While a lot of joking goes on in our community (and our society in general) about mental illness, actually having a serious mental illness is no laughing matter. On the contrary, it is a form of suffering that those of us lucky enough never to experience it cannot begin to imagine…and I’ll bet we would not make scornful jokes about it if we did.
If you are someone who looks after an adult family member with a serious mental illness (SMI), or are close to someone who does, you know how complicated and stressful that, too, can be. It can also feel incredibly lonely, in part because the demands of caregiving can be so consuming. And since an individual with SMI may not able to participate successfully in social situations, family members and other caregivers can find themselves socially isolated by —and with—the limitations created by the illness. Parents may irrationally blame themselves for the illness itself, and/or fear both the judgement and well-meaning advice of others—judgement and advice which unfortunately may be exactly what they receive, and which may just add pressure (“however much you are doing, you should do something more”) and/or shame to the game. As a result, many people are reluctant to talk openly about their situation.
The fact is, family members and others who are responsible for adults with a serious mental illness face intense, persistent, and often insoluble challenges in providing appropriate support for the person with the disorder, and the wear and tear over a lifetime can be substantial.
As with other chronic illnesses, SMI which begins in childhood affects the course of a child’s development in other areas (physical, social, and emotional), resulting in limitations and/or eccentricities in the way they function as adults. The illness can also put severe strain on the family system, since families often become organized around the needs and behaviors of the mentally ill child. These needs and demands may persistently require more of the family’s resources (of time, attention, money and energy), which can leave other children feeling neglected, with effects on the family system that persist over time. In addition, outside childcare can be hard to find, since coping with the behaviors and needs of a mentally-ill child takes more skill, wisdom and patience than the average neighborhood babysitter is likely to have! As a result parents may find themselves with no time away from caregiving to replenish their personal energy and refresh their own relationship. Adult siblings may feel torn between the needs of their own partners and children, and the needs of the sibling that requires ongoing care.
Single parents coping with adult children with SMI have their own unique challenges, especially as they themselves age, since they are often facing both a present with no-one to share the load, and an uncertain future with respect to their own potential care needs.
When it is the parent himself or herself who is the one with SMI, that person’s child may become (by necessity) exceptionally resourceful and “tuned in” to the needs of others, but at the cost of being able to feel safe and at ease in the world, since she may have needed, from early on, to not only make sure her own needs for safety and security were met, but also those of the adults in her family. As an adult, this child may find herself continuing to be responsible for the welfare of a parent who becomes increasingly less able to cope.
For some adults with SMI, the combination of medication and other treatments with family and community supports are stabilizing enough that the person with the illness is able to function independently and well. For others, SMI (which includes, by the way, such conditions as schizophrenia and other psychotic disorders, some more severe forms of bipolar disorder, traumatic brain injury, and dementia disorders) simply does not respond to medication or other kinds of available treatment. And for some, medication calms symptoms but comes with side effects that the person is unwilling to accept.
For these reasons, the circumstance of a severe mental illness in a family member is something that can most often only be managed, not “fixed”. And the list of associated strains is long: one website devoted to the topic listed 28 individual “major stressors” that family caregivers may experience…for a start.
Fortunately, there is help available for family members and other caregivers of adults with SMI. While behavioral counseling can be of use for individuals with severe forms of mental illness, counseling can often be most helpful in assisting family members in meeting their own caregiving and coping challenges, and in understanding that SMI is not their fault!
As with everything, there is a lots of good information available online. The American Psychological Association website (www.apa.org) includes a “Caregiver Briefcase Homepage,” along with other educational information and links to many other support resources.
One of the most important resources to be found there is The National Alliance on Mental Illness (NAMI) which has a chapter in Oregon. By its own description, NAMI is the largest education, support and advocacy organization on mental health in the nation, its mission being “to improve the quality of life of persons with mental illness and their families through support, education and advocacy.” There are currently two NAMI “friends and family” groups active in the Columbia Gorge: one which meets the 1st Thursday of every month from 6-7:30 pm at One Community Health Center (1040 Weber St.) in The Dalles, and one which meets in Hood River on the 4th Saturday of every month from 10-11:30 a.m. at the Hood River Public Library (502 State St). For more information about NAMI Oregon, call the NAMI Oregon support line at 800-343-6264.
And if you are someone you know is interested in starting a “friends and family” NAMI group in South Wasco County (I’ve been thinking about this), email me at firstname.lastname@example.org.
Do you have a topic you’d like to see addressed in this column, or other comments? I’d be glad to hear from you! email me at the address above, or you can leave a voice message at 503-838-6144. For more information about my therapy practice, visit therapist directory webpage or www.donnahendersonlcsw.com
And if you are interested in my new creative arts website, you can find that at www.donnacatehenderson.com