'There's a lot of guilt': The emotional burden of caregiving

When Fran Hampel's mother became ill with heart failure at the age of 87, the decision to step in and care for her mom was easy. The reality of taking on caregiving responsibilities was anything but. 

Hampel's mother had previously moved to a retirement home in Florida to be closer to family, but the COVID shutdown quickly closed the door on her independence as her health worsened. Hampel juggled grocery shopping and errands as well as increasing doctor and hospital visits.

The benefits Hampel received working as an occupational therapist in Florida public schools did little to alleviate the strain caused by needing to be in two places at once as her mother's health declined. Though she had access to family leave through the FMLA, it was unpaid. Working as a state employee for over 20 years meant she had accrued personal and sick days to use, but that left her at risk financially should her own health suffer at any time. Further, as a specialist within the school district, there was no one to take her place if she had to take time off of work. She credits the principal of the school with being empathetic and supportive of her situation, but it still left her torn between the needs of her mother and those of her students.  

"When my mom's health really declined, I had to take a lot more time [off], and then my students would miss out on getting therapy, so there was a lot of guilt on my part," Hampel says. "And then my mom was feeling guilty because I was taking this time off, to the point where sometimes she stopped telling me about things happening with her health."

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Hampel's struggle to balance it all as a working caregiver is a harrowing but familiar tale. Seventy-three percent of U.S. employees are caregivers — a family member who regularly looks after a child or a sick, elderly, or disabled person — and are identified as the fastest-growing community in the workplace, according to the Society for Human Resource Management. Working caregivers, the majority of whom are female, spend an average of 20 hours per week on direct care and other responsibilities, according to the Caregiver Action Network. The emotional fatigue, physical exhaustion and financial strain leaves its mark in the form of high levels of stress, anxiety and burnout; one in three caregivers will ultimately leave the workforce to better meet the needs of loved ones, according to the Rosalynn Carter Institute for Caregivers. 

For employers, this all adds up to bad business. Estimates by the Boston Consulting Group suggest that the U.S. will lose roughly $290 billion a year in GDP by 2030 and beyond if employees continue exiting the workforce to tend to caregiver responsibilities. In turn, supportive employer-provided benefits for caregiver workers — from direct help to financial benefits and even mental health support — have flooded the market in recent years, but unaddressed needs are still prevalent. 

According to a recent survey of 500 employees by EBN's parent company, Arizent, fewer than one in five of working caregivers say their company is providing dedicated resources to support them. 

"We have to make caregiving and planning for the future of caregiving analogous to planning for retirement," says Dr. Madhavi Vemireddy, co-CEO of Cleo, a benefit provider and caregiver-support platform. "How can we be better prepared? There's been so much emphasis on helping folks put out fires, which is important, but we're missing the opportunity to prevent some of these fires."

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According to the National Library of Medicine, the five stages of caregiving are awareness, responsibility, increasing demands, end-of-life and bereavement. Most employees will deal with at least one, if not all, of these areas while in the workplace. Vemireddy became co-CEO of Cleo at the beginning of 2023 alongside Tsion Lencho, and the duo count Pepsico, Pinterest and Salesforce as some of their employer clients. Cleo's platform offers a combination of digital and expert human support to help caregiver members find the right options and resources for their individual circumstances, no matter where on their caregiving journey they may be. 

Employers that have created support systems for their workforce are seeing the payoff in recruitment, retention, engagement and productivity. While many may provide benefits centered around working parents, there is a pressing need to offer options that cater to caregivers of partners and parents as well. Arizent's research found that 37% of employees are caring for aging parents, and 29% are caring for a spouse or partner.  

"Toward the end when I was in the ER I called my sister and I begged her to come help me because at that point, I was overwhelmed," says Hampel. "I was overwhelmed with the guilt of taking so much time off from work. My mom was in such agony and I just needed somebody to help me with that, to be there and be a support as well, because I was really getting burnt out."

