tests—and we hadn’t even tried to get pregnant yet.) I’m lucky the only way we got ripped off was financially; regulation is state-by-state for these places, and although Massachusetts keeps a close eye, not every state does. I can’t imagine the horror of people who find what they believe to be an attractive, stimulating, and safe place for their loved ones, only to discover they’re being charged for little or no care. Again, we’re privileged here.

Nobody should have to be privileged to get help living with this disease.

What I’ve seen has made me plan, in my head if nowhere else. Papers need to be sorted; anything with a social security number on it, unless it’s essential, should be immediately shredded. All the memorabilia from my childhood and younger days should be likewise sorted, and anything I don’t enjoy looking at today or that The Kid doesn’t care about needs to go. I need to eat properly and get more exercise—neither guarantee you won’t get dementia, but there’s a strong correlation between physical health and future cognitive issues. I need, while I’m young and in my right mind, to make a clear plan for what I’d want if I became cognitively impaired.

But would it be the same? Would what I think I want today comfort me if I became ill? My father is reaching for things he hasn’t been interested in doing for 40 years. Would I find myself longing to go horseback riding again, something I could easily do now but hasn’t interested me for decades? Would I abruptly want to travel, at the very point in my life when travel would be obstructively difficult? Would I become someone I can’t predict today?

I want to know how my parents have changed, how the world looks to them now. I want to crawl into their brains and compare their reality with my own. I want to understand their perspective, figure out how to communicate with them the way I used to.

I can’t. They have no way out, and I have no way in. My mother understands she’s not remembering things, and that helps; but she can’t tell me what it’s like to have a rich, full conversation swept from her mind like fog in a breeze. And my father doesn’t believe there’s anything wrong with him at all; I can’t phrase the question in a way he understands. The concept doesn’t make sense to him.

Despite being an unapologetic cynic, I’ve always been a bit vulnerable to kindness. I’ve always been inclined to trust people who give the appearance of being helpful. You’d think after all the times I’d been burned I’d have learned, but I haven’t. I signed that lease sincerely believing my parents would move; when I had to break it, I sincerely believed the “we’ll work with you” meant they’d do more than adhere to the letter of the lease. I was stupid, and it was expensive, and I can’t go back, but I can tell other people they can’t let their need for compassion get in the way of their business sense.

Never believe a word anyone says until they put it in writing.

Recognize, when you’re stressed and needing help, your judgement is not going to be the best.

And for the love of all of us, vote for people who’ll push for a better health system, because the cost of basic safety for people with dementia is too bloody high.

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