How Not to Grow Old in America

The assisted living industry is booming, by tapping into the fantasy that we can all be self-sufficient until we die. 

By Geeta Anand

Ms. Anand, formerly a reporter for The New York Times, is a professor at the University of California, Berkeley, Graduate School of Journalism.

Assisted living seems like the solution to everyone’s worries about old age. It’s built on the dream that we can grow old while being self-reliant and live that way until we die. That all you need is a tiny bit of help. That you would never want to be warehoused in a nursing home with round-the-clock caregivers. This is a powerful concept in a country built on independence and self-reliance.

The problem is that for most of us, it’s a lie. And we are all complicit in keeping it alive.

The assisted living industry, for one, has a financial interest in sustaining a belief in this old-age nirvana. Originally designed for people who were mostly independent, assisted living facilities have nearly tripled in number in the past 20 years to about 30,000 today. It’s a lucrative business: Investors in these facilities have enjoyed annual returns of nearly 15 percent over the past five years — higher than for hotels, office, retail and apartments, according to the National Investment Center for Seniors Housing and Care.

The children of seniors need to believe it, too. Many are working full time while also raising a family. Adding the care of elderly parents would be a crushing burden.

I know this fantasy well. When my parents, who were then in their 70s, were unable to take care of themselves, I bought an apartment in Brooklyn that was big enough to fit them, in addition to my husband and our two young children. But then my husband lost his job in the Great Recession, and we could no longer afford the mortgage.

The only solution I could think of was to move. I took a job in India, where the dollar goes farther, so I could rent an apartment big enough to fit us all and hire helpers to care for my parents and children while my husband and I worked.Back then, I, too, dreamed about those assisted living facilities. My parents seemed so bored and lonely in my house. And it was hard for us to keep up with their ballooning needs. They grew so enormous that I eventually had to quit my job.

As I struggled to support my parents, assisted living became a private dream for my own old age.

Now that I am back in the United States, I have been thinking about assisted living again. My dad died in 2017, after living with us for nine years, and my 83-year-old mother now lives in New York City with my sister. Would assisted living offer our mother better care and relieve the pressure on my sister, who works full time while raising a young daughter?

Sadly, I’ve discovered the answer is no.

The irony of assisted living is, it’s great if you don’t need too much assistance. If you don’t, the social life, the spalike facilities, the myriad activities and the extensive menus might make assisted living the right choice. But if you have trouble walking or using the bathroom, or have dementia and sometimes wander off, assisting living facilities aren’t the answer, no matter how desperately we wish they were.

“They put their money into the physical plant. It’s gorgeous,” said Cristina Flores, a former home health care nurse who has a Ph.D. in nursing health policy, lectures in the gerontology program at San Francisco State University and runs three small group homes for the elderly. 

But when it comes to direct care, the facilities are often lacking. “The way they market everything is, it’s all about autonomy and independence, which are important concepts,” she said. Families and residents don’t realize that these facilities are not designed to provide more than minimal help and monitoring. Even those that advertise “24-hour” monitoring may have someone present round-the-clock on the premises, but may not have sufficient staff to actually monitor and assist the large number of residents.

“People’s defense against something horrible happening is, ‘Well, they have a right to be independent,” she said. “‘Yes, he did walk up the stairs with his walker and fall down and die, but he had a right to do that.’ That’s a horrible defense. You don’t just allow people to do unsafe things.” 

Most residents of assisted living need substantially more care than they are getting. Half of those residing in assisted living facilities in the United States are over the age of 85, the Centers for Disease Control reports. And this trend is accelerating. The number of people 85 years of age and older in the United States will nearly triple to about 18 million by 2050, according to the Census Bureau.

“When you say nursing home, people say, ‘Yuk,’” said Eric Carlson, the directing attorney for Justice in Aging, a national advocacy group for low-income older Americans. “When you say assisted living, a lot of people say, ‘That sounds good.’ Nobody realizes the system is broken.” When something bad happens to a resident of an assisted living facility, “They just think it was that facility that was horrible,” he says.

