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Caring for a sibling with mental illness

Caring for a sibling with mental illness

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When sisters Jean and Ruby were growing up in Harlem, they invented a game of make-believe called “Eartha.” The little girls would put on their prettiest dresses and shiniest shoes and sit down to tea as grown-up ladies. They discussed details of their hoped-for husbands and children, and all the exciting things they would do together.

But 45 years later, the sisters’ lives are nothing like they imagined. Ruby Wilson, 54, has paranoid schizophrenia and lives in an assisted living facility in North Carolina. Her sister Jean Moore, 57, is her legal guardian.

“You have all these thoughts about how things should be, could be, how you’d like them to be. And they’re just not going to be,” says Jean, a nonprofit consultant who lives in Maryland.

Few bonds are as tight as those between sisters, and despite everything, Jean and Ruby remain close. “Our bond is inseparable. It feels like more than just two separate things bonded together. It feels like you’re really in there — you know, when you put sugar in tea and it dissolves? Yeah, it’s like that,” Jean explained.

But their relationship, marred by mental illness, has not been simple. Being Ruby’s guardian and caretaker is an enormous responsibility, and even all these years later, Jean still mourns the loss of the life her sister might have had.

Tight-Knit And ‘Always On Time’

On a sunny day this winter, Jean made the five-hour drive from Maryland to see her sister in the small town of Clinton, N.C., just east of Fayetteville.

Ruby sat in her room alone, wearing a denim dress with her hair piled high on her head and her nails painted red. She gave her sister a wide, gummy grin. After 30 years cycling in and out of hospitals, group homes, assisted living facilities and sometimes the street, Ruby has lost most of her front teeth. Jean smiled back, squeezing Ruby’s shoulders. These days, Ruby has few other visitors.

“Jean is splendid,” said Ruby. “She’s always on time. She’s very considerate. She’s very caring. She’s very nurturing. She’s really like a mother figure to me.”

Jean was surprised by Ruby’s words of praise. “There are times when Ruby will say I’m not her sister. So this is a good day,” she said and gave a half-hearted laugh.

You have all these thoughts about how things should be, could be, how you’d like them to be. And they’re just not going to be.

Jean Moore

Things Come Undone

On the back patio of the facility, surrounded by a chain-link fence, Ruby said that she and her sister, just two years apart, were raised “almost like twins.”

“They used to say our name as JeannieandRuby. It was like one person,” added Jean. They dressed in identical outfits and went together to piano lessons and ballet classes.

But when the girls became teenagers, their lives began to diverge. Jean was focused on school, while Ruby was more of a social butterfly. In high school, Ruby started spending time with kids their mother worried were a bad influence and started experimenting with drugs.

Ruby had her first baby at age 17 and quickly fell into a depression. As sadness descended into psychosis, she was diagnosed with paranoid schizophrenia. Whenever she had a psychotic episode, Ruby would be hospitalized. But her treatment was scattered and inconsistent over the next 35 years, and she continued to spiral downward.

Schizophrenia affects about 1 percent of Americans and is believed to be caused by a combination of genetic and environmental factors. Patients often suffer from hallucinations, delusions and difficulty focusing; usually, symptoms begin between 16 and 30 years old.

Ruby moved with the baby from New York to the small city of Washington, N.C., where the sisters’ grandmother lived. Two years later, Ruby lost custody of her son, and he was sent back to Harlem to live with her mother. Ruby stayed in North Carolina, and ended up homeless. She was self-medicating with illicit drugs, eating at food kitchens and staying in shelters.

But for Jean, one thing is certain: “Ruby’s a survivor.” On average, women with schizophrenia die 12 years earlier than the general population.

Meanwhile, Jean went to college, got married and spent a decade in the military overseas, where, inspired by her sister, she asked to work in behavioral health for military personnel and their families. She went to law school, got divorced and spent a few years doing development work in Africa. By the time Jean returned to the United States and met her second husband, Ruby had become estranged from the family and was living on her own in North Carolina.

“I just couldn’t stand knowing she was in that condition and not getting the help she needed,” said Jean. So she drove down to North Carolina to find her sister. It’s a small town, and after asking around, she found Ruby walking the streets.

‘Like Staying On A Wild Horse’

An estimated 8.4 million Americans are caregivers to adult loved ones with a mental illness, most often a son or daughter, parent, spouse or sibling.

“Caregiving situations for siblings pack an extra emotional punch for the caregiver,” said John Schall, who runs the Caregiver Action Network, a nonprofit organization that supports people providing care to loved ones. “It’s not unusual for us to think at some point of being the caregiver for our elderly parents, but it’s a whole different thing to be a caregiver for a sibling who we always thought of as equals.”

When it comes to caring for Ruby, “Jeannie has always been the lead,” said Ardella Wilson, Jean and Ruby’s older sister. Jean visited North Carolina as often as possible to “scout Ruby out” and make sure she was surviving. “Jeannie knows how to talk to her,” added Ardella. Ruby would sometimes make biting comments to both her sisters, but Jean always seemed to come up with the right response that allowed them all to move on.

At first, Jean’s role caring for her sister and trying to manage her medical treatment was unofficial. But in 2010, Jean got a call from a case manager: Ruby would become a ward of the state unless Jean wanted to become her legal guardian. So, Jean stepped up, formalizing the role she’d been serving for years.

One in 3 caregivers of people with mental illness have some type of legal responsibility for a loved one, such as guardianship or power of attorney.

The new role gave Jean more power to get access to Ruby’s health information and to help keep her safe, but finding the appropriate care for Ruby remained an challenge. “You have to be so proactive as a guardian. It’s a full-time job,” said Jean.