Regardless of the age and condition of the person needing care, employees deserve the understanding, empathy and support that will keep caregiving duties from costing them their jobs. In addition to help with direct support, a stronger emotional support system was the most desired form of caregiver assistance, the Arizent study showed. More often than not, employees are looking for ways to feel less alone in their caregiver role. 

'It's hard to see what's out there'
Gloria Smith is a registered nurse case manager with Aetna. At home, she's raising three children, the youngest of whom, Harry, has muscular dystrophy and is in a wheelchair. Prior to joining Aetna in 2021, Smith worked as a traveling nurse, working through the height of COVID. The switch to Aetna has since afforded her the ability to handle her work cases by phone and take advantage of her employer's robust benefit offerings. 

"When I got to Aetna, I couldn't devour benefits fast enough," says Smith, who's become a sort of self-described well-being and benefit champion among her colleagues. One of those available benefits was Torchlight, a product of Lifespeak, Inc., a digital-first caregiver support platform. For Smith, it was a type of support resource unlike any she had ever had. When she evangelized the program to her colleagues, she realized hers was a common experience. 

"In passing [that benefit information] to my colleagues, I found out that a lot of them are caregivers in different capacities, whether they have adult children that have needs or parents," she says. "It's been an interesting discovery." 

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When she was working as a traveling nurse for smaller organizations, a lack of benefits made it more complicated for Smith and her family to provide the level of care Harry needed on a daily basis. It took years for them to navigate red tape and get their son on Medicaid. She found an overall lack of support for the physically disabled, let alone children in this category, she says. 

"Going through life with a child who has needs or a disability, it's a lot of trial by fire," she says. "It's all about trying things; if it explodes, you don't try it again. Everything takes four times as long and is so much more frustrating. Having access to things that support caregiving is everything." 

Torchlight has been particularly helpful in not just supporting Smith as a primary caregiver, but helping her support her other children. With a blended family who all share in providing care for Harry, Smith is able to pass on what she learns, as well as better understand how the caregiving experience impacts them. 

"I watched a webinar on Torchlight about siblings of children with disabilities, and that blew my mind because that's not something I ever knew existed, and was such a good source of information for me and my other children," she says. "It's hard to see what's out there, so it's really a profound thing when you suddenly realize these things are available."

Embracing best practices
As employers consider offerings to enhance the overall well-being of their workforce, those that will bring relief to caregivers will help a workforce stay engaged and intact. Scenarios such as Hampel's and Smith's, though very different, are both examples of why employers may want to put in the work to identify caregivers within their organization, and work to meet their varied needs. 

"You can't have well-being support without family support," says Aimee Gindin, chief marketing officer at LifeSpeak, the parent company of Torchlight. "Unless you have a medical degree, a law degree and a finance degree, you're in for an uphill battle trying to navigate a lot of these family challenges on your own. The value behind [caregiving platforms] is really democratizing access to the very best strategic caregiver support. Very simple investments can be life-changing for people."

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Pointing to best practices for employers to follow, Vemireddy emphasizes the need to remove stigmas around caregiving by communicating its importance, encouraging leadership and employees to talk openly about their needs and experiences. It also is important to gather data through employee surveys and other methods to gauge who needs help and where. 

 Implementing a support system that encourages caregiving can separate an organization from their competitors in terms of recruiting. Sixty-nine percent of employees say better caregiving benefits would be a primary contributing factor for accepting a new job, according to Arizent's research. 

For Hampel, the experience of caregiving for her mother led to the beginning of her own move into retirement, and she cut back to part-time in early 2022 so that she could spend more days with her mother. 

"My intention was to go three days a week, so that I had two days that I could really use with mom," Hampel says. "I figured maybe she can just schedule her doctor's appointments on the days that I'm off, and I had to put in for it."

When her mother passed in late 2022, Hampel decided that she would not return to work full time. Instead, she decided to keep her new schedule and pursue some much-needed care — this time, for herself.