September 27, 2023 – George Kaufmann, an 81-year-old retiree from California, has struggled together with his son’s mental illness for nearly 30 years.
His son Patrick, 48, had his first psychotic episode at 19, Kaufmann said. He had previously struggled with depression, suicidal thoughts and drug use, “but at this point things came to a head.”
Like many individuals with serious mental illnesses, Patrick lacked insight into his condition. “Despite his dangerous behavior, he was not aware that he had a problem at all,” said Kaufmann.
Kaufmann and his wife were only capable of help their son by obtaining a court order that sent him to compulsory treatment. Patrick's first experience with the mental health care system was being dragged out of the home in handcuffs.
The difficulties the Kaufmanns have experienced should not an isolated case. New research shows that caring for a loved one with a mental illness is an unlimited burden.
“Needless to say, this did not start his relationship with mental health facilities off on a positive note. What followed was a difficult period of about 8 to 10 years during which he was involuntarily hospitalized several times because he posed a danger to himself and others,” Kaufman said.
During this time, Patrick was assigned to an intensive case management program called ACT (assertive community treatment). The program consists of psychiatrists, nurses, therapists and case managers who work together as a team to offer holistic care.
Although he was in this system, he often refused to take medication unless the court ordered it. But the staff didn't quit and eventually Patrick decided to just accept treatment.
Patrick's care team placed him in a residential program for individuals with dual diagnosis (mental illness and substance abuse). Once he was clean and sober and taking his medications usually, he was capable of begin living independently. He became certified as a peer specialist and worked as an employment counselor for youth with first-episode psychosis with the identical provider he had received help from.
“Strenuous” strain
Kaufmann described the difficulties he and his wife had in coping with an adult child with mental illness. “As parents and family members, we were frustrated. We didn't know what to do,” he said. “We had no experience dealing with mental illness. We kept doing things that didn't work or made the situation worse.”
Ken Duckworth, MD, chief medical officer of the National Alliance on Mental Illness, agrees that caring for an adult child with mental illness is one of the difficult tasks for fogeys. “Parents are confused and scared,” he said.
The burden could be overwhelming, says Barbara S., a New York mother whose 36-year-old daughter has bipolar disorder. Barbara's daughter moved in together with her after a manic episode and hospitalization during which she lost her home, her job and most of her friends.
Barbara, who asked that her name not be used to guard her daughter's privacy, said: “I have enjoyed the freedom that comes with having adult children who have left the nest. Now I am involved in the day-to-day details of my daughter's life as if she were a younger child – like doctor's appointments, safety planning and helping with job searches – while also trying to juggle my own work so we can keep a roof over our heads. It's exhausting.”
A Recent study examines the impact on the mental health and quality of lifetime of members of the family who look after a mentally sick person at home. Researchers in Lebanon studied 600 caregivers who accomplished a questionnaire about their quality of life and well-being.
Compared with caregivers of members of the family without mental illness, caregivers of members of the family with mental illness suffered more incessantly from stress, depression, anxiety, sleep disturbances and work fatigue and had a lower quality of life.
The researchers indicate that their findings are consistent with previous studies which have shown that members of the family with schizophrenia, bipolar disorder and dementia experience more stress, anxiety and depression than members of the family of individuals with other chronic illnesses.
'You should not alone'
One of probably the most common feelings faced by parents of adult children with mental illness is the sensation that nobody understands what they're going through, Duckworth says. They feel lost and don't know who to show to for practical and emotional support.
To address these concerns, Duckworth wrote the book: You should not alone: The NAMI guide to mental health – with advice from experts and the wisdom of real individuals and families. The book covers a big selection of topics related to mental illness, including diagnosis, navigating the healthcare system, insurance issues, co-occurring substance abuse, suicide, and supporting members of the family who think they don't need assistance. In addition to skilled advice from experts, it includes accounts from 130 individuals with mental illness who shared their stories.
Duckworth encourages parents to affix the National Alliance on Mental Illness Family-to-Family Program — an 8-week group led by members of the family of those with mental illness — that gives education on topics reminiscent of effective communication, self-care, compassionate support from members of the family, and finding resources. People can share what they're going through and find emotional support.
