What happens when a family caregiver needs caregiving?

Mary Ann Evan, now 82, was a long-time caregiver to her 102-year-old mother. Evan experienced a crisis when her mother's ability to be independent suddenly changed.

"My mother had lived with me for 15 years and her health had started to decline," she says. Then, as Evan relays, her mother suffered a serious fall. The aftermath was grave.

"When she came home, it was clear that she had been discharged too early from the hospital," Evan said. "She couldn't do anything. She could not dress herself. She couldn't go to the bathroom by herself. I could see that I didn't have the [physical] strength to do it."

But Evan, as a woman in her eighties, wasn't fully equipped to become a full-time caregiver. "I was angry that I was unable to do what she needed to have done," she continued. "My mother said, 'I don't want to be a burden to you.' She always said that. It was clear that my mother needed round the clock care."

These paid home care services were not covered by Medicare; fortunately, Evan had savings that helped her find an experienced empathetic nursing professional named Vida Bampoe, who came to her New York home to take care of Evan's mother's essential needs — including putting fresh clothes on her mother, toileting her, and taking care of hygiene.

Bampoe took on other tasks, too: scheduling follow-up medical appointments (including rehabilitative and therapeutic after care), and devising a scheduling master plan for professional caregivers to come to the home. According to Mary Ann Evan, the hospital had not helped at all with any of these essential needs before discharging her mother.

Evan said she is still upset, stressed and traumatized by the entire experience, especially given that the hospital staff did not seem to show any regard for her mother's health and well-being.

Evan's situation is far from unique. For many caregivers, the lack of support, financial concerns and other day-to-day caregiving stressors can translate to mental health issues, chronic issues with physical health and even a higher likelihood of life-threatening diseases among caregivers themselves.

Caregiving

There are well over 53 million caregivers providing services to aging adults and adults and children with complex needs in the United States, according to a 2020 report for the National Alliance for Caregiving in collaboration with the America Association of Retired Persons (AARP). 

"Caregivers are incredibly marginalized, even though caregivers are the backbone of our society," said Dr. Feylyn Lewis, Ph.D., program manager for the Students for Health Equity program at Vanderbilt University's School of Nursing. "As the saying goes, care work helps make all work possible," Lewis said, but too often caregivers — and recognition for caregivers— is non-existent, especially for Black, brown, low-income and immigrant families, she said.

But stress can have physical effects on us. Indeed, as experts tell Salon, there's a psychobiological impact of stress — particularly among caregivers who have to deal with systemic inequity. 

According to Dr. Martin Picard, Ph.D., associate professor, and director of the Mitochondrial Psychobiology Group at Columbia University Irving Medical Center in New York, "stress experiences will naturally affect our biology. Our body will have very real psycho-biological responses."

"The chronic stress of caregiving and inequity can have deleterious consequences," Picard continued. "On a biological level, we are either resilient or are vulnerable and get crushed. The body ends up suffering the consequences of chronic stress."

Stress hormones affect our body beyond our mere brain chemicals. "Every cell in the body can be impacted by stress hormones," Picard says. Picard also warns that chronic inflammation is linked to stress, and in the long term, chronic inflammation can lead to a host of health issues, including cardiovascular disease.

Research into caregiving reveals a common sequence of events: caregivers often get depressed, which then makes them more vulnerable to a range of mental health issues. Caregivers are also more likely to not have much support. In some instances, caregivers are more likely to develop chronic health issues themselves, experience long-term issues relating to caregiver burnout and more. The burden for caregivers can be significant, as detailed in research papers from the journal  BMC Palliative Care and the European Journal of Cancer Care. Professionals recommend that caregivers get regularly screened for their own physical health and mental health needs.

Caregiving and parenting special needs children

As a family caregiver to his son who has special needs, Dr. Shailen Singh, Ph.D., admits that caregiving can be incredibly stressful.

"Being a father is central to my identity," said Singh. "But many families of children who have disabilities do not get an operating manual either about how to be a caregiver, nor do they get help on how to receive caregiving," said Singh, who is assistant professor in the Department of Occupational, Workforce & Leadership Studies at Texas State University.

Singh's personal family experiences have influenced his career choices, his research, his daily work schedule — and pretty much every facet of his life. While Singh is quick to note that he comes from a position of privilege, being a caregiver of a special needs child is still quite hard, he says. Together with his wife, the couple are raising three young children; their middle child is neurodivergent, has cerebral palsy and is non-verbal, Singh said. The university administrator famously detailed his family caregiving experiences in a 2021 Ted Talk titled "Parenting a Disabled Child: Nurturing Self Worth."

"There are significant barriers alongside the caregiver's resources themselves" Singh said. In particular, when it comes to getting educational and therapeutic services for his son with special needs, sometimes the logistics of caregiving, transportation, and juggling non-caregiving work and other needs can be overwhelming.

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"The pandemic created new problems and it made existing problems that much worse for caregivers," he said. Singh says he finds it stressful and emotionally exhausting when he hears others state that the pandemic is "over," and that related childcare and schooling problems are a thing of the past—a position that, in Singh's opinion, is absolutely incorrect.

