A Disease Took Her Mobility. Now, at 70, She Could Lose Her Home.

When Karen Mickett wants to send a text, she calls out to Siri or taps on her phone with her right big toe, the only one she can still move independently. That touch of skin to screen — and her still strong voice — link her to the world outside her apartment.

Three years ago, Mickett, who is 70, was diagnosed with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that leaves patients unable to voluntarily control their muscles. Mickett has lost the ability to walk, to move her arms, and to lift her head. There is no known cure for the disease. 

At the time she received her ALS diagnosis, she was a human resource manager at a construction firm, a job she loved. “You have no idea how much I love it,” she said one day last fall. She spoke in the present tense about the work because she is still employed at the firm, between 16 and 20 hours a week, scheduling interviews for job applicants. 

“I’m always working. If I got a call right now, I’d answer it,” she said.

Mickett’s beloved dog Stuffy looks up from Mickett’s feet. Diagnosed with ALS three years ago, Mickett still has mobility in her right big toe, which she uses to operate her smartphone.

It’s not only for love that Mickett does this work. She needs the money to afford rents on Los Angeles’ Westside. She makes $1,200 per month along with her $1,100 monthly Social Security check, barely covering her current rent of just under $2,000. Her income will not be enough to stay in West Los Angeles, where the average monthly rent for a one-bedroom apartment is $3,055, according to Apartments.com. She said she earns too much to qualify for food stamps (now known in California as the CalFresh program), which is available to households earning income below the poverty line. 

Last May, as Mickett’s neck muscles began to weaken and she started to lose the ability to hold her head up, neighbors told her that her landlord planned to evict tenants from all 577 occupied units in the complex where she had lived for 11 years. She had not seen the notice affixed to her door because she is not able to walk. The eviction at Barrington Plaza is the largest from rent controlled housing in at least four decades.

One evening, Mickett sat in her wheelchair, her hands tucked, as usual, between her legs, worrying. Her dog, Stuffy, ran around the apartment. “I can’t even begin to tell you how devastating this is,” she said of the impending eviction. She thinks the prospect of losing her home has contributed to the progression of her ALS. “For sure the stress has made it worse,” she said.

It has taken her time to assemble a team of caregivers. One checks on her twice in the middle of the night. Another aide carries her “like a fireman” around the apartment and helps her shower. Mickett will lose her nighttime caretaker when she leaves — the one “who makes everything work” — because the woman works nearby. Mickett receives the maximum allowable hours for in-home supportive services from L.A. County: 283 hours per month. That benefit pays for caregivers to come to her home and look after her. Like 93% of Americans over 50, she lacks long-term care insurance. “I never considered getting it because it seemed ridiculously expensive,” she said. 

Sometimes her neighbors step in. “I have one friend. She comes home at about 7:30 p.m. I can call her and tell her to stop by and put my lights on,” she said. There are the twins in Building C who also check in on her. “They’re like angels from heaven. I swear,” said Mickett. If she moves, she will lose these connections as well. 

Mickett is pictured alongside one of her aides. Mickett will have to reassemble her team of caregivers when she relocates from her apartment.

Barrington Plaza is in the midst of a lawsuit by tenants against the landlord, Douglas Emmett Inc. The suit to halt the evictions alleges that the company is violating local and state tenant protection laws, including the Ellis Act, a state law that is used by property owners exiting the rental business.

On some weekends, the tenants meet for coffee by the complex’s Olympic-sized swimming pool, exchanging complaints about the landlord and updates about the legal case. Mickett joins the poolside meetings when she can, always taking Stuffy with her. 

More than 400 units have already been emptied. But elderly and disabled tenants have until May 8 to move out. These are tenants who often have the most difficulty finding adequate housing. Barrington Plaza is the rare rent controlled apartment building that offers 24-hour security. “There’s always somebody there, you know, to open the door,” Mickett said.

Evictions are on the rise, exceeding pre-pandemic levels in California and in cities across the country. The immediate culprit for the spike is the expiration of COVID-era eviction protections. “The hardest hit are those who are disabled or seniors, who rely on friends and family and social networks,” said Larry Gross, executive director of Coalition for Economic Survival, which is assisting the tenant group in its lawsuit against Douglas Emmett Inc. Gross said he fears an increase in homelessness.

