In January of 2020, my 84-year-old father was taking public transportation to volunteer at the science museum, where he gave a presentation to little kids called “Hearing Light, Seeing Sound.” By June, he couldn’t walk.
Somehow his Parkinson’s — which was well-managed for years — had gotten very bad, very fast. His dramatic decline was, in part, a result of no longer being able to volunteer: he was depressed and bored, sad and quiet. When I brought my parents groceries so they didn’t have to go to the store, he would always say something like “you’re young, let us go to the store and get COVID.” I’d remind him that COVID is a pretty unpleasant way to go, but he remained unconvinced: “Nothing is pleasant,” he mumbled.
Then in late June he fell in the shower and couldn’t get up. When the EMTs arrived they gently lifted him up and brought him to the hospital, never asking whether he wanted to go. And this was a good thing: I’ve learned over the last month that the heroes among us are those who make executive decisions without input, and take the burden of choice out of our hands.
The rest of the last month is a blur. There was the ER doctor who told me as nicely as she could that something was wrong with my family because my father obviously wasn’t safe at home and we hadn’t done anything about it. (She was right, we were jerks). There was a desperate hour trying to get my mother to pick up her cell phone — turns out she doesn’t know how to use it after all — but she had taken herself out to breakfast while my dad languished in the ER, staking her claim as someone who was not going to be participating in whatever happened next.
There were emergency arrangements with a home health care aide, who didn’t want to be paid above-board, no matter how many times I explained that we wanted to issue him a W-2 or even a 1099. There was begging the health insurance company to pay for a wheelchair.
Then there was the week when I started to enroll Dad in at-home hospice care because he said matter-of-factly, “this disease has beaten me, and I don’t want to fight anymore.”
But one day I asked Dad if anyone had brought him a beer. “I’m allowed to have beer?” he asked with a combination of sadness and hope that I’m never going to forget. “Of course,” I said, “why not?” Soon I had a delivery of his favorite things at the door: Sierra Nevada IPA, root beer, double vanilla ice cream, and brown butter cookies.
And unsurprisingly, he rallied. Apparently, there is restorative power in drinking a six-pack of your favorite beer, and chasing it with a tub of vanilla ice cream. So no hospice for Dad.
But now what? In two days he enters an assisted living facility. The decision is a result of a hodge-podge of research, crying, asking him the same questions over and over again, and gut instinct. What I learned over the last month is below.
Beware of Caring.Com and Similar Websites
If you’ve ever searched for a new car online and plugged your email or phone number into a website so someone from a dealership can get back to you, you’ll understand the experience of using one of these referral sites.
In a now-regrettable move, I went to Caring.Com and entered my information. Mistake. For the next month, I was inundated with phone calls from assisted living facilities from all over Southern California.
It was relentless. When I asked the caller to simply email me — as I had provided that information too — they wouldn’t, for reasons that are still unclear to me. Instead, they just tried to keep me on the phone with a lot of “we’re here for you” platitudes.
I came to understand that assisted-living and board-and-care facilities are a huge industry, and their representatives are ultimately trying to make sales. While aggressive salesmanship is annoying when buying a car, it’s downright spine-curling when it relates to your elderly parent.
Initially, I tried to be nice and polite to each caller, mindful that all Instagram influencers are certain that the energy I put out in the world boomerangs back onto me. But eventually, it became clear that being nice doesn’t work when someone is intent on making a sale, and these salespeople will continue to call you, over and over, until you get scary-angry.
If you don’t want to waste energy getting scary-angry at each caller, the better move in this situation is to do it the old fashioned way: talk to friends and family, and find out the good places near you with which people have real-life experience.
Get Your Parent into Assisted Living Earlier Rather Than Later
The good assisted living facilities focus on creating a community and ensuring that its residents socialize and stay active. There’s a lot to enjoy at these places before a dramatic physical or mental decline. The place where my dad is going has movie nights, field trips to museums, guest speakers. Each resident has their own kitchenette and is free to come and go as they please. They can bring their pets. There is a chef who makes slow-roasted baby back ribs and sweet potato fries. There are yoga classes.
