Zac Pogliano
It is with much sadness that I am noting the death of Zac Pogliano, whose mother, Laura, has been a tireless advocate for mental health care and reforms. Mother and son told their stories eloquently to USA TODAY for its wonderful series: Mental Illness: The Cost of Not Caring. In August 2013, Laura wrote a blog post for me entitled: A Police Officer Who Did the Right Thing: Helped My Son When I Couldn’t. According to friends, Zac died during his sleep. No cause has yet been reported.
I have admired Laura for some time and am tremendously sorry for her loss and the loss of her wonderful son as an advocate. Many of their friends have commented about Zac’s death at Treatment Before Tragedy on Facebook. For those of you who didn’t know Laura or Zac, here is the USA TODAY series about them.
USA TODAY: The Fortunate Mother: Caring for a son with schizophrenia
November 16, 2014
DESPITE HARDSHIPS, A MOTHER KNOWS IT COULD BE WORSE
By Rick Hampson
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.
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?”
AS HIS WORLD SHRANK, SO DID MINE’
In 2008 Zac was having what Laura thought were normal teenage problems. He totaled the car. He quit baseball. He broke up with friends. He smoked weed. She called it “the summer from hell.” But it was a season that never ended.
The family — Laura, Zac and his older sister Leah — moved to Maryland from a small town in Illinois in 2004. Laura had gotten a good job as a software trainer. They rented a three-bedroom brick townhouse just north of the Baltimore line.
Zac was popular, athletic, musical, charismatic — “a bit of a ladies’ man,” Leah recalls.
That summer, Laura noticed one of Zac’s eyes was fluttering. His hands trembled. He lost sense of time. He threw fits over nothing, and broke things. He said he saw no point in celebrating his 18th birthday. He hid in the basement, and covered his face against germs.
His doctor sent him to a therapist, who sent him to a psychiatrist, who sent him to a specialist, who diagnosed obsessive-compulsive disorder. Several experts told Laura the problem was behavioral; she should set expectations and not encourage fantasies.
But Zac’s symptoms got worse. He’d sleep 14 hours a day and lie in the shower for an hour under cold water. He was paranoid — hence the knife under the pillow — and when Laura got home from work, the front door always was dead-bolted from the inside.
Once, Zac opened the door but didn’t recognize her. Another time, she had to break a window to get in. When she went back to her car a few minutes later, he locked her out again.
After he decided that the family dog was “contaminating” the household, Zac opened the door and let him escape.
Sometimes he stood stock-still in the middle of a room for several minutes. Sometimes he walked with a stiff, neurologically-impaired gait that Laura thought of as “Frankenwalking.” They were classic symptoms, and the doctor confirmed it: Zac was psychotic.
Laura’s employers, she says, didn’t accept the constant interruptions and sudden departures. A supervisor dismissively called Zac “Laura’s little problem” in front of her team, and privately told her, “No one gives a s—.”
She quit one job, then another and another, to be with Zac, who stayed home from high school more often than he attended.
Her own mental health deteriorated. She had panic attacks, couldn’t sleep. She felt isolated. “I wished he still played rugby, baseball. That he still had his old friends. What he gave up, I gave up. As his world shrank, so did mine.”
But, she says, “I told myself I had to get over what I wanted. My attitude was, ‘I’ll enjoy nothing while he enjoys nothing.”’
She was stunned by the ignorance of mental illness. She was asked how many different personalities Zac had (confusing schizophrenia with multiple personality disorder); if he was a genius (an idiot savant), and, after one of several shooting sprees by a mental patient, “Does he have a gun?”
“My attitude was, ‘I’ll enjoy nothing while he enjoys nothing.’”
Bills piled up — for lawyers (Zac was busted twice for pot and once for heroin), ambulances and co-pays. She had to hire people to sit with Zac when she was working, to drive him to appointments and to do medical and insurance paperwork. “We needed a staff of three to keep a household of two afloat,” she says.
The disease never went away. If Zac stopped taking his meds — because of side effects or because he felt cured — Laura knew a breakdown was coming, just not when. She asked a psychiatrist what triggers a breakdown. Change, he said: “The stress of daily living.”
Out of the ward, down the aisle
A WEDDING AND HOSPITALIZATIONS
In early 2012, Zac stopped taking clozapine, an antipsychotic with many unpleasant side effects. In April, he announced, “I’m crippled,” and slipped into bed in the middle of the day. He complained of pulverized ankles, a brain tumor and a broken back. “I’ll get up when I’m healed,” he told Laura.
He virtually quit eating, because he didn’t trust anyone to bring him uncontaminated food, and drinking, because the water supply was poisoned. He used the toilet only if Laura helped him there.
