‘I want her back’: UMaine study examines grief among parents of children with serious mental illness

By Terry Stackhouse

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    BRISTOL, Maine (WMTW) — A new study from researchers at the University of Maine examines grief experienced by parents of children with severe mental illness and violent tendencies.

The research leader Karyn Sporer, associate professor of sociology at UMaine, says the majority of people with serious mental illnesses are not violent.

While people with serious mental illnesses are more likely to be the victim of violent crime than the perpetrators, Sporer says data shows SMI is associated with violence most often directed at family caregivers.

“I refuse to grieve. I don’t like the feeling and I want her back,” said Crystal Bourassa, a mother from Bristol.

Bourassa is fighting to preserve the future she’s envisioned for her 15-year-old daughter.

The teen is involved in the family’s auto racing activities and is described by Bourassa as an active, spirited girl.

She also lives, Bourassa says, with several mental illness.

“I am a 35 year old adult that she put her hands on and had no problem connecting with my jugular,” Bourassa said.

The teen’s diagnoses include ADHD, oppositional defiant disorder, anxiety and depression.

Symptoms manifest in bursts of rage, Bourassa says.

Bourassa sees some parallels between her experience and that of other parents detailed in the recently published study from researchers at UMaine.

“These parents are exhausted,” said Sporer, the research leader.

Sporer says her research shows that as a way of coping, parents reconstructed their child’s identity in one of two ways.

The first is described as “my child is absent” with parents perceiving their child changed into a completely different person or stranger, describing them as “dead” or “gone.”

“There’s also real sadness and mourning and a sense of loss that the child that they raised and the dream and aspirations that they had not just for their children but their family lives has sort of fallen apart,” Sporer said.

Other parents, according to Sporer, separate their child from mental illness and violence.

Bourassa’s daughter has been hospitalized twice for mental health emergencies.

She wants her admitted to a long-term residential mental health care facility.

“The life I saw for my daughter, if she doesn’t get the help she needs, she is not going to have that life,” Bourassa said.

The teen also wants to receive residential care but case managers tell the family there’s a wait list.

Bourassa has not lost sight of the vision she has for her daughter’s future and is racing to get her treatment.

In January, a spokesperson for Maine’s Department of Health and Human Services said the availability of services such as residential mental health care for children is tied to providers’ ability to hire and retain staff amid record low unemployment.

To help, the agency says Gov. Janet Mills’ budget proposal includes $17 million to expand children’s behavioral health services.

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