For many families, the stress of living with and caring for a mentally ill family member can strain even the strongest relationships. Witnessing a family member struggle with a persistent illness of any kind is painful, and a mental illness can add more stress in the form of guilt, fear, or ignorance from within the family, and stigma or a lack of support from outside it. Studies further reveal that separation and divorce are not uncommon in families coping with mental illness.
The case of Rose Ibarra of Salinas, California, illustrates the typical challenges faced by such families. An extremely open and caring woman, she has a daughter with mental health challenges and was willing to share her family’s experiences in hopes of helping other families with similar burdens. She said the stress of her daughter’s illness was so severe at one point that she and her husband were close to divorcing. She eventually had to quit her job to care for her daughter.
Dealing with stigma in the larger community is another challenge families might face. Rose stated, “At first everybody blamed my daughter for her illness and said she was crazy. The first thing I found was there was not a lot of information about mental health or mental illnesses. There was not a lot of support. There was also a lot of ignorance in my community about what mental health is.” However, when she did locate information and support, it made a positive difference for her family.
Another challenge is the disparity among individual family members’ levels of understanding, as well as their coping mechanisms. Some may be more knowledgeable or perceptive about mental illness than others, which can also cause tension. Considering the often extreme amounts of stress these situations can bring, caregivers themselves can develop their own mental health problems, which can spur anxiety, depression, and mental distress.
Children are not immune to the stress of living with a mentally ill parent or sibling either. They may be fearful of or confused by behavior exhibited by an ill family member, or resent an ill sibling who requires a lot of time and attention from parents.
Trouble with accessing care
According to Rose, receiving care for her daughter was much harder than it should have been in a country with many resources and advanced medical care. She described the early challenges accessing care for her daughter:
“It’s very hard and the system doesn’t do anything. It’s not until the patient is putting their life in danger before they help or give any information. When they give you help is when the patient is putting their life in danger. That’s when they finally give you a referral to go to a psychiatrist and the other help that they give you. They send you to an agency and then to another [office] to do an evaluation. In the ER, they can send you to get help, but they don’t.”
Even when families locate a mental health provider, they may not be able to pay for treatment because of inadequate insurance coverage. The Affordable Care Act increased parity for mental health treatment, but progress on this front is threatened by the current administration, which has proposed amending or canceling some of the provisions of the Act (Johnson 2017). Under one proposed plan, states might be allowed to cancel guaranteed coverage for mental health treatment (Pear and Kaplan 2017).
Caring for an ill child
Caring for an adult child with schizophrenia or bipolar disorder can be especially challenging. While other young adults are leaving home for college or jobs, those with a serious mental illness may need to live at home indefinitely. Parents may fear their child will never be able to function independently, worry about their own futures, and wonder how long they will have the stamina and good health necessary to care for a mentally ill adult child.
Family members may also be haunted by feelings of guilt and remorse. They may ask if they did something wrong as a parent, or missed a sign that he or she was ill. At first, Rose said she and her husband blamed themselves for their daughter’s illness. Parents may disagree about how to deal with their child’s outbursts, erratic behavior, or even threats or violence. One parent may want a child to be institutionalized while the other feels the child can still be cared for at home. There can be many feelings to wade through on a sometimes dark and lonely journey.
Another parent, Jennifer*, has a son who was diagnosed with schizophrenia at age seventeen after having had symptoms since the age of fourteen. Jennifer had to call dozens of providers to find a psychiatrist who could treat her son. She described some of the guilt she experienced. “You ask yourself, ‘If I had been able to get a diagnosis sooner, would he have done better?’ [But] you can’t know what no one told you.”
For families dealing with even younger children, early diagnosis and treatment of mental illness is critical. Treatment at an early age can prevent the cognitive damage that can occur when a mental illness is left untreated. If there is a history of mental illness in the family, it is important that parents watch for signs and symptoms of mental health concerns in their children. They should talk to their teenage children about symptoms of depression, anxiety, and other mental health disorders that run in the family.
Noncompliance with treatment
Dr. Elizabeth Bromley is an Associate Professor of Psychiatry at the Semel Institute for Neuroscience and Human Behavior at UCLA. She has observed how some patients’ noncompliance with treatment can cause major stress in families and can even turn tragic. Some families, she explained, worry about the safety of their loved one, but cannot legally compel their loved one to get treatment. “These are circumstances where family members can be left feeling helpless, angry, confused, and guilty. Yet the reality is that, except in situations of grave and immediate danger, we lack legal and clinical means to coerce treatment.”
As a result, the ill family member’s health may deteriorate, further stressing the family. Noncompliance can include refusal to take prescribed medication or attend therapy. Medication noncompliance is common among people with severe mental illness, especially those with bipolar disorder or schizophrenia. Patients may feel that the side effects of certain medications are worse than the symptoms of the illness and may stop taking their medication altogether.
To further complicate matters, if a mentally ill person’s health suffers further and causes aggressive or erratic behavior, this can cause family members to fear for their own or their loved one’s safety. Adverse symptoms may not occur, but increased mental instability may, and as is sometimes seen, a single family member may bear the brunt of verbal or physical outbursts, which can be a serious cause for concern.
Law enforcement interactions
There have been many highly-publicized, negative incidents between mentally ill citizens and law enforcement. Because of this, advocacy groups support the need for education of police officers about how to approach and defuse situations involving mentally ill people, some of whom may not be currently on their prescribed medication.
