Connie: Becoming an Advocate
Connie expressed her sadness over a changed future—"This is not the future that your child imagined for herself. It’s not what you imagined for her. There’s that loss of dreams you don’t even know you have for your kid.”
By pursuing education about mental illness, Connie learned to avoid buying into stigma, how to talk with people about mental illness, and how to understand her experience as a parent. She found support through church and NAMI. She accompanies other parents to a support group when their children have escalating symptoms. At a previous job, Connie helped develop a program that put first responders in place for mental health crises in her work setting.
She has become better at sensitively sharing some of her observations with Naomi. When Naomi acts fidgety or agitated, Connie asks Naomi if she needs a ride to pick up her medication while being careful to respect Naomi’s young adult status. Connie continues to find some of Naomi’s behaviors challenging. When having conversations about body odor, she has learned to be more direct.
Naomi, I need to point out to you that your body odor is really bad and that concerns me for a couple of reasons. One that means you are not in tune to it. It means you’re tuning into something else. I also think its overload on the internet. Every other time your body odor has gotten out of control is when you’re heading into a mania or you’re in mania. I need you to know that. When was the last time you ate? When was the last time you slept?” Naomi said, “You know mom, that’s really mean.” I said, “No, it’s not mean because part of your illness is you don’t see when you’re getting worse. I’m going to point those things out to you because one of your goals is not to be hospitalized. If you want to stay out of the hospital, then we have to look at the signs and when you don’t see the signs, I have asked your other family members to point things out to you. Because part of the illness is the lack of insight.”
These are difficult conversations because Naomi is an adult. Connie worries about Naomi’s loss of friends since her network consists of church members and family members. Her friends are getting married, completing advanced education, having children, and buying houses. Naomi is “kind of running in place” and Connie is concerned about her loneliness.
Although Naomi has been stable over the last few years, Connie is very clear about her expectations.
“I need you to know I love you, and I am very willing to file another order of protection to keep myself safe. Like you trying to burn my house down.” She said, “Mom, I don’t remember any of that.” “But I do. And you stabbing out your sister’s eyes in every photo, including graduation photos and her glamour shots. I will not go through that again. If it’s getting to the point where I feel unsafe about you, I will need to file for another order of protection. I will do it. That is not a threat, sweetheart, that is a promise, because I deserve to be safe in my own home.” She said, “Okay.”
Connie and Dan planned to retire to Hawaii where Connie grew up, but now they are realizing that may not be possible. They are looking into establishing a special needs trust for Naomi. They have made financial sacrifices to help Naomi manage her bipolar illness, including payment of a huge bill for Naomi’s hospitalization in New York. Even with Connie’s insurance, the copay at 20% was $2000 per week for 14 weeks.
Now Naomi has Medicaid, a housing subsidy, and SSI (Supplemental Security Income for persons with a disability), but she has to reapply every year. Connie lives in fear that Naomi may lose these benefits. The four parents have decided that if Naomi lost the housing subsidy, they would all help pay for the apartment.
Connie knows that her husband Dan, now in his 60s, has less patience for dealing with Naomi’s behavior.
I’m always trying to coach him because he gets it in his head and he wants to be there for her. He gets exhausted by her. I get it. It’s horrible. I often feel like the soft creamy middle between the hard cookie of Naomi’s life and the other people in our family. Some days, I will say to other family members, I get it. But I’m the connective tissue. I don’t have what it takes to be a double stuffed cookie. I can be like a regular Oreo cookie in the middle. But I don’t have the energy to be the double stuffed cookie.
Advocating for what her daughter needs is hard work. When Naomi showed up at her house after a cycle of homelessness, hospitalizations, and arrests, Connie did not want to call the police. But it was what she had to do. She cried and did not go to work for a week. The order for protection changed the way their family celebrated holidays. Connie’s pastor offered space in their church for family celebrations. For two years, Connie and her family held every family function in a room at their church. They did Christmas, birthdays, and every holiday at church. It was a lot of work, but they figured it out.
Connie does not hesitate to talk to others about mental illness. She is specifically grateful to NAMI—“NAMI saved us. I think I would have lost my daughter. I would have lost my marriage. I would have lost my other daughter.” Connie describes the initial search for help as “soul-crushing” but is firm in advising other parents to seek help. NAMI gave her a language to talk with other family members and with her daughter about mental illness. Connie learned how to advocate for her daughter with health professionals and the legal system. She learned about the importance of obtaining her daughter’s consent for release of information so she could be more actively involved in decisions about Naomi’s treatment choices.
Having the word advocacy—to advocate for someone. Just knowing that helped. Because I’m not being the bitchy mom. I’m not being the controlling parent. It’s like no, I’m advocating for what’s in the best interest of my child.
Connie never dreamed that she would be parenting her whole life. She reflected, “I’ve figured out that I can be strong. But I don’t want to be strong. I get tired of being strong.” Yet, Connie and Dan have become stronger. They support other parents who experience rough patches with their children who live with mental illness. Connie is forthright and unwavering in her quest to help Naomi find a stable and meaningful life. She proclaims her message about the need for services and support for persons living with mental illness and their families to all who will listen.