by Pamela Field
“What happens when I die,” asked Susan Michelson, Las Cruces parent of a daughter with a brain disorder, and family support group facilitator of the local National Alliance on Mental Illness group.
Michelson and I met last month and, while the atmosphere around us was full of holiday spirit, we were deep in conversation about a scary subject: How do we make sure our children will be cared for in the event of our death?
This topic was spurred by a recent article in the Huffington Post by Susan Inman, titled “Caregivers for People with Schizophrenia are at the Breaking Point,” on Nov. 13.
Inman, originally from Lordsburg, NM, is a prolific writer on mental health issues, and cited a recent study that points to the stress and profound worries that plague caregivers, primarily parents, of people with brain disorders. The study was conducted by a European-based association of organizations that support families coping with severe brain disorders.
The study, in Inman’s article, referred to family caregivers as the “hidden workforce,” with an average age of 61. Many surveyed are the sole providers of care and said they see fulfilling that role for the rest of their life.
“They (the general public) can’t understand it unless faced with the situation themselves,” said Michelson about the experiences of parents who work with a fragmented mental health system and are often placed in a case manager position to make sure their loved one is safe. Taking this role means knowing that appointments are kept, medications ordered, often providing transportation and a variety of other tasks.
Personally, I relate to this, and remember long ago when I read a psychiatrist’s note for my son that said, “working to the point of sheer exhaustion” when describing my role. Reading this made me sad, but, more than that, it made me angry.
Another aspect of the study cited in Inman’s article revealed deep disconnect with the mental health system, saying that caregivers were not able to influence important decisions in treatment and care planning.
This prompted Inman to ask, “Why doesn’t the mental health system cooperate with these caregivers of those with severe brain disorders, when it is able to work cooperatively with families of people with other disorders?” Several barriers to mental health staff collaborating with families include unwarranted blaming of parents. I can attest that this type of thinking has returned (or maybe it never left) and is still disheartening to me as a psychiatric nurse and parent.
I have always believed that blaming the parents is “taking the easy way out.” So much of the training for mental health clinicians does not include working with families, and a concerted effort needs to be made on the part of the mental health provider to help break down this barrier. Providing mental health clinicians with science-based training regarding psychotic disorders is also necessary.
Michelson facilitates a support group that is geared toward providing families with new coping skills and being able to share with other families in a group setting. She is very committed to being available and wants family members and other care givers in Dona Ana County to feel welcome. The group meets at 6:30 p.m. every second and fourth Wednesday at Peace Lutheran Church, 1701 Missouri. For information, call 575-386-6890 ~: or 575-649-6766.
Pamela Field bas been a psychiatric nurse for more than 20 years and is an active mental health advocate. She is interested in community input on metal health issues and may reached at
575-312-2288 and firstname.lastname@example.org.