Helping Adults with Mental Illness A Guide

Helping Adults with Mental Illness A Guide

The Burden of Caring for Loved Ones with Mental Illness: An Emotional Journey


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Caring for a loved one with mental illness is an emotional rollercoaster that many families experience. For George Kaufmann, an 81-year-old retiree from California, this journey has spanned close to three decades. His son, Patrick, developed mental health issues at a young age, culminating in his first psychotic episode at 19. Like many individuals with severe mental illness, Patrick lacked insight into his condition, leaving his parents to grapple with the challenge of securing the help he needed.

A Rocky Road to Recovery

The initial encounter with the mental health system was far from ideal for the Kaufmanns. In order to obtain treatment for their son, they had to resort to obtaining a court order for involuntary treatment, resulting in Patrick being taken away in handcuffs. This tumultuous period lasted for about 8 to 10 years, during which Patrick experienced a series of involuntary hospitalizations due to the threat he posed to himself and others.

Eventually, Patrick was enrolled in an intensive case management program called ACT (assertive community treatment). This holistic program, consisting of psychiatrists, nurses, therapists, and case managers, aimed to provide comprehensive care. Although Patrick initially resisted medication, the dedicated staff persisted in their efforts, leading to his eventual acceptance of treatment.

Patrick’s journey to recovery involved participation in a residential program for individuals with dual diagnosis, combining mental illness and substance abuse. By adhering to medication, achieving sobriety, and actively engaging in therapy, Patrick managed to regain his independence. Additionally, he became a certified peer specialist, using his own experiences to help others navigate the challenges of maintaining mental health.

The Exhausting Burden on Families

George Kaufmann described the struggles he and his wife faced while caring for their adult son with mental illness. Frustration, inexperience, and the limitations of their knowledge all posed significant hurdles. Ken Duckworth, MD, Chief Medical Officer of the National Alliance on Mental Illness, acknowledged that being a caregiver to an adult child with mental illness can be one of the most challenging experiences a parent can face. Confusion and fear often plague caregivers, who find themselves navigating unfamiliar territory.

Barbara S, a mother from New York, shared a similar sentiment. Her 36-year-old daughter’s bipolar disorder led her to move back in with Barbara following a manic episode and subsequent hospitalization, resulting in the loss of her home, employment, and friendships. Barbara found herself juggling the demands of her daughter’s life, including medical appointments, safety planning, and employment assistance, all while maintaining her own work to provide for their basic needs. The toll of this continuous care is undeniably exhausting.

The Impact on Caregivers’ Mental Health

A recent study conducted in Lebanon shed light on the impact of caring for a mentally ill family member at home. The study examined 600 caregivers who completed a questionnaire regarding their quality of life and well-being. Caregivers of family members with mental illness consistently reported higher levels of stress, depression, anxiety, sleep disturbances, and work fatigue, along with a lower quality of life compared to caregivers of individuals without mental illness.

These findings corroborate previous studies showcasing the increased stress, anxiety, and depression experienced by caregivers of individuals with conditions such as schizophrenia, bipolar disorder, and dementia. It is essential to recognize the immense burden placed on caregivers and provide them with the support they need to navigate this challenging role.

You Are Not Alone: Seeking Support and Education

A prevalent feeling among parents of adult children with mental illness is a sense of isolation, as they believe that no one truly understands their struggles. To address this, Dr. Ken Duckworth wrote the book “You Are Not Alone: The NAMI Guide to Navigating Mental Health,” offering both practical advice from experts and heartfelt stories from individuals and families touched by mental illness. The book covers various topics, including diagnoses, navigating the healthcare system, insurance issues, co-occurring substance abuse, suicide, and helping family members who resist seeking help.

Dr. Duckworth encourages parents to attend the National Alliance on Mental Illness Family-to-Family program, an 8-week support group run by family members. This program provides education on effective communication, self-care, compassionate support, and resource navigation. Participants find solace in the shared experiences of others, gaining emotional support in a safe, understanding environment.

Finding Strength in Community

George Kaufmann’s journey led him to his first meeting of the Family-to-Family group 25 years ago. He and his wife discovered an entire community of people who had faced similar experiences. Sharing openly about their struggles with their son’s illness, they were met with understanding and advice from fellow attendees who had encountered similar challenges. Inspired by this newfound support, Kaufmann became a certified teacher of Family-to-Family classes, helping others navigate their own journeys.

Individual Approaches to Care

Dr. Duckworth emphasizes that there is no one-size-fits-all approach when it comes to caring for individuals with mental illness. Each patient and family require a tailored approach, as strategies that work for one may not be effective for another. A significant challenge often encountered is the lack of awareness exhibited by those with mental illness regarding their condition. Anosognosia, a condition affecting up to 50% of individuals with schizophrenia and 40% of individuals with bipolar disorder, leads many to refuse medication. Caregivers must find innovative ways to encourage acceptance of treatment.

Barbara’s daughter stopped taking medication upon returning home from the hospital, as she disliked the side effects and believed she no longer needed it. In an effort to restart her daughter’s medication, Barbara made a unique agreement, promising a trip to Europe after six months of consistent medication use. In a similar case, a mother succeeded in ensuring her son continued his medication by making it a requirement for him to live at home.

The Role of Support and Autonomy

While providing hands-on assistance is often necessary for individuals with severe mental illness, this approach contradicts the “agent” philosophy commonly taught in 12-step programs. These programs emphasize personal accountability, concerning caregivers who fear enabling their loved one’s illness by offering tangible assistance after consequences arise. However, this stance may not be applicable to individuals with severe mental illness who lack the capacity to be fully accountable for their actions.

George Kaufmann discovered that by shifting their focus from treatment acceptance to allowing his son the necessary space to make decisions, his son became more receptive to treatment. Constantly reminding his son to take his medication also proved counterproductive, as it undermined Patrick’s autonomy. It was only when Kaufmann respected his son’s struggles and allowed him to take ownership of his recovery journey that progress was made.

An Everlasting Journey

Recovery from mental illness is not linear, and relapses can occur, as evidenced by Patrick’s experience. George Kaufmann acknowledges that mental illnesses are lifelong, and while recovery is possible, it does not equate to a cure. As parents, he emphasizes the importance of accepting that the outcome of their child’s life is beyond their control. Unconditional love, tempered with appropriate boundaries, creates an environment where hope can thrive. Caregivers often become the keepers of the light, guiding their loved ones through the darkness that mental illness can bring.

In conclusion, caring for a loved one with mental illness is a challenging and emotionally taxing journey. The burden placed on caregivers is immense, affecting their mental health and overall quality of life. However, by seeking support, acquiring education, and recognizing the need for unique approaches to care, families can navigate this difficult path with resilience, love, and hope.