Merchant whose story was told within the book You should not alone, went to his first meeting of the group 25 years ago.
“We had no idea that there was a whole community of people out there who had had similar experiences,” he said. “At the meeting, we made statements about our son and our reactions to his illness that we thought people would find strange or off-putting. Instead, people said, 'Yes, we went through the same thing,' and shared how they dealt with it.” Today, Kaufmann is a licensed teacher of family-to-family courses.
No uniform approach
“There is no one-size-fits-all solution,” Duckworth said. Strategies that work for one patient or family may not work for an additional.
One of the most important challenges in coping with mental illness in relatives, for instance, is that they should not aware of their illness. Patrick is an example of this. “He thought he was fine and that we, his parents, were the 'crazy ones,'” said Kaufmann.
This condition, called Anosognosiaaffects as much as 40% of individuals with bipolar disorder and 50% of individuals with schizophrenia (in addition to other disorders) and is the rationale why many patients refuse to take medication or stop taking it after starting treatment.
Parents often need to do whatever works to “find ways to get the person to accept treatment,” Duckworth said.
Barbara's daughter, for instance, stopped taking her medication when she got here home from the hospital because she “didn't like the way the medication worked and thought she didn't need it anymore,” Barbara said.
Barbara “bribed” her daughter to return on medication by promising to make a journey to Europe together with her. “I told her we would travel together when she had been on medication for six months, and I would buy the tickets when she had been on medication for one month.”
Duckworth told the story of a person with schizophrenia whose mother took a special approach. She made taking medication a condition of her son's being allowed to live together with her. The son knew he didn't wish to be homeless, so he agreed.
Let them find their very own way
It is usually crucial to be “hands-on” with an individual with mental illness, offering practical help beyond what is often appropriate for many adults. Duckworth notes that this approach is typically discouraged by the 12-step philosophy of Alcoholics Anonymous and similar groups, which teach that all and sundry is the “agent” of their very own recovery. Parents are seen as “enabling” their child's illness in the event that they offer tangible help after the kid has lost a job or home, for instance, due to their very own behavior and decisions.
However, this approach is just not necessarily applicable to individuals with severe mental illness who may not find a way to take responsibility for his or her behavior.
But attempting to force a toddler into treatment doesn't necessarily work either, says Kaufmann. “We realized that by making acceptance of treatment the focus, we were pushing Patrick away. We weren't giving him the space he needed to make his own decisions, and he felt 'smothered' by us.” Patrick became more open to treatment when his parents stopped pushing for it.
And when he began taking medication, “he told me he didn't like it when we kept asking him if he had remembered to take his medication today,” Kaufmann continued. “We found that the best thing to do was to hold back and let him fight his own battle if necessary. After years of hitting the wall, we needed to try something new, and there was nothing we could do for him that he needed to do himself, no matter how much his disease was affecting him,” he said.
When Patrick decided to return to varsity, Kaufmann was initially hesitant. Patrick was now married, and Kaufmann thought the stress of college combined together with his responsibilities as a husband and father may very well be dangerously overwhelming. But it turned out to be decision. “Even if you see flaws in your child's decision, they may need to try it out for themselves to learn. The more freedom you can give them, the better. But that's the hardest thing you can do as a parent, and it never gets easier.”
Guardians of sunshine and hope
Patients sometimes experience relapses, as happened to Patrick after a few years of stability. For Kaufmann, this was a reminder that mental illness “is lifelong and 'recovery' does not mean 'cure,' although treatment works and recovery is possible.” Fortunately, Patrick's condition has stabilized and he's recovering from his attack.
“Recovery is not a linear process and is more of a journey than a destination,” Kaufmann said.
“The hardest thing for us as parents is to accept that we cannot control the outcome of our children's lives,” Kaufmann said. “We want to keep our children alive, but sometimes our worst fears come true. It's not because the parents did or didn't do anything. It's because of the disease itself.”
He added: “Even though we still have a lot tilt we do may Give them unconditional love – which does not mean always condoning their behavior – and we can try to be keepers of light and keepers of hope.”