Marin parents of mentally ill children grapple with chronic pain and grief
Marin Independent Journal (CA)Apr 26, 2015
"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
"I went down to
Kreitzberg was one of more than 50 people who turned out Monday night to hear
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
"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."
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
"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
Burke is also frustrated because on several occasions when her daughter was hospitalized she was sent to facilities in
A lack of institutional support is also a major issue for
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
Applegarth said her son has been jailed more than 100 times for minor offenses in
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
"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."
Isolation
Matthews said it is important for the parents of the mentally ill to seek the support of other people through groups like
"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
"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."
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