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Caregiving for someone with serious mental Illness: Secure your own oxygen mask first

Written by Dr. Marc Manseau

As a psychiatrist, I know how challenging it can be to ensure that individuals with serious mental illness get the right mental health and medical care, not to mention have access to basics like housing, food, and income. And as a family member of someone with mental illness, I know firsthand the toll it can take on loved ones and caregivers.

The healthcare system can be bewildering. Navigating health insurance, coordinating between multiple specialists, understanding complex and sometimes conflicting medical advice, and getting timely answers to questions can be dizzying for anyone. Add symptoms of mental illness to this and it is often downright impossible.

Financially affording mental health care adds another layer of stress. Federal law notwithstanding, many private insurance plans have some ways to go before they can say they provide true parity in mental health coverage. Many people with mental illness are unable to work, which puts employment-based private insurance out of their reach. They therefore must depend on public insurance such as Medicaid and/or Medicare.

Some types of intensive mental health services (e.g., Assertive Community Treatment teams) are only paid for by Medicaid. However, paradoxically, the people who need public insurance (and other public benefits, like Social Security Disability Insurance) are often the least capable of successfully completing the onerous application process. So, many individuals with serious mental illness who are lucky enough to have supportive family members and close friends often must turn to them for help.

But helping a loved one with serious mental illness is invariably stressful. First, navigating the healthcare and public benefits systems is complicated, frustrating, and often demoralizing. It can sometimes feel like the entire system is designed to avoid helping the people who need it most. Even as a physician and mental health professional with multiple nurses in my family, I struggled with this when trying to support my own loved one with mental illness.

Second, the symptoms of the mental illness itself can make caregivers anxious, fearful, angry, or depressed. Family members may spend a lot of the time worrying that their loved one may self-harm or be unable to care for themselves. Caregivers may occasionally worry for their own safety during times of crisis. Loved ones may need to take people with serious mental illness into their homes and feel deprived of privacy or quiet space. They may be juggling many other responsibilities alongside caring for an individual with serious mental illness and have no time for self-care or relaxation.

Repeatedly witnessing the suffering that mental illness can cause may drag their mood down over time, leading to emotional distress and hopelessness. The list goes on, and for these reasons, family caregivers tend to have worse mental and physical health, and may be at increased risk for suicide. Especially for those with a high level of strain or stress, caregivers are even more likely to die early.

So, what are caregivers to do? How do we provide the help that our loved ones may so urgently need while maintaining our own mental and physical health? There are no simple answers or easy fixes to this dilemma, but several “best practices” might help. First, do not go it alone. Frequently ask other family members or friends for help or even to take over the primary caregiving responsibility for a while. Consider joining a support group for family members of people with mental illness. The National Alliance on Mental Illness (NAMI) is a wonderful organization; find your local chapter.

Second, hold treatment providers accountable. Their jobs are stressful, and they are operating under serious resource constraints. You can empathize with this, but remember that it is still their job to do whatever they can to help people with mental illness achieve full recovery, and sometimes family members must remind them of this and focus their attention on important problems.

Third, look for expert advice outside of the healthcare system. For instance, consulting an attorney to help sort out issues related to benefits, housing, or guardianship could save enormous time, energy, and frustration. Do not assume you cannot afford it; many communities have non-profit agencies that provide this type of assistance on a sliding scale fee or pro bono basis and it is likely worth a little research.

Fourth, set limits. Realize that recovery from serious mental illness is more like a marathon than a sprint, that setbacks are part of the process, and that you need to reserve your energy if you are to make it to the finish line of the caregiving race. You cannot do it all, you can’t recover for your loved one, and you can’t live their life for them. If you try to do everything for someone and/or be instantly available for them one hundred percent of the time, you will burn out and be less able to help them when truly necessary. Possibly worse, you risk sapping their ability and confidence to care for themselves and (re-)attain independence.

So, take time away from caregiving to rest, meet your own emotional and physical needs, socialize with friends who are not connected to your caregiving role, and enjoy your own life. Your loved one will likely be just fine, and even if they aren’t, it’s not your fault for taking a little time away.

Finally, if you are suffering from symptoms of anxiety or depression, be sure to let your healthcare provider know and seek out your own mental health treatment if necessary. Remember that asking for help is a sign of strength and resilience; a good model for your loved one with mental illness and a lifeline for yourself.

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