In other words, this place seems like a blast, and I am kicking myself that we didn’t get Dad in there sooner, so he could have enjoyed all these perks, made it his home. Then, after feeling at home for a few months or even a few years, if he had a dramatic physical decline it would be less terrifying. But as it stands now, he’s not going to have as much fun as he could have.
I’ve talked to folks at his new place, and joked that I would be moving in soon myself — who can resist baby back ribs? — and they confirmed that there are people who move in while they are fully independent and then age in place. This seems like the most thoughtful and elegant way to do it, and I wish someone had explained this to me. I would much rather have not made this decision because of an emergency room visit.
Think about long-term care insurance — now.
My father has long-term care insurance. After it pays out, we will still be approximately $5,500 out of pocket each month. Enough said.
Tell people you are allergic to panic.
When I thought my Dad was going into hospice, I told all our friends and family, and the world immediately divided into two types of people: the ones that wanted to offer concrete help, and the ones who wanted to get on the phone and yell “OH MY GOD NO I JUST SAW HIM IN JANUARY WHAT HAPPENED?” (There is an email version of this too — one of my aunts wrote to me in a huff: he didn’t tell me he was this bad when I spoke to him. As if that were the last word on my father’s condition).
Let’s talk about the second group first. These people will also say things like “But Parkinson’s is so treatable!” (Yes, but eventually it isn’t). Or “Have you gotten a second opinion?” (Second opinion on what? Being 84?). Or my favorite, “But 84 is so young!” (Is it? Is it really?). These are also the people who have no problem asking about your financial situation and asking point-blank: “how are you paying for this?!” I understand the curiosity, I really do. But manners still matter.
With these folks, I found myself back on my heels, answering their panicked questions, feeling my own blood pressure rise, until I realized, Wait a second, they’re panicking about aging themselves.
After that, I gave everyone a little disclaimer in my follow-up emails in which I explained that hospice was out but assisted living was in. It went something like this: “Dear so-and-so, here is an update on my Dad. We would love to hear from you, but we are allergic to anxiety and panic at this time so if this situation is hard for you to discuss, let’s wait until he’s settled.”
On the flip side, the people who offer concrete help are heroes. These are the people who offered to FaceTime my dad more often, to play chess with him online, who offered to move his stuff, to walk my dog when I was out of the house for hours. No panicked phone calls, no making me second-guess myself, just good old-fashioned help. Keep these people in your orbit.
What About COVID? Aren’t assisted living facilities hotbeds of COVID?
Well, this one isn’t. Dad had to get a COVID test with results within 48 hours of his move-in date, which meant that we paid a fancy concierge medical practice to come to his house and send the test to a secret special lab for the low price of $1,200. (If you wondered how those basketball players were getting tests before anyone else, I think this is how).
This is a bonkers amount of money, but we had no choice: it was either an assisted living facility or days of being immobile in his own home with a home health care aide that won’t play by the rules.
Once he goes in, he’ll have to quarantine for 14 days, and then visits are allowed outside. This is one of those moments in life in which I wish the facts were different. But the facts are the facts, and so we are doing the best we can with the cards we were dealt.
Make decisions in 90-day increments.
Things will change on a dime. At first, I thought Dad would be staying at home, so I had a wheelchair ramp built in front of the house. Now, he will have used that ramp for a sum total of about two weeks. Similarly, in a panic I tried to refinance my parents’ house, thinking we needed the extra cash — until someone gently reminded me that people with advanced Parkinson’s can, well, die. And if that happens sooner rather than later, then there’s no reason for extra cash.
So I’ve settled on planning three months at a time: for the next three months, Dad will be at a fantastic assisted living place, with nice people who serve root beer floats every day at 3 p.m. If after the three months he is alive and likes his new place, we’ll look into refinancing. Or he may die. Or he may want to come home.
Ultimately, as someone who lives for a long-term plan, this is torture for me. But it’s the only way to handle a constantly evolving situation.
Would I have preferred not to experience the last month of sadness and uncertainty and fear? Yes, because it sucked. But I’d be lying if I said I hadn’t learned important lessons about decision-making in times of overwhelming emotion. In sharing them here, I hope that they might help someone else in the same situation.