Part of the problem is a lack of regulation. Nursing homes are regulated and inspected and graded for quality to ensure that residents receive adequate care. The federal government does not license or oversee assisted living facilities, and states set minimal rules. Nursing homes are required to have medical directors on staff who review patient medications regularly, while there is usually no such requirement in assisted living.

Not surprisingly, complaints against assisted living facilities are mounting in courts around the country.

In June of last year, Claude Eugene Rogers, an 83-year-old retired Marine, suffered from heatstroke at an assisted living facility in Roseville, near Sacramento. He died a few days later. A state investigation said that he had been left on an outside patio in his wheelchair for one hour and 45 minutes or longer that morning, when local temperatures reached 93 degrees Fahrenheit. The state in July moved to revoke the facility’s license to operate, which it is fighting to retain, while denying any wrongdoing.

His family was devastated. They had chosen assisted living when his dementia grew more severe and his wife was no longer able to care for him at home. “We thought it was a nice place and the people there could provide great care and the other residents there would be friends for my dad,” his son, Jeffrey Rogers, told me.

Bonnie Walker, 90, who also suffered from dementia, wandered undetected out of an assisted living facility in South Carolina sometime after midnight in July 2016. According to a lawsuit, her remains were found eight hours later in a pond nearby, and her pacemaker was recovered from inside an alligator that lived on the property.

Her family, after struggling to care for her at home, had taken her to assisted living believing she would be safer. They visited her daily and took her home on Sundays. “My grandma deserved to have us there” when she died, her granddaughter, Stephanie Weaver, told me, “not to go the way she did.”

Ruth Gamba, 96, fell three times during her first month in a memory care unit of an assisted living facility in Fremont, Calif., her family said in a lawsuit against the facility. Memory care units are supposed to provide closer monitoring and care of patients with dementia. But in Mrs. Gamba’s most recent fall, she broke her hip and fractured her toes, her family said in the lawsuit.

Her son, Peter Gamba, a television editor in Los Angeles, told me that he and his sister moved their mother into the facility because it promised round-the-clock monitoring. More than 40 percent of people in assisted living have some form of dementia. Construction of memory care units in assisted living facilities is the fastest-growing segment of senior care. But assisted living, even memory care units, often aren’t the right place for people with dementia. In most states, there’s no requirement that these units be staffed with enough people or that they be properly trained.

Assisted living has a role to play for the fittest among the elderly, as was its original intent. But if it is to be a long-term solution for seniors who need substantial care, then it needs serious reform, including requirements for higher staffing levels and substantial training.

That will raise prices, and assisted living already costs between about $4,800, on average, each month, and nearly $6,500 if dementia care is needed, according to the National Investment Center, a group that analyzes senior housing reports.

Perhaps the United States can learn from Japan, which is a few decades ahead of us in grappling with how to care for its rapidly aging population. Japan created a national long-term-care insurance system that is mandatory. It is partly funded by the government but also by payroll taxes and additional insurance premiums charged to people age 40 and older. It is a family-based, community-based system, where the most popular services are heavily subsidized home help and adult day care. Japanese families still use nursing homes and assisted living facilities, but the emphasis is on supporting the elder population at home.

We need to let go of the ideal of being self-sufficient until death. Just as we don’t demand that our toddlers be self-reliant, Americans need to allow the reality of ourselves as dependent in our old age to percolate into our psyches and our nation’s social policies. Unless we face up to the reality of the needs of our aging population, the longevity we as a society have gained is going to be lived out miserably.

As Mr. Gamba told me, “There’s going to be lots and lots of old people dying left and right with nobody attending to them.”

And there’s a pretty good chance, I believe, that among those languishing there will be you and me.