Mickett will receive relocation money from the landlord. The amount tenants will receive varies depending on how long they have lived in a unit. She said she expects to receive about $19,000 from the landlord. The apartments she sees online rent for between $500 and $1,000 more than the $1,975 she currently pays (excluding utilities). The relocation funds will defray her increased costs initially, but soon she’ll need to somehow shoulder the additional expense, she said. Apartments are plentiful, she said. “The bottom line is, I can’t afford any of them.”

That is a challenge faced by renters across Los Angeles and nationally: a lack of affordable rental housing. “The vast majority of new supply that’s coming online, in terms of multifamily rentals, are typically luxury-type properties,” said Jay Lybik, an analyst at CoStar Group Inc., a Washington, D.C.-based research and marketing firm. In fact, tenants say that Barrington Plaza’s landlord is emptying the building of its occupants in order to turn it into one of those luxury properties.

Mickett receives help with her smartphone.

At the behest of the city, Douglas Emmett has provided extra help finding an apartment. But Mickett said the company in charge of relocation assistance has shown her apartments that will not work for her. “Their claim of having a relocation service is actually a joke,” she said. “Everything either has stairs or, for various reasons, I wouldn’t be able to live there.” In mid-February, as the eviction date approached, Mickett began to relax her criteria. She was open to forgoing building security and said that the complex’s manager had assisted her in identifying potential apartments in Marina del Rey that might be suitable.

If it were up to her, she would move to an assisted living facility, where she could enjoy a private living space while receiving support for her daily activities. But she says they are far too expensive, between $8,000 and $10,000 per month, she said (given the level of care she would require). 

Three years ago, Mickett began to experience her first symptoms of ALS, a weakening in one arm that did not initially keep her from her active life. “I could still do cartwheels,” she said. About 10% of people with ALS survive 10 years or longer. The average survival time after the onset of symptoms is two to five years. Most people with the disease eventually lose the ability to talk and swallow. In later stages, the disease affects their lungs and their ability to breathe. When asked about her need for more help in the future, Mickett responded sharply: “If I go to a nursing home, if that’s what you’re suggesting, I’d probably be dead in six months.” She added, “I’m living for today.”

When Mickett moved into the Barrington Plaza apartment more than a decade ago, she was an avid tennis player who loved to kayak. She fell hard for her new home in the Mad Men-era towers that loom over Wilshire Boulevard.

There was the panoramic view, the elevator conversations with neighbors, and a Westside location that put her near her favorite spots, including the Beverly Hills Neiman Marcus where the bartender on the fourth floor knows to pour her a key lime martini. As her health deteriorated, the 15th floor view from her apartment has remained a consolation.

Mickett fusses over her dog Stuffy.

Mickett is committed to finding joy where she can. That often means leaving her beloved apartment for excursions with her 35-year-old daughter or a friend. Recent outings include visits to Gladstones Restaurant in Malibu, the Downtown Disney shopping district, the dry cleaners and Costco. For these trips, Mickett relies on Access Paratransit, the county-provided van service for people with disabilities, which meets her in the complex’s parking lot. “I’m always out,” she said. When she goes to a restaurant, she will typically buy a drink and no more. “I don’t indulge,” she said. In any case, her illness imposes limitations. She can eat only while lying down.

Mickett is awaiting the outcome of an April 15 court hearing in Los Angeles County Superior Court where the tenants’ lawsuit could be decided, according to Frances Campbell, the attorney who represents the tenants. If it goes her way, “All the evictions will fall away,” according to Campbell. Mickett will be able to spend more time in the apartment that she loves. If not, she will join the remaining tenants in the building and leave the complex by the May 8 deadline. 

On the days she does not have a trip planned, she will sometimes have an aide take her to the plaza outside her building. “Wherever the sun is, that’s where I sit,” she said. As the evictions continue, she is increasingly less likely to run into a neighbor. Sometimes only one will walk by. Still, even as the buildings empty out, she remains attached to her home.

“I’ll live here by myself if I have to,” she said.

Copyright 2024 Capital & Main.

All photos by Barbara Davidson.