Seeing the person, not the illness.
Most Alzheimer's patients are taken care of in nursing homes, while people with schizophrenia are shunted away to mental institutions, or so the popular image suggests. The reality is starkly different, with about 80 to 90 percent of Alzheimer's patients taken care of in the home by a spouse or adult child, while about 70 percent of schizophrenics either live with their parents or are closely monitored by them. The same holds true for other serious mental illnesses.
The burden can be enormous on a parent, spouse or child who is suddenly thrust into the role of nurse, housekeeper and friend to someone who is mentally ill. Not surprisingly, studies over the years have consistently shown severe depression in caregivers. Part of this depression stems from having to adjust to a "new" person, one who may be moody, belligerent, depressed and even violent.
There are two types of stresses placed on family caregivers. The physical aspects, including dressing, bathing, toileting, cleaning the house and making meals, are certainly taxing. But research on the stress of giving care to ill family members has shown that it's the emotional aspects that can be the most draining. The emotional component varies by disease, and the individual sufferer and the sufferer's caregiver. Take, for example, Alzheimer's and schizophrenia. Both are illnesses that result in seriously impaired thought processes. Although persons with schizophrenia can function independently and even live independently, research by Linda Rose, R.N., Ph.D., assistant professor in the Johns Hopkins University School of Nursing, shows the illness places unique burdens on families, for several reasons.
"First, schizophrenia often strikes for the first time in the teens and 20s, before a person has had a chance to really prove himself or herself in life, as opposed to Alzheimer's," explains Rose. "And the course of the illness is more uncertain. It may well clear up over the years, or it might last a lifetime. With schizophrenia, there is a tremendous feeling of loss."
Second, she continues, there's also the stigma of schizophrenia. The public to some degree still fears people with schizophrenia and is largely unaware that in reality people with schizophrenia do not engage in violent behavior at a rate any higher than that for their "sane" counterparts.
As a result of misunderstanding and stigma, people don't discuss a family member's schizophrenia or other serious mental illnesses, resulting in a greater sense of social isolation for the caregiver. While Alzheimer's disease is a covered medical condition, schizophrenia is subject to restrictive annual and lifetime limitations on how much insurance companies will pay for medications, psychiatric visits and hospitalizations. These limitations result in severe financial strain for the family.
"Despite the many stresses schizophrenia imposes," says Rose, "caregivers can be a surprisingly resilient lot, as I've discovered through extensive interviews. The caregivers I've studied are searching for ways to regain control over the sometimes chaotic environment in dealing with a mentally disturbed relative."
According to Rose, family members typically have a strong need to maintain contact with the person they perceive as the "real" person hidden behind the symptoms. Although they do not deny the reality of the mental illness, they consistently seek and find glimmers of the person they used to know. Of course, this can be challenging during acute psychotic phases, when the person is almost completely unreachable. But caregivers tend to cope with these frightening episodes by telling themselves and others such things as "he's not the same person," or "when she gets sick, she's not there." In other words, it's important for caregivers to view their schizophrenic relative as a person, not as a person erased by an illness.
"Caregivers also search for ways to maintain their own sense of personal identity," Rose says. "They do this by attempting to use their own unique knowledge of the patient and the patient's nuances to influence the course of care and treatment. As one father told me, 'Because we are with them all the time, we have learned what is practical, pragmatic.'"
Perhaps most critical to sustaining their role as caregiver is having some sense of a future. This often takes the form of setting goals for their ill relative, which might include steps toward getting him or her into an independent living situation. And with newer and more effective medications becoming available, caregivers are realistically looking ahead to a day when the person might actually be symptom-free.
The upshot of Rose's findings,
she says, is that medical professionals and other family members need to
understand and acknowledge how important these coping tactics are for the
caregivers' own mental health. They deserve support; they're the people who have
been there and will continue to be there for the mentally ill patient for years