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How Not to Grow Old in America

“They’ve Killed Her” – Retired Alabama Schoolteacher Dies under State Guardianship

By Terri LaPoint

“She’s gone.” The call came in Monday from Nancy Scott regarding her mother, Marian Leonard, who had been taken from her family and placed onto hospice care against her will. Nancy was in tears when she told me that her mother died on Saturday, August 24, but nobody bothered to notify her until Monday.

Marian Leonard died in a nursing home that she was forced into by a judge in early 2018. Last month, her court-appointed guardian Sidney Summey restricted her from having any visitors except a token hour and a half visit twice per month from her daughter – the woman that Mrs. Leonard had designated as her chosen power of attorney, not just once, but 3 different times over a 30 year period.

She died alone. No family or friends were permitted to be with her in her final weeks. The guardian had even taken her away from her roommate, whom Nancy viewed as her mother’s “guardian angel.”

Nancy, who has been fighting the court since custody of her mother was seized by the state, is devastated.

It’s like being in the middle of a horror story.

All her mother’s planning to ensure that she would live out her elderly years on her own terms vanished with the stroke of a judge’s pen, at the request of social workers from the Alabama Department of Human Resources (DHR) and St. Vincent’s Hospital. The simplest request, that her only daughter be with her at the end, was denied.

Nancy’s voice cracked as she cried:

I couldn’t save her. I tried so hard to get her out of there.Marian Leonard was known to her former English students as “Mrs. Gregory.” Yearbook photo provided by family.

Under Judge Alan King, Marian Leonard was forced onto hospice care, though there was never any diagnosis of terminal illness. The only “diagnosis” was typed into the records by woman later convicted of felony Tenn-Care fraud.

Lisa Fuller apparently posed as a nursing home nurse, and ER nurse, and ambulance service worker, as evidenced by her signature on documents from all three in Tennessee. Her notes in the records sent to St. Vincent’s Hospital in Birmingham, later obtained by Nancy Scott, are the only record stating that Mrs. Leonard had Alzheimers. Other medical records show that, just the year before, she had been pronounced by medical doctors to be free of any dementia or signs of Alzheimers.

“Murdered by Hospice”?

Since her mother was taken from her family, Nancy Scott has complained that her mother was being drugged. She was increasingly being given psychotropic drugs and strong pain-killers, against her previously stated wishes and against the wishes of her daughter, the person that she wanted to be in charge of her care. Yet, the strangers appointed to care for her ignored her pleas to see her daughter, to go home, and to get out of the nursing home. Why would they pay attention to her thoughts on being drugged?

Before being forced into Diversicare of Riverchase nursing home in Birmingham, Mrs. Leonard’s typical go-to medication for occasional flair-ups of arthritis pain was a single Tylenol. Recently, Nancy learned that hospice was giving her mother morphine.

We also learned through a source who asked to be unnamed that Mrs. Leonard was being given morphine much more frequently than every 6 hours. The source explained that dosage every 6 hours is what is given for pain, but when it is given more frequently than that, it is designed to be “part of the dying process.”

Marian Leonard, who was not dying, was being given drugs to “assist with the dying process.” The only “incurable condition” that Mrs. Leonard had was simple old age. She was 103. Nancy says that her mother’s age has been used many times by many people involved with her mother’s case to justify the treatment that her mother has received under state care.

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“They’ve Killed Her” – Retired Alabama Schoolteacher Dies under State Guardianship

Old Age Seen as Justification for Forcing Woman onto Hospice

By Terri LaPoint

The admission sounded like something out of “Logan’s Run” or other dystopian sci-fi movie, not an explanation one would expect to hear from legal associates. Nancy Scott and others who joined her in a peaceful prayer vigil for her mother’s life on Tuesday, August 20, were stunned when representatives from the court-appointed guardian’s office explained that the reason that retired Alabama schoolteacher Marian Leonard was on hospice was because she was old.

