‘I was just a daughter and a mother’: Sandwich caregivers struggle to manage it all

When Suzanne Blankenship became her mother’s caretaker, and then her father-in-law’s caretaker — all while raising her daughter — the last thing she considered herself to be was a caregiver.

“I was just a daughter and a mother,” Blankenship says. “Most family caregivers don't see themselves as caregivers. When my daughter was in kindergarten and my father-in-law was in hospice, if you said, are you a caregiver? I would say no. I've yet to find a word that really resonates.”

Yet Blankenship is part of a growing demographic of sandwich caregivers — those who care for two generations of loved ones, oftentimes elderly relatives along with their own children. Of the nearly 53 million caregivers in the U.S., 28% are sandwich caregivers, according to a report by AARP and the National Alliance for Caregiving.

For Blankenship, her decades of caregiving began when her mother was diagnosed with cancer in her 80s. At the time, Blankenship worked for Coca-Cola, and would travel between Denver, where she lived, and Dallas, to help her mother through treatment.

“That started my caregiving journey,” she says. “I had to take some time off from work to be there with her, for surgery and radiation. Fortunately I was at a level in the corporation where I could do some of my work while being there for her at the doctor's office or the surgery center.”

Sixty-seven percent of sandwich caregivers work full-time, and spend an additional 22 hours per week caring for their loved ones, a report by the National Alliance for Caregiving and caregiving advocacy organization Caring Across Generations found. Forty-nine percent say they have gone into work late, left early or taken time off to manage care responsibilities; 19% took a leave of absence; and 14% were forced to cut their hours to part-time.

Read more: Wellthy and New York Life help caregivers avoid a damaging leave of absence

For Blankenship, her caregiving responsibilities snowballed as time passed. While her mother recovered from cancer, she would go on to struggle with heart issues and eventual memory loss. After Blankenship got married and became a mother herself, her aging in-laws soon needed care. Navigating these additional stressors became a full-time job of its own.

“It was really a challenge,” she says of juggling everything from preschool to elderly healthcare. “Someone asked my daughter what her parents did for work, and she said, ‘My daddy does computers and my mommy does Grammy's insurance.’”

Cutting through the red tape 
These logistical hurdles are what Cariloop, a coaching and case management platform, helps caregivers navigate. The platform can be offered as an employee benefit, and currently pairs their nearly 350,000 caregiver members with care coaches, who help them navigate the full spectrum of needs that may come up.

Care coaches serve as a point person between the caregiver and their family and the services they may need, says Gayle Messmann, chief service officer at Cariloop. The care coach will do research and outreach to find care facilities or nursing services for the family member, make calls to insurance companies on behalf of the caregiver, and even research mental health professionals to ease the mental load on the caregivers themselves.

Read more: Nurses are risking their mental health to keep working

“We strive to build trusting relationships from the very beginning with our members, because we're asking them to share their most vulnerable times in their lives with us,” Messmann says. “That can include anything from financial and legal assistance to mental health and wellness. What is causing you the most anxiety right now? Let’s solve for that.”

Eighty percent of caregivers say their responsibilities hinder their productivity at work, and Cariloop estimates that its program has saved employees 200,000 hours of productive time that would have otherwise been spent on caregiving tasks.

“The care coach is really dealing with all of the red tape and all of the return phone calls, so that the loved one does not have to worry about dealing with any of that,” Messmann says. “Caregiving ebbs and flows. It might be a month down the road. It might be three months down the road. But they're always going to have that same dedicated care coach to reach out to. That person knows your story.”

Caregivers can’t do it alone, Messmann says. Often, a person will reach out to her team after they’ve already found themselves in “crisis mode,” she says. A Cariloop coach may be the first person they’ve felt safe talking to about what’s happening in their lives.

“Almost always something has happened and they’ve said, I really don’t know what to do,” Messmann says. “We’ve had people calling us and just saying that they didn't even want to get out of bed because they already feel so defeated before they even start their day.”

Empowering caregivers to ask for help is often the hardest step, Messmann says. The dialogue around caregivers needs to change — and the more support, the better.

“We don’t talk about it — there is such a stigma still to caregivers, because you don’t always recognize yourself as a caregiver when you’re taking care of a loved one, because that’s just what you do,” she says. “So being able to create a safe space with employees and their managers or HR can allow them to really share what is happening so that employers can find benefits to support them.”

“Perfection was impossible” 
In 2010, Blankenship reached her limit.

Her daughter was in kindergarten, and her in-laws had relocated to be near her and her family following a cancer diagnosis for her father-in-law. As Blankenship worked to help them settle into their new home and find new healthcare providers, she was simultaneously searching for hospice providers for her own mother.

“I was caring for all the elders and I was trying to be the poster child for mothering, and I just wanted to scream,” she says. “Where do I find a minute? I'm a perfectionist, and it bothered me so much that I couldn't be there to do every last thing for my mom, and I just realized perfection was impossible.”

Read more: 3 steps to help lift the burden off the shoulders of employee caregivers

The National Alliance of Caregivers report found that a third of sandwich caregivers report a high level of emotional stress, and one in five feel financial strain. For caregivers in the workforce, this is where an employer has the opportunity to alleviate some of the burden, Massmann says.

“Most employers out there want to support their employees,” she says. “But they might not always know what's actually happening in an employee's world to really be able to create that best benefit. Survey your employees and really find out what it is that they're looking for. What do they need help with?”

Setting boundaries 
For Renee Fry, CEO of estate planning benefit provider Gentreo, her experience as a sandwich caregiver has helped her create that safe space for her own employees. Fry cared for her father through Alzheimer’s, moving into her parents’ home in Pennsylvania with her 10-year-old son. She quickly realized that being open about her caregiving responsibilities helped clients and employees understand her burdens, and her necessary boundaries.

“When I could put that label on it, people knew that was something that required my time and attention,” Fry says. “If I was just saying I was being a good daughter, people wouldn't understand. You have to set those parameters: I’m a CEO, I’m a founder and I’m a caregiver.”

Though Fry’s professional life revolved around providing estate-planning benefits and issues regarding eldercare and end-of-life planning, she still felt unprepared to manage those challenges in her personal life. She was eventually able to get free resources for her father, who was a U.S. Navy veteran, through the Veterans Administration.

“You kind of learn these things because you're in this position, but I had no idea,” Fry says. “One thing that we did not know is how much the government can help. And that's something where it's like, wow, how do you tell people about that? Because it just lifted a huge burden off of us from the care perspective, but also the cost perspective.”

Blankenship, who’s written a book based on her caregiving experience and speaks out as an expert and advocate for the community, encourages employers to have esources at the ready for caregiver employees who are sorting through legal, financial and health-based demands.

“Caregivers don't have time to look [for those resources],” Blankenship says. “If you're a big enough company, have an expert that knows what you need and can help foster a community or better communication between a manager and an employee.”

Read more: Why the stigma surrounding career breaks is harmful to women

Fry’s experience shifted her approach to benefits for her staff of 16, and Gentreo now offers more support for sandwich caregivers. She recommends talking with loved ones about their end-of-life choices, and making sure employers are in a position to alleviate the major pain-points of caregiving.

“Living through this ourselves, we realized that helping people with the cost, time and emotions was a real need,” she says. “If you can have the discussion before bad things happen, it’s much easier.”

Above all else, caregivers need to know they’re not alone — in the workplace, or in society, Massman says. Normalizing an experience that most people will go through can empower caregivers to ask for much-needed help.

“By asking for help, it's almost that feeling of, I have already failed,” Massman says. “But this is normal. There are millions of people across the world feeling the same way. If you haven't been a caregiver yet, you will be at some point in your life.”