On Siloing the Elderly

Dear Alex,

I hope you enjoyed your trip to Europe. They have such pretty castles there. I am doing fine. I wish I heard from you more. I would appreciate another puzzle or two. The garden is doing well.

Love, Mom

Barbara, the author of the poignant letter above, is a 90-year-old assisted living and palliative care patient with Parkinson’s disease. I met her six months ago when I showed up to her room and tried to explain that I was a volunteer available to help out as needed. Barbara was uneasy and confused at first, but I quickly proved myself useful by serving as her scribe. With limited command of her phone and tremors that had recently rendered her penmanship illegible, Barbara had no real way to initiate communication with the outside world. On the first day I met her, I became her voice. Through penning these weekly letters and reading aloud their responses, I inadvertently became entangled in the modern struggle of a dispersed family trying to honor and care for an aging parent.

The essay that follows is just one story, but the situation plays out in similar ways across the United States. Each family’s efforts are punctuated by their wealth and access to resources. 6% of seniors live in either nursing homes or assisted living facilities, a number which is only rising. 7 of 10 seniors require a form of assisted living at some point. As Atul Gawande notes in Being Mortal, what we do with the elderly is one of the great problems of our time.

Gawande writes at length about hospice and palliative care, an increasingly popular solution to the aging problem. With medical advances and improved standards of living, people can outlive their physical health and mental acuity. Most geriatric patients are treated like any other patient: solve their medical problems and preserve life. As Gawande eloquently points out, optimizing for time alive can be dehumanizing. In practice, it involves removing most freedoms from the elderly and placing them in highly-restrictive nursing homes where they are closely monitored. Gawande argues that the treatment goals for a patient at end of life should be different from those of patients with likely recoveries. Hospice and palliative care seeks to offer a better balance between preserving life and preserving dignity, between medical intervention and living one’s last days in relative comfort.¹

The old people prisons (nursing homes, assisted living facilities, and hospices) we have contrived to house the seniors who require medical care are by nature depressing places, but if you look past their morbid subtext, there are bright spots. For example, Barbara’s assisted living facility has a sense of community; she is surrounded by people her age. They share meals. They do jigsaw puzzles and play cards together. They gossip. There is greater freedom compared to other, more clinical old people prisons; Barbara was able to start a garden at her facility. She collaborates with other residents to tend the garden and shares the fruits of her labor with her neighbors. I was fortunate enough to play a role in harvesting the first carrot of the season, which Barbara gifted to the other Barbara in the facility, who “really loves carrots.” A nice moment like this might be impossible at a nursing home, where going outside and engaging in physical labor in the garden might be seen as unnecessary risks.

Barbara’s great-granddaughter: Is this a good place for grandma? Everyone here is in a wheel chair!

Barbara: It’s tolerable.

Despite the freedoms that come with a facility focused on palliative care, Barbara’s existence is lonely. The hallways are almost always empty when I visit. The residents are usually tucked away in their rooms and everything is quiet, save for the ambient noise of a person with hearing loss trying to watch Fox news. The staff is kind but overworked and companionship is beyond their job description. Visitors are rare. As a result, Barbara reluctantly spends most of the day in bed watching old Westerns or sleeping. Her eyes light up when she receives a visitor. I swear, the nonagenarian hops out of bed like Uncle Joe when Charlie gets the Golden Ticket. She is eager to go outside and breathe the fresh air or to check on her garden to see if any tomatoes have ripened. There is at once a strikingly sad solitude and the potential of a fulfilled life.

What can be done about this pervasive loneliness? Is it unavoidable that our elderly loved ones be lonely? After all, plenty of young people who still possess the faculties to fully interact with the world are lonely. In some ways, loneliness is the byproduct of the increasingly solitary interactions modern technology enables (video games, remote work, streaming, etc.). Perhaps these more modern things have left the nursing home crowd behind, leaving them with the extra loneliness but none of the benefits. While a focus on palliative care has the potential to be a big part of the solution to the aging problem, in practice, it has the same flaw as the nursing home: it lets us off the hook by allowing us to sequester the old with the convenient excuse of medical necessity. Here’s my rough reconstruction of how it played out for Barbara’s daughter and primary caretaker:

Mom has been having some health issues and things have gotten worse. She’s had regular falls. A medical professional finally tells you that Mom needs full-time care. This is your permission to let go. It’s relieving but also strikes you with guilt. You know what those places are like. But someone told you it was medically necessary, so what choice do you have? You send Mom off. You visit often, at first. You notice the flaws in the place, the things that keep it from being a home. Things are sterile but dirty. The decor is tacky. Its 76 degrees, but still feels cold to any observant visitor.