In addition to her responsibilities for Ruby, Jean was trying to get her own career off the ground in Maryland. She wanted to pass the bar exam so she could become a practicing lawyer, but there was always something else to handle. It wasn’t just her sister. Although Jean never had children of her own, she stepped in to help take care of Ruby’s now three children, supporting them emotionally and financially. The youngest came to live with her in high school, and over the years, Jean had become an important figure in the lives of Ruby’s grandchildren as well.

In the past, hundreds of thousands of patients like Ruby were housed in state mental hospitals. Most of those hospitals were closed beginning in the 1960s, as part of the “deinstitutionalization” movement to get people with mental illnesses back into the community. Today, alternative housing arrangements can be scarce and imperfect, leaving many people with serious mental illnesses homeless or in jails or shelters. Jean didn’t want that for her sister.

But each time she tried to get help for Ruby, something seemed to go wrong. Ruby would refuse to take medication and then disappear for long periods, only resurfacing when she was arrested or sent to a psychiatric hospital. “For a while, it was like a revolving door in and out of the hospital,” Jean recalled.

Every time Ruby was discharged, it was an enormous struggle to find somewhere for her to live. Part of Ruby’s mental illness is that she doesn’t recognize she is sick, which made her a difficult patient; she refused to take her medications and tried to run away several times.

Some facilities refused to accept her because she was considered a flight risk. Others said they were full or did not accept her insurance. Others were unaffordable; the money Ruby gets each month from Social Security often wasn’t enough to pay for the cost of the private facilities where space was available.

The hospital staff would call dozens of group homes and assisted living facilities before landing on one that would agree to accept Ruby. Those placements never lasted long. The facilities claimed to be secure, but Ruby would inevitably run away and end up back at another psychiatric hospital, only to repeat the process. “It’s like staying on a wild horse,” said Jean. She started to worry that the right place for Ruby might not exist.

“The options [for mental health services] now are almost nonexistent in many ways,” said Jane Hamilton, a psychiatric nurse who runs Partners on the Path, an organization that provides support to caregivers. “People in rural settings have a harder time than people in an urban setting,” because there are fewer facilities. “But the funding for mental health care is not adequate anywhere to meet the needs of the people who need support. So people fall through the cracks.”

A Place For Ruby

During a recent hospitalization, Ruby received an additional diagnosis of memory loss and was accepted into the locked memory unit of the assisted living facility in Clinton, which is usually reserved for dementia patients. It’s the most secure facility she’s been in so far, and Jean is pleased with her progress over the past year. Ruby has become more stable, even-tempered, personable and pleasant. Her old sense of good humor has started to return.

Still, the situation at Ruby’s assisted living facility is not ideal. The other residents are elderly and many are nonverbal, ravaged by years of Alzheimer’s disease and dementia. Ruby is lonely.

The sisters talk every week, but Jean has time to visit only every month or so, and then she can stay only a day. She worries it isn’t enough.

What just kind of rises to the top for me is this enormous amount of love that I have for my sister.

Jean Moore

Ruby has few other visitors. It’s hard for their 92-year-old mother to make the trek from the apartment in Harlem where she still lives. Ruby has 11 grandchildren and a great grandchild who live in North Carolina and Maryland, but she hasn’t seen them in years.

That means Jean is Ruby’s last real link to the outside world, and her visits are the only time Ruby gets to leave the facility.

The sisters tease each other, reminisce about playing dress-up as little girls and giggle conspiratorially about the oversized undergarments their mother sometimes sends.  When Ruby drifts onto a tangent that can be hard to follow, Jean quickly brings her back. She seems to understand and follow Ruby’s logic, even when it seems convoluted.

The Challenges Of Caregiving

Later, after dropping Ruby back at the facility, Jean explained that while she’d like to be closer to Ruby, she worries about finding the right facility in Maryland and fears that the state might not want to pay for a costly patient from another region.

She has thought about moving to North Carolina herself and possibly starting her own group home where Ruby could live, but she has her own husband, job and life to consider.

Psychiatric nurse Jane Hamilton said people often underestimate the emotional and physical cost of caregiving. Caregivers are twice as likely to be diagnosed with a chronic health condition, and Hamilton stresses that it’s crucial for caregivers to take care of their own physical, spiritual and emotional needs. “It’s not a guilty pleasure. It’s not a nicety. It’s not selfish,” Hamilton said.

Over the years, Jean has tried to embrace her many complex feelings by becoming active with the National Alliance on Mental Illness, a support and advocacy group for families of people with mental illness. “I think of it as a way to fight. Becoming an advocate offers an avenue to vent.” she said.

Trying to plan for Ruby’s future remains a painful struggle, even after all these years. The sisters have a history of mental illness in their family, and sometimes Jean wonders why this illness befell Ruby and not her?

“Ruby was always so full of life. She was the more attractive one, more stylish, she knew all the people on our block, she was social. And she was the one who had the children,” said Jean. More than anything, Jean said, she wishes she could have protected her little sister from the devastating effects of her illness.

She pulled out an old family photo of the sisters playing Eartha: two skinny-legged little girls in tights and skirts, carefree and smiling as they clutch their cups of tea. JeannieandRuby, so close they could be twins. In Ruby, Jean sees the person she might have been had their fortunes been reversed.

“What just kind of rises to the top for me is this enormous amount of love that I have for my sister,” said Jean. As painful as her visits to North Carolina can be, she said, she wishes she could stay longer. “One day is not enough time to spend with my sister.”


Kaiser Health NewsThis article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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