For years after her young-adult daughter Sarah was diagnosed with bipolar disorder, Marjorie Schaffer kept her head down, caring for Sarah and her sister and focusing on her work as a nursing professor at Bethel University.
Though Schaffer and her husband were dedicated to helping Sarah get the treatment she so desperately needed, they didn’t make time to connect with other parents and families in similar situations. Schaffer’s focus was on her daughter, not on herself.
“I was so busy working all those years,” she said. “I never took time out to get the support that I needed.”
Then a few years ago, Schaffer met Carol Webster. The two women had just taken an exercise class at their local community center, and they struck up a conversation.
“As we talked, we discovered we each had a daughter named Sarah,” Webster recalled. “Both girls were born in the same year, in the same month. They both had the same name. Both struggled with mental illness, although their mental illnesses were different.”
While Schaffer’s daughter has bipolar disorder, Webster’s daughter Sarah lives with schizophrenia. Though their daughters’ diagnoses were different, the two women quickly realized that they had much to talk about.
“All mental illnesses have a lot of common,” Webster explained. “And families go through so many similar things.”
Schaffer and Webster took long walks, and they’d often talk about life with their Sarahs. Webster, who was new to the state, learned about the mental health support and advocacy nonprofit NAMI Minnesota. She told her new friend about the organization’s “Family-to-Family” course, an eight-week class designed to help family members learn about mental health, the brain, treatment and resources to help a loved one living with a mental illness.
Schaffer and Webster decided to sign up for a Family-to-Family course. After a few meetings, Schaffer said she began to realize that even though she’d spent years focusing on her daughter’s mental illness, she still had much that she could learn from other families and their struggles.
“It was an ‘ah-ha’ moment,” she said. Her classmates and the group leader provided insight and experience that helped Schaffer see her daughter’s — and her own — journey in a new light.
“Even though I had worked [as a nurse] in a psychiatric unit for a few years,” Schaffer said, “I still didn’t really understand that what my daughter was living with was a brain disease.” Listening to and learning from the experiences of others helped Schaffer expand her understanding of her daughter’s struggle — and moved her to speak up about her own family’s experiences.
“I was struck by how much courage the other people in the class had,” she said. “I realized how much hearing their individual stories was helping me. I was inspired.”
Because she had conducted several qualitative research studies in her role as a nursing professor, Schaffer began to think that the inspiring stories she was hearing might be the seed of a larger project.
“I thought,” she recalled, “‘Why not do a qualitative study on family-member experiences with a loved one with mental illness?’”
Schaffer developed a research proposal, got it approved by Bethel and secured funding from her nursing honors society. She then posted a notice in NAMI’s statewide newsletter asking for individuals interested in sharing their experiences caring for a loved one with bipolar disorder to participate in her research.
In the end, Schaffer met with and interviewed 20 study participants — five parents, five partners, five siblings and five adult children of people with mental illness. Just as she’d felt when she took the Family-to-Family class, Schaffer said she was humbled by the people who volunteered to tell their stories.
“I am so grateful to them,” she said. “They took time to talk to me because they want others to know what their experience has been like. They want to help others in the same situation.”
Shaffer’s original goal was to use her interviews as the basis of a book that could provide support and guidance for families. She’d recently retired from Bethel, and thought that it could be a good retirement project. And her new comfort with advocacy and open communication helped her decide that her own family’s story would play a central role in the book.
“I wanted to use my story to help other families the way that other people’s stories had helped me,” she said.
Schaffer eventually finished a draft of her book, which she tentatively titled, “When a Relative Lives With a Mental Illness: Stories of Hope and Acceptance.” When she couldn’t secure an agent or a publisher, she decided to put the project on hold. But her desire to make the the stories she’d collected available to the public kept gnawing at her.
“I thought, ‘How do I get those stories out?’” Schaffer said. “I just couldn’t set it aside.”
So she created “Family Bipolar Stories,” a comprehensive website that presents her collected research in an accessible, easy-to-access format. The intended audience is any person who is seeking information, support and reassurance in their journey caring for a loved one with mental illness.
While the site’s focus is bipolar disorder, Schaffer believes that the stories and resources can be applicable for people with a range of mental illnesses. While the stories she included mostly come from families of people with bipolar disorder the hopeful, helpful, stories can apply in other situations, too.
Juanita Jensen’s oldest son is 25 years old. He had his first psychotic break when he was 19.
“Like most people who go into the hospital or psychiatric ward for their first episode, he was released with a general diagnosis of schizoaffective disorder,” Jensen said of her son. But research she’s conducted since — combined with the insight of physicians — has led her to conclude that bipolar with schizoaffective disorder would be a more accurate diagnosis.
