‘What I Wish I Knew Sooner About the Mental Health Toll of Caregiving’

Caring for others is something Adkins finds joy in. Her day job is advocating for the rights and well-being of caregivers and their families through her administrative role at the national nonprofit Caring Across Generations.

But when her mother’s condition was at its peak, she found herself in unfamiliar territory.

It’s a matter of a parent no longer being the person you once knew, and their care being in your hands 24/7, she says.

“I wasn’t finding joy in things that once brought me joy, whether it was comfort television shows or foods that I once liked,” Adkins says. There was a point before her mother’s death that she faced burnout. She realized she needed support, but wasn’t able to access it, she says. “I was just existing, but I wasn't living.”

Many people in the United States find themselves in similar shoes as Adkins, being the primary caregiver for a family member and being burned out.

Middle- to low-income families suffer the most, when it comes to the crisis affecting caregiving.

“Families are stuck in this decision process of: ‘Do I access lower quality resources, or do I step in and provide caregiving?’” says the report’s lead author, John McHugh, PhD, adjunct assistant professor of health policy and management at Columbia University Mailman School of Public Health in New York City. When these families cannot afford quality, long-term healthcare, the burden of caregiving falls on family members, often regardless of medical or financial situation.

“We found that [family] caregiving alone on an annual basis adds $28.3 billion to healthcare costs, just purely out of the decrease in self-reported health,” Dr. McHugh says.

Caregivers of individuals with neurological disorders account for a large share of this unmet need. The Columbia University research showed these patients require an increased amount of care, but are also less likely to be admitted to a high-quality skilled nursing facility.

“While I was providing care for my mother, I was witnessing her having hallucinations, delusions, and violent or angry outbursts,” Adkins says. She understood that these behaviors were related to her mother’s neurological illness. “That still didn't negate the fact that it was traumatic,” she says.

The Columbia University study highlights the truth of what millions of caretakers in the United States have been experiencing in higher and higher numbers. There are swaths of people stuck in positions of caring for others without the ability to care for themselves, and that includes caring for their mental health.

“Family caregivers often don't have the money or the insurance coverage that they need, and go unsupported for long stretches of time — sometimes forever,” Adkins says. “No one should be unsupported in this journey.”

• Shifts or imbalanced relationship dynamics between the caregiver and the one receiving care
• Strains on other preexisting relationships, including the person needing care as well as others, such as the caregiver’s spouse
• Lack of time for individual needs or self-care
• Hypervigilance from consistently being available 24/7, especially in environments where an ill loved one may need closer supervision or have mental health symptoms

• Depression
• Fatigue
• Significant changes in sleep, including deprivation or developing a sleep disorder
• Lower self-esteem
• Feelings hopeless or helpless
• Neglect or abuse of those in care

For Adkins, it wasn’t until after her mother’s passing that she sought out healthcare specifically for her burnout. “I knew I needed a break and I took a leave of absence from work to get the care that I needed, and began a long journey of healing,” she says.

The help she needed included group therapy, psychiatry, talk therapy, dialectical behavioral therapy, cognitive behavioral therapy, brainspotting, and transcranial magnetic stimulation, Adkins says. She says she was also very intentional about seeking out mental health professionals who shared some of her life experiences, including her Black womanhood.

After seeking support, Adkins is able to do things a little differently as she now cares for her father with dementia. While her healing is still a work-in-progress, part of her work now is to prioritize herself instead of solely others, she says. “Part of my treatment plan is figuring out: How do I not crash and burn this time around? How do I stay afloat? How do I seek ease? How do I maintain a level of peace and of calm and a level of gratitude?”

Here are some steps Adkins has taken to have more support in her current caregiving role:

• Communicate diagnoses with friends and family early on. Allowing others in can give them a better opportunity of offering the right kind of help, Adkins says.
• Understand who’s on your medical support team. It can be difficult to connect with different specialty physicians and understand the services the patient needs. Adkins suggests relying on a team of medical providers, especially if there’s more than one diagnosis to manage.
• Determine if respite care (a short term break for primary caregivers) is an option. Such services are available through some state-funded programs, as well as federal agencies, such as the U.S. Department of Veterans Affairs.

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• Have conversations with the family member sooner about their care preferences. Adkins has made a point to talk to her father while he is still able to share his desires for his own care. This removes some of the burden of making important decisions as the caregiver, which can often come with anxiety.

• Practice self-care, including eating well, moving, getting quality sleep, and staying hydrated.
• Practice self-compassion.
• Speak to a mental health professional.
• Find support, either in-person or online, to support your mental health as a caregiver.

After her experience with caregiver burnout and then finding the support she needed, Adkins decided to create her own nonprofit Caregivers of Color Collective.

“Our purpose is to be a resource hub for caregivers of color that are encountering caregiving, and making sure that there are resources presented in a way that is easy to access so that folks can find care that is culturally relevant to them,” she says. Currently, the organization is sharing this information primarily through its Instagram page.

For identify-specific mental health support, whether it’s an inclusive mental health provider or connection with your community, some resources to get started include:

• Inclusive Therapists
• Therapy for Black Girls
• Latinx Therapy
• BEAM
• Therapy for Black Men
• The Trevor Project
• Asian Mental Health Collective

There are also increasing numbers of caregiver-specific resources and groups online. A few of these resources include sites like Family Caregiver Alliance and the ARCH National Respite Network.

• Many of the caregivers in the United States are family members. Due to a lack of systemic support for family caregivers, the role can lead to significant and lasting mental and emotional strain for the ones providing the care.
• Aisha Adkins, a caregiver to her parents who has experienced burnout, experienced the impact of this crisis; Adkins bore the responsibility of caring for two parents with degenerative neurological conditions, as well as leading a day job that supports other caregivers.
• Caregivers who are struggling can get support by connecting with family and friends, joining support groups and communities, and seeking professional mental health care. Practicing self-care, such as eating well, exercising, sleeping well, and showing self-compassion, can help, too.