Sept. 27, 2023 — George Kaufmann, an 81-year-old retiree from California, has been dealing with his son’s mental illness for close to 30 years.
His son, Patrick, 48, had his first psychotic episode at 19, Kaufmann said. He’d previously dealt with depression, suicidal ideation and drug use, ““but things came to a head at that point.”
Like many people with severe mental illness, Patrick lacked insight into his condition. “Despite his dangerous behaviors, he didn’t realize he had any type of problem,” Kaufmann said.
The only way Kaufmann and his wife were able to get help for their son was by getting a court order to have him treated involuntarily. Patrick’s first experience with the mental health system was being dragged out of the house in handcuffs.
The difficulties the Kaufmanns’ have experienced is not unique. New research is showing that caring for a loved one with a mental illness exacts a tremendous toll.
“Needless to say, this didn’t get his relationship with mental health providers off to a good start. What followed was a rocky period of about 8 to 10 years, where he had a series of involuntary hospitalizations because he was a threat to himself and others.” Kaufman said.
During that time, Patrick was assigned to an intensive case management program called ACT (assertive community treatment). The program consists of psychiatrists, nurses, therapist, and case managers, who work as a team to provide holistic care.
Although he attended the program, he usually refused to take medication unless the court ordered it. But the staff didn’t give up and eventually, Patrick decided to accept treatment.
Patrick’s care team got him into a residential program for people with dual diagnosis (mental illness and substance abuse). After becoming clean, sober, and regularly taking his medications, he was able to start living independently. He got certified as a peer specialist, working as an employment counselor for youth with first-episode psychosis at the same provider where he’d received services.
‘Exhausting’ Burden
Kaufmann described difficulties he and his wife faced dealing with an adult child with mental illness. “As parents and family members, we got frustrated. We didn’t know what to do,” he said. “We didn’t have experience dealing with mental illness. We repeatedly did stuff that didn’t work or made things worse.”
Ken Duckworth, MD, chief medical officer of the National Alliance on Mental Illness, agrees that being a caregiver to an adult child with mental illness is one of the most difficult things a parent can face. “Parents are confused and afraid,” he said.
The burden can be overwhelming, says Barbara S, a mother from New York whose 36-year-old daughter has bipolar disorder. Barbara’s daughter moved in with her after a manic episode and hospitalization, during which she lost her home, her employment, and most of her friends.
Barbara, who asked that her name not be used to protect her daughter’s privacy, said, “I was enjoying the freedom that comes with having grown-up kids who left the nest. Now, I’m involved with day-to-day details of my daughter’s life, as if she were a younger child—like medical appointments, safety planning, and helping her find work—while trying to juggle my own work so I can keep a roof over our heads. It’s exhausting.”
A recent study evaluates the impact on the mental health and quality of life of family members who care for a mentally ill person at home. Researchers in Lebanon studied 600 caregivers who completed a questionnaire about their quality of life and wellbeing.
Caregivers of family members with mental illness had higher levels of stress, depression, anxiety, sleep disturbances, and work fatigue as well as lower quality of life, compared to caregivers of family members without mental illness.
The researchers note that their findings align with those of previous studies suggesting that caregivers of family members with schizophrenia, bipolar disorder, and dementia experience more stresses, anxiety, and depression, compared to caregivers of people with other chronic illnesses.
‘You Are Not Alone’
One of the most common feelings that parents of adult children with mental illness face is the sense that no one understands what they’re going through, Duckworth said. They feel lost, not knowing where to turn for practical and emotional support.
To address these concerns, Duckworth wrote the book, You Are Not Alone: The NAMI Guide to Navigating Mental Health—With Advice from Experts and Wisdom from Real Individuals and Families. The book encompasses a spectrum of mental illness-related topics, including diagnoses, navigating the health care system, insurance questions, co-occurring substance abuse, suicide, and helping family members who don’t believe they need help. Beyond professional advice from experts, it contains first-person accounts of 130 people with mental illness who shared their stories.
Duckworth encourages parents to attend the National Alliance on Mental Illness Family-to-Family program — an 8-week group run by family members of people with mental illness — which offers education about topics such as effective communication, self-care, compassionate support of one’s family member, and locating resources. People can share what they’re going through and find emotional support.