Jensen said that Schaffer’s website provides useful information and key insights that she wished she would have had access to when her son was discharged after his first hospitalization.
If a child is hospitalized with a physical ailment, Jensen said, parents are usually supplied with information about the diagnosis and advice on how to seek treatment. But discharge protocols for a mental health diagnosis are often vague.
“When a child is diagnosed with a mental health issue with a vague diagnosis there are no directions for support,” Jensen said. Unlike a physical ailment, she added, when your child is diagnosed with a mental illness, “You can’t wrap your arms around them and make it better. It leaves parents and anyone else who is taking care of a loved one with so few answers and really no hope. You feel like, ‘What am I going to do now? What does this mean?’”
That’s why “Family Bipolar Stories” is so helpful, Jensen said.
“I love the links that provide more information. These are real stories, real means of support and real links to access information on things like, ‘What is civil commitment?’ The site really clarifies and answers questions.”
“Family Bipolar Stories” could also be a resource for people who want to learn more about mental illness and its impact on families, Webster said. The site is approachable and helpful for all users, not just people curious about bipolar disorder.
“Someone may go to Marge’s website and think, ‘Bipolar — that is not going to apply to me,’” Webster said. “That could be a deterrence for some people. But if they take the time to explore they will discover, ‘I feel this, too. I can connect with that.’ There are some wonderful resources here that everyone can reach out to.”
Sue Abderholden, executive director of NAMI-Minnesota, understands the power that personal histories can hold in the recovery process.
“Sharing your story and hearing other people’s stories is an important way to not feel alone in the journey of supporting a family member with mental illness,” she said, explaining that NAMI’s “In Our Own Voice” presentation series, where trained public speakers tell audiences about their own stories of living with mental illness and achieving recovery, is an example of the power of storytelling: “This is a way that ‘Family Bipolar Stories’ provides support and hope for families living with mental illness.”
A long and winding road
In the years since their first hospitalizations, the two Sarahs have worked hard to achieve independent lives. Webster’s daughter is married and lives in another state, sharing a home with her husband and his parents. Diagnosed with schizophrenia at age 33, it took time for Sarah to find the right combination of medicines to treat her mental illness, but she eventually discovered a treatment plan that helps her live a happy and stable life.
“She’s able to function by taking care of the household things,” Webster said. “She’s got some structure and meaning in her life. She has a supportive husband. He and her in laws have been her primary line of support. She’s very fortunate.”
Shaffer’s daughter Sarah, now 47, has been living with her parents since the beginning of the pandemic. She plans to move back to her apartment when it is safe. Her first psychotic break occurred when she was 22, one year out of college and working at her first adult job.
“She was at work in Uptown and she walked out in the middle of the street,” Schaffer recalled. “Her supervisor called the police. They sent her to the hospital. I got a call that she was at the hospital.”
That was the first of many hospitalizations, Schaffer said. Her daughter would disappear for weeks or months at a time, and then suddenly reappear in her parents’ life, like the time she showed up for Thanksgiving with a new boyfriend. Schaffer soon learned that Sarah was pregnant.
Though her relationship with her son’s father didn’t last, pregnancy and breastfeeding kept Sarah’s symptoms at bay.
“She had two good years without any hospitalizations,” Schaffer said. But Sarah’s cycles of mania and depression eventually returned.
“She was often brought to the hospital by the police because she’d be in a vulnerable situation,” Schaffer said. “One time she ended up with frostbite on her feet because her shoes fell off and she just kept walking and walking.”
When Schaffer’s grandson was 4 years old, he and Sarah moved in with Schaffer and her husband. When her grandson was nearing kindergarten, Sarah announced she wanted to leave. Schaffer put her foot down.
“I said, ‘You can’t take him with you,’” she recalled. Sarah moved out, but her son stayed: “We’ve had him full time since kindergarten. He’s now 14.”
For many years after her son’s birth, Sarah had what felt like to her mother an unending series of hospitalizations. Eventually a social worker helped sign her up with an Assertive Community Treatment (ACT) team, where participants are assigned a team (a psychiatrist, nurse and case manager) that helps manage their mental illness.
Sarah’s ACT team, Schaffer said, has helped balance her life. “She’s now committed to taking medications regularly. She’s stayed stable and is doing well. The nurse comes out every two weeks and brings her medications. Since that started, she’s only had one brief hospitalization.”
And Schaffer said that her research and activism has given her own life a new sense of purpose and meaning. She even wrote a poem, titled “Acceptance,” about her family’s journey with mental illness, where one stanza addresses the impact this project has had on her life:
Learning about advocacy
Teaching and supporting others.
Speaking about mental illness. I find my voice.
I write the stories. I do what I can. I am getting through.