He smelled. He refused to change clothes. His dehydrated lips were crusty and cracked. “I sat by his bed, putting ice chips in his mouth and wiping his face, begging him, ‘Make a good decision for yourself. See a doctor,'” Laura recalls. But he was 20. She couldn’t make him.
Two weeks later, she slipped out to the courthouse to appear before a judge, who ordered Zac hospitalized for evaluation. Police came and escorted him — shaking, weak, filthy — into a squad car.
But he was not treated for another 13 days. There were two hearings at the hospital, one to determine if Zac was competent to make decisions (no) and the other to determine if he was sick enough to be forcibly treated (yes).
Zac spent three months in the hospital. Laura’s inability during that time to help plan Leah’s wedding epitomized what the mother calls “the sick kid syndrome. He gets all the attention.” (Two years later, on the day Leah went into labor, Laura was rushing Zac to the hospital.)
In July, Zac was released. He was able to put on a suit and walk his sister down the aisle. He seemed fine.
In August he moved with friends into an apartment.
In October he stopped talking olanzapine, a powerful antipsychotic that he said was making it hard to swallow.
In November, claiming he had spiders in his throat and stomach, he was readmitted to the Johns Hopkins schizophrenia unit. It was his 10th hospitalization.
A home of his own
’SCHIZOPHRENIA IS NOT A CASSEROLE ILLNESS’
Laura Pogliano sits at her dining room table, surrounded by her old life — photos of Zac in his baseball uniform, with the dog, with his girlfriend — and her new one — stacks of financial and medical records.
She says she blew through the $220,000 she had in the bank on Zac’s care, and probably another $80,000 in earnings. She lost a house she owned in Illinois to foreclosure. She drives a 12-year-old Mitsubishi with 100,000 miles. She says she’s $150,000 in debt.
Zac comes up from the basement, where he spends most of his time playing video games and listening to music.
He greets his mother’s guest with a polite hand shake. But as he does so he ducks, as if something were falling from the ceiling. His affect is flat. He asks his mother for some money to get cigarettes. She agrees, and reminds him, “Put on your coat!”
“He shouldn’t smoke,” she says, “but he has so few pleasures.”
Laura dotes on Zac — babies him, really, even though she knows he needs to be more independent.
She says that when he’s on his meds — he now gets an injection at a clinic — he’s funny, charming and considerate. When she asked him the other day what he wanted to do, he said, “Just spend some time with you.”
These qualities are not so apparent to others. His sister says the old Zac’s dry sense of humor rarely appears: “Medication takes that light out of people’s eyes.”
Laura has settled into a series of short-commute, limited-term jobs, allowing her to care for Zac. She sees a psychiatrist and takes medication for depression. She says she’s better able to deal with the ups and downs, but she’s lonely. “Who would date this?” she says, alluding to a few extra pounds she’s picked up.
On the table is a folder with contact information for small businesses that might hire the handicapped. But Zac lost his last job at Pizza Hut when he skipped a shift. And, possibly because psychiatrists say he “lacks insight” into his condition, doesn’t want to associate with the mentally ill.
His mother fears for his future. Every time he gets sick, she says, “his brain loses something.”
Her hope is that Zac, like many with schizophrenia, will stabilize as he ages, that maybe after a decade the illness will loosen its grip.
One day her watch will pass to Leah and her husband, Dan, who live in Michigan with their baby daughter. When Dan asked her for Leah’s hand, Laura recalls, “I said yes, on one condition: ‘You have to accept Zac and all the things that come with him. You have to treat him with compassion, always, or I will haunt you!”’
Leah says she feels guilty — why did Zac get sick and not her? — but that if she had to care for him while living hours from an appropriate hospital, “I’d be lost.”
This month, Laura faces another potential crisis: Zac is moving out.
“Who’s going to come to a fundraiser for my son?”
They’ve been quarreling. He’s eager to go; she’s decided it’s time. She found him an apartment three minutes away. A case manager will visit weekly, and a nursing assistant will check in three days and administer medication. Laura will cover the other days.
“He has to get out from under my wing and make friends on his own,” she says, sounding a little dubious.
After six years, she also puzzled by the indifference or hostility to mental illness. She might understand people’s reaction to the mentally ill — mysterious disease, atrocious symptoms — but what about their relatives? Why have autism advocates been able to mobilize public support, and not families of the mentally ill?
This year, for example, Maryland rejected legislation that would have made it easier for families to force mentally ill relatives into treatment.
She thinks it’s this: We see only the upsetting behavior and blame whoever seems in charge.
“Schizophrenia is not a casserole illness,” she says — no one is bringing food to the door. Nor are they staging fundraisers, as they do for cancer patients. “Who’s going to come to a fundraiser for my son?” she asks bitterly. “To them, he’s a problem.”
Of all the costs borne by Laura Pogliano and millions like her, the one of not caring may be the cruelest of all.
A CBS news story about Laura and her family can be viewed here.
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