Managing stress that comes with caring for a mentally ill loved one

Stress is often a side effect of caregiving, but those who care for loved ones with mental illness face particularly high rates of burnout, emotional distress and, most significantly, social isolation.

National Stress Awareness Day on Wednesday, Nov. 4, is not focused only on caregivers ― just about everyone experiences stress in today’s world. Still, those who provide daily emotional and financial support for a person with mental illness face uniquely difficult circumstances.

Stigma is so overpowering that people are embarrassed that their child, loved one, spouse or sibling has a mental illness. Afraid of being judged by others or because of the misconceptions and shame associated with mental illness, caregivers often withdraw from social activities and end up bearing the burden alone.

A person with mental illness often experiences unpredictable symptoms requiring frequent changes in treatment, so managing medications is another source of caregiver stress. Your loved one may become noncompliant with medications because of difficult side effects, or just having to take so many of them. As a result, the caregiver has to become ever more vigilant and devise workarounds to ensure compliance.

Then there are the systemic hurdles such as coordinating disability benefits, Medicaid, Social Security, legal rights and crisis intervention services. It’s hard for caregivers to find a psychiatrist; if they do, it’s hard to get an appointment, and frequently even harder to pay for it.

Although people with mental illness are more often victims than perpetrators of crime, their illness can get them into legal trouble with reckless behaviors when they are symptomatic. The police and courts are still not well attuned to the needs of the mentally ill.

Financial burdens also take their toll. Most psychiatrists these days are private pay, not taking insurance at all, let alone Medicaid. When the Social Security Administration denies disability benefits, or the mentally ill individual has to appear in court, legal fees start piling up.

The stress of caregiving takes its toll, but there are ways to lessen its damaging effects.

NAMI (the National Alliance on Mental Illness, nami.org/) offers structured psychoeducation programs to help caregivers better understand their loved one’s diagnosis and achieve long-term well-being. Participants learn what behaviors to expect, and how to manage medications.

NAMI’s Family-to-Family program is an eight-week course for families who are new to caregiving or newly accepting that theirs is a lifelong role. It teaches skills for dealing with the loved one, but also skills for balancing the caregiver’s life, such as arranging a few hours of respite care so you can go to the gym or get a massage.

Probably the most important thing it offers is the knowledge that you’re not alone. Friends with “typical” family members can’t relate to what you’re going through. Programs like NAMI’s help you build a community of people who are in a similar situation. When you’re feeling stress and guilt, you’re listening to someone else who feels the same way.

Peer support is so important, and in-person is better than online. If you can’t find a NAMI program, call your community-based mental health agency and ask about support groups. Building community gives you a social outlet to share experiences and learn tips and strategies for caregiving, such as how to overcome medication noncompliance and set firm boundaries.

Self-care is important, too. Keep up hygiene, eat healthy, exercise and get fresh air. You can’t live on work and worry.

Mental illness is a disease like any other medical condition. There’s no cure, but treatment can let your loved one still live a good life. That gives you hope, and hope is an antidote to stress.

• Bonnie Lane, M.S., is principal consultant with Family Support Services in Northbrook, specializing in supporting families whose loved ones suffer from severe mental illness or substance addiction. Daily Herald readers can contact her at 847-651-1554 or bonnielane@thefamilysupportservices.com.