According to Medicare.gov, hospice care is supposed to be for people who are certified by a hospice doctor and the patient’s regular doctor that they are terminally ill with a “life expectancy of 6 months or less.” Hospice care is palliative, or “comfort” care, rather than curative care, and it is supposed to be a choice that the patient makes, not a decision thrust upon them without their consent.

That is not what has happened with Marian Leonard. When the state seized guardianship of Mrs. Leonard in February 2018 at the request of St. Vincent’s Hospital and the Department of Human Resources (DHR), she was forced into a nursing home, Diversicare of Riverchase, and forced onto hospice care, against her will and that of her designated Power of Attorney, her daughter Nancy Scott.

At that time, Marian Leonard pleaded with her daughter to get her out of there, saying she feared that they were going to kill her if she did not get out. Nancy Scott has been fighting ever since to free her mother from state custody. She has hired attorneys and gone to court, but has thus far been unsuccessful.

When Birmingham-area pro-life advocate Phil King saw Mrs. Leonard’s story, he called for a prayer vigil. A handful of supporters brought signs and prayers to the sidewalk in front of court-appointed guardian Sidney Summey’s office in downtown Birmingham Tuesday.

Photo by Sherrie Saunders

They were joined by a small group of people who stated that they worked for Summey’s office.

Nancy Scott took the opportunity to explain to them that her mother had never been diagnosed with any kind of terminal illness, and thus should not be on hospice. The only “diagnosis” was a fraudulent statement on a medical report by a convicted felon named Lisa Fuller that Marian had “End Stage Alzheimer?s [sic] Disease.”

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Old Age Seen as Justification for Forcing Woman onto Hospice

Dignity in Old Age

We are not equal in old age.

That's the tragic truth.

As equal as we are in human dignity and value in God's sight, some are treated very differently, especially as age limits physical ability.

Some have the advantage of family members who live nearby and can take time to be with them. Some have family with accessible homes who invite them in. Some have family who can ensure they have the best treatment in a senior residence.

Some don't.

Some have the advantage of money to pay for the best care.

Some don't.

In Huron, where I served before moving here, Medicaid-covered residents at the larger nursing home were two to a room, while others enjoyed single occupancy. When visiting people in nursing homes in Pierre, it is not hard to tell whose care is paid for by Medicaid. Often - not always, but often - that person's circumstances are worse.

For a younger person, we might encourage them to work harder and make more money, but someone well past retirement age? I don't think so.

Of Pierre's senior residences, assisted living facilities, and nursing homes, some are fantastic environments.

Some are not.

Caregivers and nursing home staff are well intentioned, work hard, and have so much kindness to share. But when staff are poorly treated or run ragged, residents are going to be poorly served.

We deserve equal dignity in old age. From the Ten Commandments on, God has always affirmed that, and will hold anyone accountable for not treating people with the dignity they deserve.

God commands "honor your father and mother that your days may be long in the land." So what can we do?

1. Live with elderly parents.

A friend of mine and her family are about to move into her mother's house to care for her in the midst of Parkinson's. That used to be common, but today it's rare. People living farther from parents as well as the economic realities of two income households and more irregular work hours make this harder, and the community (workplaces included) can support families in this. But there's also a cultural shift that needs to happen, and it's going to take bold people giving it a shot.

2. Advocate for elders.

There are some magnificent people who regularly volunteer their time to play music and visit people in nursing homes and assisting living. There ought to be more. Families and the professionals serving people are on the front lines, but the whole community can be invested in their well being.

3. Don't tolerate exploitation.

Exploiting elders for financial gain is an attack on the dignity of vulnerable people. God hates exploitation, and we should hate it too. Where we can, we should drive exploitation out of town, because we don't want that in our community.

Never treat someone with anything less than full human dignity, especially for your own financial gain. Whether in good health or in infirmity, treat elderly parents, neighbors, and fellow Pierre residents with honor.

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Dignity in Old Age