Tale of Two American Deaths

When a close girlfriend was recently in the market for an “assisted living” facility for her husband of 40 years, I volunteered to check out a few places for her. Her husband, who I’ll call Richard, had worsening dementia and, frail herself from multiple surgeries and the lingering effects of a brain aneurism, just couldn’t physically handle him anymore on her own. A retired teacher, she was terrified of both the ongoing cost of where he was, around $7,000 a month, and the quality of his care since he seemed to lie in bed staring at the ceiling for most of every day. 

I went to an assisted living facility close to my home where I had visited a friend in the last few months of his life. Pulling into the driveway of what looked like your standard 1960s ranch house in an unglamorous neighborhood, I hopefully got out of my car and walked up to the front door, passing no-landscape, no pond with ducks a’floating, no porch for settin’ on, no frills of any kind that I could see. How much could this plain-Jane option possibly cost? A cheerful young woman answered the door. During our brief conversation she told me that it cost $8,000 a month, $1,000 more than where Richard already lived. To put that dough in perspective, you could live in a $200-per-night hotel room for $6,000 a month, leaving $2,000 for food. For that $8,000 monthly fee you got no medical care of any kind, no transportation to any medical care. You did get meals in a cobbled-together dining area, some dubious “entertainment” options – presumably like the ubiquitous Bingo – and a bed to lie in during the day while you stared at the ceiling. And, natch, she added, no insurance covered the cost. It was strictly cash on the barrelhead, USD. I was in shock by this time and can’t remember whether she said six or eight old folks lived in that aging suburban “bed and board” rancher, but if it was six the monthly haul would be $48,000 a month. I left with a brochure to deliver the bad news to my girlfriend, who spent the final months of Richard’s life calculating how many more months she could afford to keep paying $7,000 a month before she ran out of money (or when her total assets, including her condo, fell below $2,000, at which point combo state/fed payments would kick in). More on that later. Institutionalized oldsters in America aren’t getting kicked out into the streets – yet. Be very afraid…

So that’s what you get if you’re rich enough to pay $96,000 a year indefinitely for a bed and three meals a day in a suburban house-turned-bed-and-board facility in the Bay Area. 

So what if you’re not rich?

If you are truly penniless, Medicaid (named Medi-Cal in California) will pay the difference between a recipient’s income (Social Security, for example) and the cost of a nursing home, which is a hospital-like, clinical setting. In part because Californians have become more comfortable with more informal assisted living arrangements than nursing homes, in 2019 the State of California extended for five years The Assisted Living Waiver Pilot Project, which as amended will pay assisted living residence expenses (under similar financial restrictions) if their cost is less than for a nursing home (and “quality” standards are met). The program is open to all state residents but only in the 15 counties with available providers. Mendocino and Lake counties are not among them on the state’s most recent 2020 list.     

Enter Arlene (her real name), my brother’s closest friend for the past 49 years. Arlene spent most of her 69 years taking care of other people until their deaths, caring for her mother, father, and sister throughout their chronic and ultimately terminal illnesses. She also took care of my brother through his many overdoses and rehabs. I still wrestle with the guilt of not taking him in myself but was working fulltime in San Francisco in those years and had two school-age kids living at home. In retrospect, exposure to the visible consequences of my brother’s drug use and withdrawals would probably have been a more valuable life lesson for my kids than my refusal to take him in (though I cowardly salved my conscience with the fact that my parents wouldn’t let him stay with them, either). 

Arlene lives in a subsidized senior apartment on the eastern edge of Concord, in Contra Costa County. She lives on Social Security, doesn’t own a car or drive, and lives more frugally than even my Norwegian grandmother, who at least could eat out of her garden in rural Oregon. She is deeply religious and personally spiritual, and the pastor of her nearby church coordinates what home care (a physical therapist) there is and communicates closely with my brother, who is her unpaid, sole caregiver three-and-a-half days a week. She’s never married and has no children or family. And like many older Californians, even though she’s poor and can only intermittently manage to walk the 20 feet from her bed to the bathroom, she’s not debilitated enough to qualify for a care facility that Medi-Cal would pay for. Not yet. 

Arlene’s life is a roadmap of what it’s like to weaken and die poor and alone in this country. She fell outside her apartment more than a year ago. The county hospital diagnosed “nerve damage,” apparently without any treatment options. She then spent six weeks in a rehab facility before being released back to her apartment, where her weight quickly plummeted to 85 pounds and she became too weak to navigate her tiny apartment. 

Enter my brother John (his real name), who has made the admirable personal commitment to reward Arlene’s many years of loyalty by taking care of her. His hours as a part-time intake coordinator for a San Francisco drug rehab facility on Market Street have been reduced to two days a week during these plague days (though, because it’s San Francisco, he still gets paid). This allows him the three-and-a-half days he spends at Arlene’s. Also without a car or a driver’s license, he starts out his journey east by catching the Muni on Judah, two blocks up from the beach. He then takes BART to Pleasant Hill, where he enters no-public-transportation suburban-land, where he takes various combinations of buses or Uber, depending on circumstances, for the last 10 miles to far-eastern Concord, land of the spread-out strip mall, where Arlene lives. He does all this toting 40 to 50 pounds of his personal stuff, food (for which he uncomplainingly spends half his income), and other supplies like incontinence pants (Arlene says to not call them diapers) and other necessities. All told, this one-way trip takes about two hours. When he gets there, often as not, he finds Arlene cheerful but lying in a puddle of urine because she wasn’t strong enough to get out of bed. She is unfailingly positive in an authentic way and John views her as a kind of saint. She doesn’t drink or do any drugs, including opiate painkillers she could get if she requested them. She chooses to see life as it is, both its physical pain and the miracle she sees in the huge tree outside her bedroom window.

In an effort to help John out I have read through what little paperwork there is on Arlene’s condition. She has some compromised kidney function but there’s evidence of little else other than the generic “nerve damage,” at least that I could see. I’ve had several well-insured friends with the same initial diagnosis who have gone on to arthroscopic surgeries that have made a world of difference to their mobility. I’m in the process of trying to find out more about her condition, to try to see if such a thing might be possible for Arlene, who is only 69 and has been otherwise healthy throughout her life. My husband and I also help out sometimes with John’s transportation to and fro, and pick up some requested items difficult for John to either find or carry, small contributions beside his enormous time and financial commitment.

These realities are mostly hidden from those of us who have been sheltered from the double whammy of elder decline and poverty. In retrospect I got off easy; my parents were only really sick for a couple months each and they could afford around-the-clock caregivers for that short time. Hospice filled in the blanks and John’s and my role was really to just visit with them until they died in their own beds, little hardship for me since I worked in San Francisco and went to their place, just a mile from mine, after work. There were inevitable mini-crises; it fell to me to get my father to stop driving, for example, but these were nothing compared with the hands-on care Arlene requires and John provides – and that many adult children provide for their parents. 

Arlene spent her life caring for her sick and dying family members, a caregiver’s life much lauded but little respected in our society, which prizes financial success and its wealth. True believers may tell us that the meek will inherit the Earth, but in the here and now they don’t prosper, especially if they’re also poor. My mother, a political activist all her life, used to say that it was too late to fix our government, that, in her words, “It all has to come down.” That’s the kind of rearrangement it might take to recreate a 1950s-like society that prioritized spending on programs that actually helped us through crises like Arlene’s. We’re far too wealthy a country to keep turning our backs and walking away.