The Light Side of Darkness

Chapter 1

The lucky one

DESPITE HARDSHIPS, A MOTHER KNOWS IT COULD BE WORSE

TOWSON, Md. — She says she's lucky, even though her son's mental illness has driven her to bankruptcy, sidetracked her career and left her clinically depressed.

She's lucky, even though his illness cost her the time to plan her daughter's wedding and the money to pay for it. Even though her only friends now are ones who accept last-minute cancellations of long-made plans. Even though she can't recall the last time she went out on a date.

Lucky, even though her son has been hospitalized 13 times in six years. Even though he's repeatedly called 911 with fantasies – a gunshot wound, a heart attack. Even though he has fantasies (he's rich), hallucinations (he's being followed) and delusions (Mom is a robot). Even though he's slept with a butcher knife under his pillow.

Laura Pogliano calls herself lucky even though Zac, her dear boy, has lived all his young adult life with schizophrenia.

Her gratitude makes sense only when you consider the state of America's system of mental health care.

In a series of stories this year, USA TODAY has detailed the human and financial cost of caring so little about the nearly 10 million Americans who are seriously mentally ill. It's a cost borne disproportionately by patients' families, and it is crushing many of them.

About 40% of the most disabled mentally ill are cared for by relatives — but not forever. "In the end, most of them bail out. They can't take it any longer,'' says Doris Fuller of the Treatment Advocacy Center, which wants to make it easier to legally compel the recalcitrant mentally ill to accept treatment.

Families can force their psychotic members to enter an institution or receive treatment only by proving they're dangerous to themselves or others. Even then, a shortage of facilities ensures that patients often are discharged prematurely. And families face exorbitant out-of-pocket costs for all but the most basic care.

So Laura Pogliano feels lucky that she's been able to hang in, lucky that Zac is not living in jail or under a bridge.

Count her blessings: Zac's illness developed before he was 18, giving her legal control at the outset. He does not refuse his anti-psychotic medication. When he needs to be hospitalized, he usually does not object or exercise his right to deny Laura access to his medical caregivers and information.

For the past two years most of his medical bills have been covered by Medicare disability. He lives minutes from excellent psychiatric care at Johns Hopkins University. He is not homicidal or suicidal.

Despite her relative good fortune, Laura says she can never move forward because her son never stops dying. "Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again.''

Although she mourns the life Zac has lost — sports, pals, girlfriend, college — at 49, she also wonders: "What happened to my life?''