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“Families can serve as valuable contributors after an initial history is taken,” states Patti Sacher, a NAMI Family-to-Family course facilitator and the mother of an adult consumer who has been hospitalized eight times since 1989. “Families must be attentive and aware of the fact that during the hospitalization of a loved one, an exact diagnosis is often difficult, and effective medications can take time to find, often change, and can have strong side effects,” she explains. Families need to know that some people with serious mental illness are unable to accept their illness, which is actually a symptom of the illness itself. “No one with lack of insight suddenly gains insight during a three, six or even eight week hospitalization,” explains Sacher. Many times, this ‘lack of insight’ will lead to non-adherence to treatment, which many families find extremely challenging. “Once families do gain better understanding, hospitalizations can provide vital stabilization and an opportunity to begin the process of recovery, but it takes time,” she says.
The element of time plays an important role during the recovery process for families. It is not uncommon when loved ones are first diagnosed that family members believe that once they are given the medication they will be OK and be able to continue on with their daily lives. Often families need to rethink expectations of a quick recovery and understand that there may be permanent changes in some treasured aspects of personality and motivation, but that does not mean that recovery is not possible. Families need to be patient. With effective outpatient treatment, therapy, time, and, of course, knowledge, families will see their loved ones begin to heal.
Families can learn to integrate their loved ones’ mental illness into their lives without having it take over, and siblings can play an important role. “The sibling relationship is unique because it’s the longest relationship a patient will have. It’s comforting for people with mental illness to know that someone else is going to be involved in their care when their parents are no longer around,” states Leventhal. While some siblings choose not to be involved at all, many families have found ways to assign roles to each member of the family so that one person does not take the entire burden.
While siblings play an important role, the parents of multiple children must recognize that different treatment is needed for those with mental illness and those without.
“As a parent, you work within your family to accommodate the needs of your child, which is very difficult if you have other children. It took me five years of living with my daughter to realize that I couldn’t parent her the same way that I did with my older daughter,” explains Karen Jacoby, NAMI Basics facilitator and mother of a child with bipolar I disorder.
The Bottom Line
There is strong evidence that shows family participation in the care of individuals with mental illness contributes to improved outcomes for both the individual and their family. Unfortunately, family participation does not occur in the majority of cases of adults with mental illness. When mental illness strikes a family, the absence of knowledge drives unreasonable expectations regarding recovery and acclimation. This undermines the sufferers’ very fragile sense of self and hinders the treatment process. Effective engagement will only come once families educate themselves and learn ways to meaningfully integrate the illness into their everyday lives.