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Marin parents of mentally ill children grapple with chronic pain and grief

Marin Independent Journal (CA) - 4/26/2015

April 25--Kentfield resident Caroline Kreitzberg loves all five of her children, but there has always been a special place in her heart for her son, William.

"He, of all my kids, was my golden boy. The kid had so much going for him," Kreitzberg said.

William was a handsome teenager, a three-sport athlete and a fine student. But soon after her son started college at the University of California at Santa Cruz, in February 2010 Kreitzberg received a call from his roommate -- something was seriously wrong with William.

"I went down to Santa Cruz and picked him up that day, and he was a different person than I had dropped off a month earlier," Kreitzberg said. "He was talking about the things he had become paranoid about and these delusions that he had, and of course he didn't realize they were delusions. He was in that way almost unrecognizable."

Kreitzberg was one of more than 50 people who turned out Monday night to hear Mill Valley psychologist Alexandra Matthews talk about the chronic grief that the parents and relatives of the mentally ill endure. The event was sponsored by the Marin chapter of the National Alliance on Mental Illness, known as NAMI.

Disappointment

Matthews told her audience that one of the biggest sources of the chronic pain and grief is the discrepancy between parents' hopes, dreams and expectations and the reality of their situation.

"It's a repetitive loss," she said.

Kreitzberg's son was subsequently diagnosed with schizoaffective disorder -- a cousin of the more widely known illness called schizophrenia. Nine months after returning from college, William left a suicide note in his room and set out in his mother's car with plans to jump off the Golden Gate Bridge; a flat tire saved his life.

"I'm very glad that I didn't lose my son. He is very precious to me," Kreitzberg said.

Nevertheless, Kreitzberg says in some respects she feels she has lost the William she once knew. "There were things about him that were important to me and were very ingrained in my experience of him that are no more."

Hopes and dreams

Matthews began her talk last week by having the audience close their eyes and recall what their hopes and dreams were when they decided to have children.

"You probably hoped that your child would be healthy, maybe would go to college, would have a job, would get married, have kids of their own, you'd be a grandparent. Most of all, you hoped that your child would be happy and self-sufficient," Matthews said.

"I'm guessing that when you decided to have children none of you thought: 'I hope my child grows up to be psychotic, manic, homeless and a substance abuser.' None of us set out to be parents with these things in mind," Matthews said.

"Having a chronically mentally ill or severely mentally ill child is extremely painful," she said, "and their chronic mental illness means chronic pain for you."

Carol Burke of San Rafael, who has had to cope with two bipolar children, said, "There is no respite from it. It is with you forever."

One of Burke's sons committed suicide when he was in his early 30s, and she has a daughter who is in a care facility in Florida.

"If you met her, she would be as charming as can be, and you would never know there was anything wrong with her," Burke said.

Invisible illness

Matthews said the transparency of mental illness makes it tougher on parents. If a child has cerebral palsy or Down syndrome, their disability is apparent, but if they are bipolar or schizophrenic and aren't displaying any symptoms other people may think their parents are overreacting or indulging them, Matthews said.

Burke said she routinely runs into this problem when trying to get police to initiate Section 5150 of the California penal code, which authorizes a 72-hour hospitalization of people suspected of having a mental disorder that makes them a danger to themselves or others.

Burke is also frustrated because on several occasions when her daughter was hospitalized she was sent to facilities in Sacramento and Fremont due to a lack of beds in Marin County and then released earlier than she should have been. Burke said the last time her daughter was hospitalized against her will at Marin General she was released after only four days even though on that occasion the law allowed the hospital to hold her for 14 days.

A lack of institutional support is also a major issue for Mary Applegarth, whose 31-year-old son, William Goetze, suffers from a schizoaffective disorder and self-medicates with cocaine, methamphetamine and alcohol. Goetze refuses to take medications to moderate his symptoms, and Applegarth said family members have had to banish him from their homes because his behavior is too erratic without medication. She has been evicted from three apartments due to her son.

Applegarth said, "It's so hard when he's on the phone crying, 'I want to be with you. I want to be with you,' and I have to say, 'I'm sorry. You know the reason why you can't.'"

Laura's Law

Applegarth desperately wants Marin County to adopt "Laura's Law," a measure signed into California law in 2002 that gives local judges the authority to order severely mentally ill individuals to undergo outpatient treatment. Laura's Law targets mentally ill individuals who are too ill to recognize they need treatment, and who often end up being jailed, where they receive no treatment.

Applegarth said her son has been jailed more than 100 times for minor offenses in Marin since turning 19.

Matthews said a big problem for parents of the mentally ill is that their sick children typically have no clue that they're ill and can't take what would seem to be the simplest steps to improve their situations.

Applegarth said her son refused medical treatment after suffering a serious fall seven years ago and again more recently after putting his hand through a Fairfax shop window. One of his hands has been crippled as a result of that last incident. He has also lost his front teeth due to a lack of personal hygiene.

"He doesn't think he is ill," Applegarth said. "He feels his family is crazy and he's just fine. He needs Laura's Law to get him the mental health treatment he needs."

Suzanne Tavano, the county's director of Mental Health and Substance Use Services, has said Laura's Law is unneeded in Marin County. Tavano says advocates of Laura's Law tend to overestimate its powers since it contains no civil or criminal sanctions if a patient doesn't want to go along with the treatment program. Proponents, however, point to implementation of a measure similar to Laura's Law in New York, known as Kendra's Law, which resulted in a 103 percent increase in medication adherence by participants.

Isolation

Matthews said it is important for the parents of the mentally ill to seek the support of other people through groups like NAMI. But Applegarth said she feels isolated because her son's problems are so much worse than other sick children of parents she has encountered.

"They're so saddened by what has happened to William that they don't want to hear my story. Nobody asks about him," Applegarth said. "Since nobody asks, it appears as if nobody cares. It's as if he's dead already."

Kreitzberg said because of the stigma of mental illness she only disclosed the details of her son's illness to members of her family and close friends for the first few years, but then after consulting William she decided to come out of the closet. She and William have since run in marathons to raise money for the International Mental Health Research Organization.

"I had a deep need to be able to be open about his illness," she said.

Matthews offered some other suggestions for parents to cope with their pain. First, she said it is important to recognize the things they can change and those they can't. Second, she said they should avoid setting their expectations for their ill family member too high. Third, she recommended that parents reduce their overall stress level by trying to take more minor day-to-day frustrations in stride. And fourth, she suggested looking into mindfulness training.

Burke, however, said she and other parents with mentally ill children lack the free time to contemplate their grief.

"You have to learn to pick yourself up and fight back," Burke said, "because you also have to take care of your husband, your finances and the rest of your family."

Donations to the International Mental Health Research Organization can be made at www.imhro.org/donate or send a check to IMHRO, P.O. Box 680, Rutherford 94573.

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(c)2015 The Marin Independent Journal (Novato, Calif.)

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