According to Singh, family caregivers, particularly children with special needs, often have to navigate both small and large challenges every day. And when it comes to special needs children and/or children with medically complex needs, most caregivers do not have an easy time to hire or trust that backup care or support is available. Singh said that caregivers can become isolated caregiving islands with no or minimal support.

"My perspective is that you just have to get stuff done. And perhaps that's not healthy at all," said Singh, admitting that he doesn't really have time to think about his own mental health or balance at this point in his life. "I just want my kids to be happy," he continued.

Last summer, Singh's son's public school located outside the Austin, Texas area, initially offered the family only 30 minutes a day of school-based learning. "Tell me why neurotypical kids are getting more school-based hours and time than special needs kids?" Singh asked school staff. After a lengthy period of advocating for his son together with his wife, the school finally adjusted their son's summer school schedule to make it equitable compared to other neurotypical children.

Healthy and unhealthy coping strategies for caregivers

"Every aspect of your health can be really impacted by long-term caregiver responsibilities, "said Dr. Sheria G. Robinson-Lane, PhD, MSN, MHA, RN, who is an assistant professor at the University of Michigan School of Nursing in the Department of Systems, Populations, and Leadership and affiliate faculty with both the Michigan Alzheimer's Disease Center. She continued: "Stress can really take a toll on your physical health. Every aspect of your health can be really impacted by long-term caregiver responsibilities."

Robinson-Lane says that caregivers sometimes turn to unhealthy coping strategies to deal with the stressors of their duties, including abusing drugs like alcohol or marijuana. "We need to talk about healthy coping strategies among caregivers," Robinson-Lane stressed.

Letty Arroyo, who is the sole caregiver to her immigrant mother in New York, says she has learned to be more mindful of managing stress in her own life. Arroyo has a big family and many siblings who live locally; still, Arroyo feels little support in her duties. Two of Arroyo's siblings are unable to consistently or reliably help with caregiving tasks due to substance abuse issues. Arroyo's health issues include being a type-2 diabetic and having thyroid issues for which she takes daily medication.

"After I became a caregiver, I realized I wasn't taking care of myself, not just physically but emotionally. I was always on the go. I had to do everything for my mother since she doesn't speak any English. I had to be her advocate all of the time," Arroyo said. "Since I have my own health issues of my own, I had to learn to create balance," she added.

Caregivers and health insurance burden

Experts say many caregivers, particularly aging caregivers, often may not have any kind of plan for themselves in terms of health insurance, retirement planning or even savings. Many activists, family caregivers,  aging advocates and others have been disappointed about the lack of federal funding for programs to address these issues.

Ai-jen Poo, President, National Domestic Workers Alliance and Executive Director, Caring Across Generations, said there is an immense need for caregivers that is not being addressed.

"We essentially have not adapted any of our systems, policies and culture to support the incredible shift in our population. With the Boomer population aging and living longer, and as we live longer, [we] need long-term care and long-term supports and services for caregivers and those who need care."

Part of the problem is the fractured public health care system in the United States. "A lot of people think that Medicare covers long-term care and it does not," Poo said.

And the people providing caregiving are often from marginalized groups or are unpaid, underpaid or exploited.

"We have overstretched family caregivers who are mostly women. We also have an underpaid, overstretched direct care workforce who are majority women of color who work incredibly hard—skilled work— but they still struggle to make ends meet as well," Poo said, noting that paid home care workers typically have an average annual salary of $21,000. 

Poo recounts the story of a home care worker she called Deborah — a pseudonym to protect her privacy — who lives in Georgia. According to Poo, Deborah loved the work and caring for individuals in her community; yet in 10 years of work, her salary did not surpass $8 an hour. Deborah shared with Poo how she struggled to pay for gas and struggled to pay her own bills. That stress was "deteriorating" Deborah's health and she ultimately left the industry for a manufacturing job where the hourly wage was $15 an hour, Poo said.

"Medicaid requires family members to deplete their assets. The dynamic is to impoverish yourself, " Poo said. Poo explained that both the live-in family caregiver's finances and the finances of the individual who needs care need to be completely depleted before Medicaid will agree to provide certain services—i.e. the caregiver can get full coverage if they decide to put their aging relative in a nursing home. But typically low-income and middle-income families cannot get any paid care services covered if they want their loved one to receive care at home—that has to come out of pocket. According to Poo, 88% of individuals want to receive care at home.

"Medicaid is biased towards institutional care and it does not cover care that family caregivers need. Paid direct care professionals also lose out as well," Poo said.

For Mary Ann Evan, the entire experience of being a long-time caregiver for her mother has been eye-opening, and she bore witness to just about all of the systemic issues that the aging population faces. Evan is  often reduced to tears, especially when she hears harrowing and stressful caregiving stories from others who have little to no resources.

While Evan's health is good currently, at 82, she has been proactive about finalizing— and funding— her own caregiving master plan. But this is a difficult question that many cannot answer:  Who will be the caregiver's caregiver?