Image by Alice Woodrome

I didn't want to be. I am not trained in social work and the internal dynamics of the mental health system are still a mystery to me. I became an unofficial case manager by default. Someone had to coordinate services for my loved one with schizophrenia, and the job fell to me because no one else was doing it.

There was a time when I thought that because my loved one was assigned a "case manager" at the community mental health center, that her case would be "managed." I was naive. It doesn't work that way in the real world. Caseworkers can have more than a hundred clients; so only those in crisis are likely to get attention. People with schizophrenia need a lot of help to function on their own in the community, and the community is where more and more of them are finding themselves as the hospitals and residential care facilities are closed.

That wouldn't be a bad thing if there were adequate support in the community, but there isn't. Mentally ill people are essentially on their own. Sure, there is help available. There are community health centers with psychiatrists who prescribe medications. There are even programs that pay for some medications. Peer groups meet to discuss shared problems, and day programs and activities are offered for those who want to participate. And there are those with the title of "case manager."

Trouble is, psychiatrists rarely have time to see patients more than 5 minutes a month, hardly enough time to monitor the effectiveness of therapy. One-on-one counseling and therapy at the community health centers are a thing of the past. A consumer is lucky if his case manager will make regular appointments. Services are available only if he is well enough to know he needs help, has transportation, and can gather the wit to keep appointments. It is a critically flawed system, and one that doesn't work at all for those most in need of treatment. There is talk of a "program for assertive community treatment" (PACT) that, if funded and implemented, may address these problems in the future, but right now the burden is on the weakest link.

The situation is grim for those with mental illnesses who do not have someone to look out for them. That's why I have been pressed into the role of case manager just as many other family members have. We grope in the dark trying to educate ourselves about a system that is so confusing it confounds the professionals. We become the payees for disability checks when our loved ones need a responsible party to handle their money. When they need desperately to be hospitalized we have to fight to get them admitted. When they are released, it is family who usually must find suitable lodging. We learn about section 8 and public housing and make the phone calls and fill out the forms. We help them apply for food stamps and go with them to interviews.

And there is more. Our mentally ill loved ones usually need help with tasks beyond the scope of a case manager. We are there to clean their apartments when it is more than they can handle and we keep food in their refrigerators. We provide transportation and help them remember to take their medications. We arrange for private doctors and therapists so they can get one-on-one counseling for more than 5 minutes. We provide companionship when our loved ones cannot reach out enough to make friends.

We endure remarks about co-dependence from well-meaning people who think our "hovering" is the reason our loved ones are dependent. At times we are even tempted to believe them, and have stepped back only to see the folly in supposing that "tough love" cures mental illness.

The fact is, most people with schizophrenia do not do well without a great deal of support, both emotionally and with the problems of daily living. The cognitive deficits are real, but genuine progress is possible when there is someone who cares enough to learn ways to support recovery. We can help our loved ones set reachable goals and gently ease them into low-pressure interaction with people who can foster their self-esteem. We can reduce stress levels by keeping conflicts and criticism to a minimum. We can help maintain a stable environment by providing some structure to their lives. And we can be their unofficial case manager by helping them navigate the health care labyrinth to secure needed services.

Many of our family members may never be well enough to marry, hold a paying job, have a family, or see to all of their own personal needs, but the quality of their lives can be improved immeasurably if we are involved. We can help reduce relapses, prevent demoralization and help them realize some of their goals. If we don't, who will?