Caring for the Caregiver

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Caring for someone with any chronic disease—including a serious mental illness (SMI)—can take an emotional and even physical toll on caretakers. And many times, that investment can lead caregivers to lose sight of their own needs in the service of another’s care.

As a clinician and a former caregiver myself, I know family members can be intrinsic and critical parts of a loved one’s diagnosis and treatment journey. Also, support and coping strategies are needed if everyone is to effectively emerge throughout the process.

My experiences as a family caregiver were not easy. When I was 26, my brother was diagnosed with schizophrenia. As a Taiwanese-American family with deeply rooted cultural expectations and stigma around serious mental illness, my brother’s diagnosis was hard for my family to accept and handle. While I wasn’t my brother’s direct caregiver, I saw the struggle my parents faced from the lack of community support and preexisting knowledge of mental illness. Years later, in 2018, when my father was diagnosed with pancreatic cancer, I stepped in as one of his primary family caregivers and quickly became immersed in navigating a complicated medical system while maintaining my own personal and professional responsibilities.

My family caregiver experiences revealed two fundamental realities: First, I found out that “how-to” guides on being a caregiver are nonexistent. I wished I had received guidance from someone going through the same experience as me. Second, although my brother’s and father’s diagnoses were very different, the caregiver journeys for each were not. Now, as a licensed psychiatrist, I’m able to draw from these experiences to share advice with those whose loved ones have been diagnosed with psychiatric conditions.

The caregiver journey is often difficult, and the impact on the caregivers themselves should be validated. The majority of bipolar disorder and schizophrenia caregivers are unpaid family members¹ who serve as key members of a loved one’s support system. Data from The Harris Poll of caregivers for a family member diagnosed with schizophrenia revealed the top ways they are involved in the care of their loved one: providing emotional support (89 percent), ordering or picking up medications (81 percent), taking their loved one to appointments to receive injections/medication (80 percent), and helping with finances or money management (76 percent). These everyday responsibilities can lead to ongoing stress or even burnout, diminished energy levels, shaky partner intimacy, unstable finances, decrease in overall mood, poor mental and physical health, and loss of self-confidence.²

Here are some tips health care providers (HCPs) can consider in order to help prepare and support family caregivers of those with serious mental illness:

Get educated from the start.

Taking early action to learn about a loved one’s diagnosis can better equip caregivers along their journey. Resources such as mental health advocacy groups, books, and the experiences of others can all help with learning how to provide the best possible care for a loved one with SMI.

Tapping into these trusted educational resources also allows caregivers to be more involved throughout their loved one’s treatment journey. Caregivers can feel more confident and even collaborate more effectively with their loved ones and health care providers on treatment decisions when they’re knowledgeable about the disease and treatment options. But at the end of the day, it is important to keep communication open with a loved one to help figure out the right approach for everyone.

Seek professional opinions.

There is a lot of conflicting advice from external sources and “experts” who may make caregivers feel overwhelmed and confused about how to best help their loved one. Information overload can even lead to added stress and impact caregivers’ confidence in how they’re caring for a loved one.

What I’ve learned from my own caregiving experiences is that there is a lack of consistent and credible advice available to families and caregivers that encompasses the entirety of a loved one’s treatment journey. To address this unmet need, and based on my own experiences as a caregiver and trained psychiatrist, I recently started to conduct family guidance sessions to help families navigate SMIs. I offer an unbiased opinion to help guide family caregivers in their decision-making while also offering a sense of comfort and validation in the direction they choose to take when it comes to a loved one with SMI.

It’s common for caretakers to be feel lost or unaware of the treatment options they have. I encourage other professionals to offer these types of services specifically targeted to caregivers and/or encourage caregivers to seek these types of credible services.

Monitor one’s own mental health.

While it may be the responsibility of a caregiver to provide care and support for a loved one, it’s also their responsibility to first take care of themselves and seek help when needed. Here are some suggestions from The National Alliance on Mental Health (NAMI) for how caregivers can do this:

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1. Pay attention to how you react to stress: Stress affects your holistic health. One way to track stress is to write down what events or situations cause you to feel stressed. Once you know which situations cause you stress, you’ll be better prepared to cope with it when it happens.
2. Maintain your physical health through exercise, eating well, and getting enough sleep: Improved physical health correlates with improved mental health. I understand many caregivers may not have time to dedicate to their physical health, but I suggest starting with small actions, like getting more steps in throughout the day, going to bed an hour earlier, or substituting a certain food in your diet.
3. Gather strength from others and get the support you need: Lack of support may lead caregivers to feel isolated and impact their own mental state. Creating a support system is considered a factor in reducing psychological distress when faced with stressful events.³ Simply setting aside time to vent with people in your social circle or connecting on topics other than your loved one’s mental illness can aid in your overall mental well-being. If you don’t have a support system you feel comfortable speaking to about your mental health, there are free online support groups you can join.

Key takeaways

In some ways, my role as a caregiver was a lot tougher than my role as a clinician. The emotional toll of seeing a loved one suffer makes caregiving extremely tough. The utter helplessness I felt when trying to blindly navigate the treatment landscape while also taking over the many tasks that my father and brother were once very capable of was difficult and often lonely.

Although November was set aside as National Family Caregivers Month to celebrate the nearly 53 million people⁴ who provide unpaid care to family, friends, and neighbors, it’s important that we support caregivers throughout the year and during the entirety of their caregiving journey.

Caregiving for a loved one is no easy feat, and acknowledging the need for help is just one step in creating a better environment for both the caregiver and their loved one.