According to a published statement from October 2016, the National Council for Behavioral Health praised the International Association of Chiefs of Police’s (IACP) sweeping proposal to systemically improve the way law enforcement officers respond to people with mental illnesses.
During the 2016 IACP conference to launch the “One Mind Campaign,” National Council president and CEO Linda Rosenberg joined IACP leaders, officials from the Bureau of Justice Affairs, and Lt. Michael Woody from CIT International for a call on all police agencies in the United States. The campaign calls for training 100 percent of sworn officers and other support staff in Mental Health First Aid and training at least 20 percent of sworn staff in the Crisis Intervention Team (CIT) response model. Support for the campaign has steadily grown nationwide.
Rose said there have been great improvements in how the police interact with her daughter and other mentally ill individuals:
“Now when we call the police, there is a crisis group that comes with them. Before, there was no information about mental illness. We were afraid of the police because we were afraid that they would think that the person was just trying to be violent or not listen. It’s not like that anymore. Now there is the crisis team that comes out with them, and they can help with the situation. I would like it if police officers in other places had to learn about mental health.”
Family resilience
Despite the many stressors of caring for a mentally ill loved one, many families are resilient and develop myriad coping mechanisms. Some family relationships may strengthen because of the shared experience of, and dedication to, caring for their loved one. Families may participate together in psychoeducation, therapy, or peer support programs.
Strong communication in families is key to enhancing family functioning. Jennifer credits good communication with her son, and with her sister, who is also mentally ill, as helping their family function normally. When communication breaks down in families, the situation can deteriorate. Therapists can help all family members learn how to the keep the lines of communication open.
Help and support for families
The National Alliance on Mental Illness (NAMI), which has local chapters throughout the United States, offers a number of programs and resources for individuals and families. Its Family-to-Family program helps families understand and cope with a loved one’s illness, while its Peer-to-Peer program supports individuals in their recovery. Jennifer says it can be very beneficial for family members and their loved ones to go through NAMI’s 10-week programs at the same time “so everyone is on the same page.”
Jennifer explained that NAMI’s programs can help families develop a more positive mindset about their situation. Hearing from mentally ill individuals and families who are doing well gives families hope. The programs can also help families deal with feelings of guilt and remorse. She stated, “You can’t go back and think [about] what might have been. NAMI helps us to forgive ourselves, reject guilt, and [understand that] it’s genetic.”
Rose said more information is now available for Spanish-speaking families dealing with mental illness. She credits NAMI’s De Familia a Familia program for helping her family understand mental health and mental illness, which medications are available, and how to cope with a loved one’s illness.
Advances in therapeutic approaches
Advances in psychotropic and therapeutic approaches to treating mental illness continue forward. One evidence-based approach to helping families cope with mental illness is psychoeducation. According to the Substance Abuse and Mental Health Services Administration, psychoeducation helps families understand their loved one’s illness and “learn problem-solving, communication, and coping skills.” The first step in the process is participating in a “joining session,” during which the therapist learns about the family’s unique experience with mental illness, their strengths and resources, and their recovery goals. Subsequent meetings may involve the patient and family members, and/or the family may participate in multifamily group therapy, depending on their needs. The maximum duration of psychoeducation is typically nine months.
Innovative, intensive, family-oriented, home-based therapeutic interventions for families caring for a mentally ill child have also been shown to be effective by research studies. One of these approaches is Multisystemic Therapy-Psychiatric (there are MST approaches for other clinical populations also), which provides intensive in-home counseling for children and adolescents suffering from severe mental health and behavioral issues. Involving the young person’s family in therapy is central to the MST approach. The intervention lasts about six months, during which therapists may be in the home daily, as well as on call 24-hours a day.
Families may also benefit from finding a therapist or program that will help them support their loved one in his or her journey through treatment and recovery. To try to improve treatment adherence, Dr. Bromley says clinicians can “work gently and relentlessly over time to improve the affected individual’s comfort and trust with treatment.” She notes, however, that families may have difficulty finding professional support for their efforts to keep their loved one on track with treatment. The key is to continue to search for the right fit for the family, including cultural and spiritual outlets in addition to traditional therapeutic resources.
Dealing with blame, guilt, anger, or fear
Dr. Bromley said professionally trained therapists can help families cope with and normalize feelings of blame, guilt, anger, or fear. She explained that the action of loved ones while they are ill, including destructive or erratic behavior, “can be quite painful for families. It can be difficult for family members to not take personal hurt from such circumstances.” Therapists can help family members understand their loved one’s behaviors or statements and find ways to better communicate with each other.
Jennifer advises family members to live their lives and regain their sense of individuality, which can be lost when caring for a loved one. Rose said NAMI taught her “that in order to take care of other people I have to be able to take care of myself. Now, it’s almost like a daily habit to take time for myself, like talking an hour-long walk or going to an event, or if it is something that is going to help me learn more, then I take it as time for me.”
Jennifer added that when a person has a loved one with mental illness, they must learn to accept that the journey through treatment and recovery is “for the long haul.” She added, “You can’t always expect the worst.” Hope is a powerful thing for families coping with mental illness. Jennifer’s son was in and out of the hospital when he was younger, and they worried about his future.
Now, at age 33, he still lives at home, but he works a steady job. Their family relationships are strong, and Jennifer, a vocal advocate for mental health, finds great reward in being able to help other families in similar situations. She continues to encourage others to reach for the light at the end of the tunnel and to embrace their journey on the road to hope and recovery.
* Partial name used to protect privacy.
