Her Sister鈥檚 Keeper: Caring For A Sibling With Mental Illness
When sisters Jean and Ruby were growing up in Harlem, they invented a game of make-believe called 鈥淓artha.鈥� 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鈥� 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.
鈥淵ou have all these thoughts about how things should be, could be, how you鈥檇 like them to be. And they鈥檙e just not going to be,鈥� 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. 鈥淥ur bond is inseparable. It feels like more than just two separate things bonded together. It feels like you鈥檙e really in there 鈥� you know, when you put sugar in tea and it dissolves? Yeah, it鈥檚 like that,鈥� Jean explained.
Jean Moore (left) visits her sister Ruby Wilson in Clinton, N.C. 鈥淥ur bond is inseparable. 鈥� You know, when you put sugar in tea and it dissolves? Yeah, it鈥檚 like that,鈥� Jean says. (Andrew Craft for Kaiser Health News)
But their relationship, marred by mental illness, has not been simple. Being Ruby鈥檚 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 鈥楢lways On Time鈥�
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鈥檚 shoulders. These days, Ruby has few other visitors.
鈥淛ean is splendid,鈥� said Ruby. 鈥淪he鈥檚 always on time. She鈥檚 very considerate. She鈥檚 very caring. She鈥檚 very nurturing. She鈥檚 really like a mother figure to me.鈥�
Jean was surprised by Ruby鈥檚 words of praise. 鈥淭here are times when Ruby will say I鈥檓 not her sister. So this is a good day,鈥� she said and gave a half-hearted laugh.
You have all these thoughts about how things should be, could be, how you鈥檇 like them to be. And they鈥檙e just not going to be.
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 鈥渁lmost like twins.鈥�
鈥淭hey used to say our name as JeannieandRuby. It was like one person,鈥� 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.
Ruby Wilson (left) and her sister Jean Moore sip drinks as they talk about family. Ruby has paranoid schizophrenia and Jean is her legal guardian. (Andrew Craft for Kaiser Health News)
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鈥� 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: 鈥淩uby鈥檚 a survivor.鈥� On 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.
鈥淚 just couldn鈥檛 stand knowing she was in that condition and not getting the help she needed,鈥� said Jean. So she drove down to North Carolina to find her sister. It鈥檚 a small town, and after asking around, she found Ruby walking the streets.
Jean Moore (left) fixes her sister鈥檚 collar while taking a break from shopping on Oct. 12, 2017, in Clinton, N.C. (Andrew Craft for Kaiser Health News)
Jean Moore, a nonprofit consultant who lives in Maryland, regularly makes the five-hour drive down to Clinton, N.C., to be with her sister Ruby. (Andrew Craft for Kaiser Health News)
鈥楲ike Staying On A Wild Horse鈥�
Americans are caregivers to adult loved ones with a mental illness, most often a son or daughter, parent, spouse or sibling.
鈥淐aregiving situations for siblings pack an extra emotional punch for the caregiver,鈥� said John Schall, who runs the Caregiver Action Network, a nonprofit organization that supports people providing care to loved ones. 鈥淚t鈥檚 not unusual for us to think at some point of being the caregiver for our elderly parents, but it鈥檚 a whole different thing to be a caregiver for a sibling who we always thought of as equals.鈥�
When it comes to caring for Ruby, 鈥淛eannie has always been the lead,鈥� said Ardella Wilson, Jean and Ruby鈥檚 older sister. Jean visited North Carolina as often as possible to 鈥渟cout Ruby out鈥� and make sure she was surviving. 鈥淛eannie knows how to talk to her,鈥� 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鈥檚 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鈥檇 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鈥檚 health information and to help keep her safe, but finding the appropriate care for Ruby remained a challenge. 鈥淵ou have to be so proactive as a guardian. It鈥檚 a full-time job,鈥� 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鈥檛 just her sister. Although Jean never had children of her own, she stepped in to help take care of Ruby鈥檚 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鈥檚 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 鈥渄einstitutionalization鈥� 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鈥檛 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. 鈥淔or a while, it was like a revolving door in and out of the hospital,鈥� Jean recalled.
Every time Ruby was discharged, it was an enormous struggle to find somewhere for her to live. Part of Ruby鈥檚 mental illness is that she doesn鈥檛 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鈥檛 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. 鈥淚t鈥檚 like staying on a wild horse,鈥� said Jean. She started to worry that the right place for Ruby might not exist.
鈥淭he options [for mental health services] now are almost nonexistent in many ways,鈥� said Jane Hamilton, a psychiatric nurse who runs Partners on the Path, an organization that provides support to caregivers. 鈥淧eople in rural settings have a harder time than people in an urban setting,鈥� because there are fewer facilities. 鈥淏ut 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.鈥�
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鈥檚 the most secure facility she鈥檚 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鈥檚 assisted living facility is not ideal. The other residents are elderly and many are nonverbal, ravaged by years of Alzheimer鈥檚 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鈥檛 enough.
What just kind of rises to the top for me is this enormous amount of love that I have for my sister.
Ruby has few other visitors. It鈥檚 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鈥檛 seen them in years.
That means Jean is Ruby鈥檚 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. 聽When Ruby drifts onto a tangent that can be hard to follow, Jean quickly brings her back. She seems to understand and follow Ruby鈥檚 logic, even when it seems convoluted.
The Challenges Of Caregiving
Later, after dropping Ruby back at the facility, Jean explained that while she鈥檇 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鈥檚 crucial for caregivers to take care of their own physical, spiritual and emotional needs. 鈥淚t鈥檚 not a guilty pleasure. It鈥檚 not a nicety. It鈥檚 not selfish,鈥� 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. 鈥淚 think of it as a way to fight. Becoming an advocate offers an avenue to vent.鈥� she said.
Trying to plan for Ruby鈥檚 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?
鈥淩uby 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,鈥� 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.
鈥淲hat just kind of rises to the top for me is this enormous amount of love that I have for my sister,鈥� said Jean. As painful as her visits to North Carolina can be, she said, she wishes she could stay longer. 鈥淥ne day is not enough time to spend with my sister.鈥