In her retirement, Janet works with The Center of Mind-Body Medicine. She teaches the Center’s model of focusing on self-care skills and understanding the role of the nervous system and the stress response. For Janet, this work is a source of strength in her life.
I have all these tools that I use personally. Then when I see people who are mentally ill, I don’t have as much stigma. I feel that life maybe is hard for them because of all these issues and trauma. I see it as a disease. It’s a chronic stress response issue that shows up mentally. I think I’ve come to appreciate the role of the medical model as just one piece within a more integrative mental health model.
Janet has changed her perspective of trying to fix someone who lives with mental illness to accepting that we do not have control over the choices of other adults. When she considered the most challenging aspect of her journey, she talked about seeing her parents’ stress in response to David’s struggle. She realizes that in the early years, she did not know a lot about what was happening with David, because her parents did not want to burden their daughters. Then when Janet realized her mother could no longer handle the stress of responding to David’s symptoms and needs, she moved into an informal guardian role for both her mother and brother. Janet and her sister work as a team in helping their brother.
It was really helpful to have my sister with me—as a team. I can go down and help and move my mom, deal with the medical. Because actually my mom was hospitalized when I was down there, I dealt with that. But I’ve always leaned on my sister. She’s been this great guardian for me. Then she’d lean on me. “What do you think about this?” There are challenges but luckily, I have sister.
Janet reflected that her experience with David has made her humbler.
We’re all just human beings trying to deal with life. Some of us have more challenges than others. I think it’s made me more compassionate and I continue to be more compassionate about myself. I have to be because my mother was a model for bucking up, being the strong one, being the nurse. It’s like there is that role but there’s this other role of letting go and not being in charge and letting things be.
Through her work with The Center of Mind-Body Medicine and another local organization, Janet gained an understanding of the role of self-care tools in responding to the stress and challenges of living with a mental illness or having a loved one living with mental illness. She explained how group support, deep belly breathing, movement, imagery, drawing, and forgiveness meditation are powerful self-care strategies for promoting mental health. She spoke about the benefits of group support and how mental health professionals also need support to keep burnout at bay.
Janet’s responsibilities for David and caring for her son with a disability prompted her work in mind-body medicine and guided her evolving perspective on challenges in the mental health system.
It’s [mental illness] not necessarily something that needs to be fixed as well as be appreciated, managed if needed, and supported. It’s become clearer to me that in working with any chronic disease, including mental health, that the “medicine” is much broader than a pill or hospitalization. It’s about so much more around it, like emotional support; case management; employment; and access to healthy food, physical activity, and housing.
When asked about suggestions for others who support a family member living with mental illness, Janet focused on self-care.
NAMI has good support groups for family members. Read as much as you can about it. Ask for help, for your own self. Be as calm as you can yourself. Don’t instigate distress with the person. Don’t blame. Don’t shame. Get coaching from the mental health crisis hotline. I would also recommend The Center for Mind-Body Medicine as a resource as well as Mindfulness-Based Stress Reduction (MSBR) courses.
Note: NAMI (National Alliance on Mental Illness) is a mental health advocacy organization at national and state levels that offers a multitude of informational material, classes, and support groups.
She balances a commitment to supporting her brother with letting go and self-care. In the past, Janet provided direct care for her son, now age 33. He was born with cerebral palsy and physical disabilities. After caring for him at home for many years, her son now receives care in a group home.
To do care 24/7 of a child with significant physical and emotional needs, and also be a nurse and a woman, it was totally in my face. How are you going to take care of yourself? Because you’re not going to survive.
Her son moved out before Janet needed to step up to responding to her brother’s support needs when her mother became sick. She views her son as extremely “high maintenance” in comparison to her brother who does not ask for much. Today, Janet visits her son in the group home, usually weekly. She is a guardian for her son, who also has cognitive challenges and experiences anxiety and depression. She reiterated how her connection with The Center of Mind-Body Medicine has been a source of strength in providing a foundation of self-care.
Janet proclaims a strong message for both engaging in self-care and letting go of what cannot be changed. She is realistic about outcomes for her brother while at the same time has a steadfast commitment to supporting him through the challenges that he encounters in his struggle to maintain stability while living with bipolar disorder.