Kaufmann, whose story was told in the book You Are Not Alone, went to his first meeting of the group 25 years ago.
“We had no idea there’s a whole community of people out there who’ve had similar experiences,” he said. “In the meeting, we made statements we thought people would regard as strange or off-putting about our son and our reactions to his illness. Instead, people said, ‘Yeah, we went through the same thing’ and shared how they dealt with it.” Now, Kaufmann is a certified teacher of Family-to-Family classes.
No One-Size-Fits-All Approach
“There’s no one-size-fits-all,” Duckworth said. Strategies that work for one patient or family may not work for another.
For example, one of the most challenging aspects of dealing with mental illness in loved ones is lack of awareness on their part that they’re ill. Patrick is an example. “He thought he was fine and we, his parents, were the ‘crazy’ ones,” Kaufmann said.
This condition, called anosognosia, affects as many as 40% of people with bipolar disorder and 50% of people with schizophrenia (as well as other conditions) and is responsible for many patients refusing to take medication or discontinuing once they’ve started.
Parents often need to use whatever works to “find ways to get the person to accept treatment,” Duckworth said.
For example, Barbara’s daughter stopped taking medication when she got home from the hospital because she “didn’t like how the meds made her feel and she thought she didn’t need them anymore,” Barbara said.
Barbara “bribed” her daughter to resume medication by promising to take her on a trip to Europe. “I told her we’d travel together when she’d been on medication for 6 months and I’d buy the tickets when she’d been on medication for 1 month.”
Duckworth shared the story of a man with schizophrenia whose mother had a different approach. She made taking medication a condition for her son to live in her home. The son had enough awareness to know that he didn’t want to be homeless, so he agreed.
Letting Them Find Their Own Way
It’s often necessary to be “hands-on” with a person with mental illness and offer practical assistance beyond what’s usually appropriate for most adults. Duckworth notes that this approach is sometimes discouraged by the 12-step philosophy of Alcoholics Anonymous and similar groups, which teach that a person is the “agent” of their own recovery. Parents are thought to be “enabling” their child’s illness if they provide concrete assistance after the child has lost a job or home, for example, due to his/her own behavior and choices.
But that approach isn’t necessarily applicable to individuals with severe mental illness, who might not have the capability to be accountable for their behavior.
But trying to force a child into recovery won’t necessarily work either, Kaufmann said. “We realized that by making treatment acceptance the focus, we were pushing Patrick away. We weren’t giving him the space he needed to make his own decisions and he felt ‘stifled’ by us.” Patrick became more open to treatment when his parents stopped pushing for it.
And once he started taking medication, “he let me know he didn’t like it when we harped on whether he had remembered to take his meds today,” Kaufmann continued. “We found that the best thing to do was to back off let him have his own struggle if necessary. After years of banging our heads against the wall, we needed to try something new, and we couldn’t do something for him that he needed to do for himself, no matter how impaired he was by his illness,” he said.
When Patrick decided to return to college, Kaufmann initially had reservations. By this time, Patrick was married, and Kaufmann thought the stress of school, together with his responsibilities as a spouse and father, could be dangerously overwhelming. But it turned out to be a good decision. “Even if you see flaws in your child’s decision, they may need to try it out for themselves in order to learn. The more space you can give them, the better. But that’s the hardest thing you can do as a parent, and it never gets easier.”
Keepers of Light and Hope
Patients sometimes have relapses, which happened to Patrick after many years of stability. This was a reminder to Kaufmann that mental illnesses are “lifelong, and ‘recovery’ doesn’t mean ‘cure,’ although treatment does work, and recovery is possible.” Fortunately, Patrick has stabilized and is recovering from his episode.
“Recovery isn’t linear, and it’s a journey rather than a destination,” Kaufmann said.
“The hardest thing for us to accept as parents is that we can’t control the outcome of our child’s life,” Kaufmann said. “We want to keep our kids alive, but our worst fears sometimes happen. That’s not because of something parents did or didn’t do. It’s because of the illness itself.”
He added, “Even though there’s much we can’t do, we can give unconditional love—which doesn’t mean approval of their behavior all the time—and we can try to be the keeper of the light and the keeper of hope.”