You also notice the nice things. You focus on the nice things. Mom has some friends her age. They talk about growing up during the depression and the war(s). She has medical care next door when she falls. She can garden and play cards. Eventually, the guilt wanes and the visits taper off. Work is busy, the kids are busy, life is busy, there are other relationships with longer horizons that need tending, etc. But Mom has her friends and her puzzles. Her letters become illegible. They never reach you because the postal service can’t decipher the address. Even if they miraculously did, you wouldn’t be able to read the contents. You are able to care for her from a distance: you buy her weekly grocery deliveries and Mexican take-out on Saturdays. She thanks you for the chocolates when she sees you.

It’s easy to go a while without seeing her. You don’t hear from her and your distracted brain only surfaces her memory on occasion. Your weekly visits have become bimonthly, and unreliable at that. And then you get a letter that’s legible. It’s written by some random volunteer who people believe is either a grandson or a criminal performing court-ordered community service. Despite Mom’s old age, she has not lost her skill at manipulation. She subtly shames you for not calling, for taking European vacations while she rots in an old people prison. So you send 15 puzzles her way and buy yourself a few weeks of guilt-free existence.

Mom,

I’m sorry for not visiting as frequently as I’d like to. I will do better. The vacation was spectacular. I’ve included some pictures we took. I’ve sent 15 puzzles. I hope you enjoy them.

Love, Alex

How can we move forward with a more dignified way for the elderly who require medical care to live out their days? Fortunately, many people are busy coming up with solutions and there is considerable innovation in the landscape of caring for the elderly. Of course, there are the conventional old people prisons: nursing homes, assisted-living facilities and hospices. There are also more niche initiatives, like the Green House Project, which seeks to create more communal, home-like alternatives to the nursing home. For those that would prefer to remain in the communities they’ve lived in for decades, there’s the village concept, where people create networks of older residents and community volunteers that band together and provide mutual support. A few fortunate individuals can afford to stay in their homes and pay for at-home care. At this point, the niche solutions remain niche; nothing scales quite like the cold efficiency of the nursing home. The Green House Project, for example, is more expensive than a nursing home, has high-startup costs, and scaling issues; a network of 20-person residences will never service the 7 million Americans over the age of 85. The village concept is also expensive, as it relies on older people being able to afford to continue living in their homes and paying property taxes. There will likely never be a universal solution, and that’s probably a good thing. People have different needs and they should have plenty of options. But most people don’t have multiple options. Moreover, the poorest Americans’ only choice is often a drab Medicaid-funded nursing home. Even more concerning is the rise in for-profit hospice scams that end up abusing society’s most vulnerable. Absent drastic changes in Medicaid and Social Security, a better world for the elderly probably requires community and magnanimity. And we’re hurting for community and magnanimity.²

Many of the issues faced by those in nursing homes stem from loneliness and the need for companionship. If you ask Barbara, things aren’t so bad except that she’s bored all the time. The loneliness problem can be cushioned by a particularly dedicated family member who devotes a significant portion of their life to caring for an aging relative. For those without families, it takes volunteers in the community. People with energy need to organize activities for the elderly and keep them company. Big Brother programs for seniors (Little Brother?). If the name of the game is volunteer labor, there’s considerable untapped potential in the youth. Various fledgling programs exist that seek to pair teenagers or college students with old folks or those otherwise in need of companionship, but none exist at a scale that can put a dent in the problem. Barbara, for example, lives across from a high school, but the high school might as well not exist to the residents. There are plenty of volunteer clubs at any given high school; what if working at the local hospice became a high-status volunteer opportunity that was valued by college admissions committees? A program like this would obviously benefit the lonely elderly people, but it would also benefit the youth. They would have the opportunity to learn from someone with considerable life experience and it would probably be one of the more rewarding things they’ve ever done. They would be forced to contend with their own mortality, a harrowing process that is essential for truly reaching adulthood.

Briefly, I recommend dedicating some time to providing companionship for our siloed Silent Generation. Spend time with your parents/grandparents, and if they don’t need it, spend time with someone else’s parents/grandparents. It’s obvious how valuable even a few hours a week of company is to those who are truly lonely.