Too Much Assist, Not Enough Living

Bored to death can be more than a figure of speech

A few weeks ago, in response to “On Purpose” where we talked about the struggle to find meaning in mom’s life once she moved to assisted living, I got a great book recommendation. Shout out here to Niki Elle, for suggesting “Being Mortal: Medicine and What Matters in the End.” by Atul Gawande. Niki is herself training to be a Death Doula, another concept I only recently discovered, and heartily applaud. I had heard of the book, which came out in 2014, the same year Nina was diagnosed with Alzheimer’s. Somehow, I’d never read it. 

Certainly none of her health care providers and professionals had suggested it, but I also wonder why-oh-why I did not discover it and read it then?  I think it is because at the time end-of-life—what we had just experienced as a sudden trauma with Dad—did not feel imminent with mom. It’s also a reflection of how stuck we were in our immediate situation; and more broadly of how reluctant we are as a culture to imagine, let alone discuss and plan, for death. Looking back, I wish my entire family and I had read this book. I highly recommend reading it at any stage of life, and here’s why.

Medicine and what matters in the end

Even more telling than Being Mortal’s subtitle, is the reader review form affixed to the jacket flap of the book by our library. On it, the book is rated 4/4, meaning: “Terrific. Be sure to read it.” The comments include:

•  “Important and humane. Beautifully written”

• “Excellent. Thought provoking. Necessary”

• “I wish he were at DH! (our local hospital)”

•  “A very important conversation that every family should have.”

Gawande’s collection of stories from more than 200 people, backed by data and his own experience as a surgeon, walks through real scenarios of aging and serious illness. His examples show the range of things—from the best and worst of assisted living, to difficult conversations, to a system for identifying personal priorities to understanding the role of Hospice (we are so going there!)—that can seriously impact quality of life near the end of life. His central point is that the way we take care of the elderly and the sick does not take into account their values and the specifics of what, for each individual, makes life worth living.

Along the way, Gawande identifies the “three plagues” that kill people in assisted living: Boredom, loneliness and helplessness. When I thought back to Nina’s assisted living experience, that hit home. Hard. Quite simply, Nina was bored.

A good idea, in theory

For decades now, I have joked with friends and relatives about moving to a commune when we are older, and how fun that would be. I envisioned a Cocoon-like set-up where we could live a slowed-down existence with fewer responsiblities, but enjoy the companionship of friends in an environment that still allowed for some shenanigans.

That vision is similar to the original version of Assisted Living, pioneered by Keren Brown Wilson in the 80’s, where people could live with as much autonomy as possible even as they became physically limited. Wilson’s successful experiment, Park Place Living Center, kick-started the massive assisted living industry. Along the way, however, the concept got co-opted by Wall St. and the medical profession. Assisted living became more institution than home—a way-station between indendent living and a nursing home, and a place where safety and medical treatment outweigh quality of life.

That was the vibe I felt, but could not articulate, in Nina’s new home (we’ll call it Sunset). I knew every place had some trade-offs, and Sunset’s were hard to see from the outside.

The Trade-offs

Visitors like us saw a beautiful location, perched along a ridge with expansive views; but, it was along a busy road so there was nowhere for residents to roam freely outside. There were weekly prearranged drives “off-campus” but no regular access to unplanned stimulation— no stores to visit, cafes to stop by, school kids to see on their way to and from the bus.

There were designated common areas, but no “collision points” that encouraged unplanned interactions around a shared interest or purpose. Despite the well-populated calendar of prearranged and orchestrated activities, there was no effort—like in the more progressive places Gawande described—to involve the residents in the day-to-day tasks that might have occupied and engaged them. These could be mundane things most residents had done all their lives on autopilot; things like setting the table, clearing the dishes, taking out garbage, arranging flowers, watering plants, etc., that also carry a sense of productivity. 

The food was pretty good, and somewhat healthy, but served restaurant style, with no access to the communal feel of a real kitchen. Meals were the only guaranteed daily social interactions to look forward to, so it was not surprising when Nina started gaining weight. This not only affected her mental state (she’d always had an uneasy relationship with her weight—another fun topic) but also her mobility.

That led to what bugged me most. There were no organized exercise classes or accessible exercise space, presumably because of the safety concerns. With so few opportunities to move, Nina added 20 pounds to her petite frame in just a few months.

A Mismatch

Sunset was probably a good set up for people with more independence who had the ability to escape—by driving, or by having a friend or a spouse or a pet. A couple with a cat lived across the hall from her. When their door opened I heard snippets of conversation and the TV in the background, caught a whiff of kitty litter, and got glimpses of a real life going on in there.

Nina had no such thing. She could no longer read, or figure out how to play music. With nothing but a mini fridge, cooking was out, though that wasn’t an entirely bad thing. She had a TV but had never been a real TV watcher (it was more of a social thing, and Buck maintained sole command of the remote). She could no longer use a computer even if she had one.

But, given the opportunity, she could interact in a community, even if most of the residents landed somewhere on the spectrum of MCI to Alzheimer’s.

Safety first, fun last

Nina’s baseline for everyday life included a high threshold for uncertainty and risk. In her own home she had maintained a vigorous “open-door” policy whereby you never knew who would walk around the corner and into the living room. She’d raised two kids who raced World Cup Downhill, going 80 mph on skis. Our living room featured a giant poster of her oldest daughter bungee jumping off the Golden Gate bridge. Living with Buck meant enduring the consequences of his regular crashes on skis, bikes, alpine slides—really anything where gravity, speed and poor judgment convened. Rolling with the punches, and the occasional mishap, was as much in her routine as brushing her teeth.

Now, she was in a weird zone between freedom and structure—a place where the daily rhythm was calibrated on meal times and the giant, Zamboni-like meds wagon that swept the halls morning and evening, dispensing little plastic condiment containers of pills to smooth out any rough spots. She was free to roam around inside at will, but with no destination.

The one big plus

We didn’t know what we didn’t know. Had I read Being Mortal in 2016, I would have understood these trade-offs better, but it would not likely have made any difference. The big thing Sunset provided, which trumped everything else, was proximity. Nina was within a ten-minute drive of both sisters, who, between them, visited daily. Beatie had exhaustively investigated all the options that were within range for those daily visits happen. Finding something that offered more freedom than Memory Care, but enough guard rails to keep mom safe, left few options.

Got any great assisted living or memory care recommendations? Please hit the comment button to share them!

It’s Science, Man

I’ve recently seen facilities currently available that are much better than our options. The innovative approaches Gawande had highlighted in 2014, based on common sense and thoughtful design, are now bolstered by the muscle of scientific proof. I hope that by now many more places routinely incorporate things like a healthy diet, regular exercise and meaningful social engagement that are among the 14 modifiable risk factors for dementia. Together these things can prevent nearly 50 percent of dementias, and all can be robustly incorporated into senior living.

That’s it for today. Everyone of you deserves a cookie after that. See you next week!