BETH WAGNER-HIETPAS INVOKES THE FORTITUDE and patience of the Serenity Prayer each morning, before she begins her busy day, which is spent caring for her father, who lives across the road on the family farm. Last year it required hospital admissions and daily outpatient visits. He turned 89 in February and Wagner- Hietpas has been primary caregiver for him and her mother for the past two decades. Her mom passed away in 2005.
“My mother had her first heart attack in 1992, and it just kind of happened that I started taking care of them,” she says. Wagner- Hietpas’ commitment grew, especially when her mother lost a leg. “I would take my vacation time off work, and then it was sick time, and finally, a leave of absence to take her to Mayo Clinic.”Last year she found herself at Mayo Clinic again-with her dad, for two months. In all of this, Wagner-Hietpas, 52, has found herself pressed firmly in the middle of what you could call a giant Dagwood: a multilayered sandwich of expanding family needs.
It wasn’t until 2006 that the term “Sandwich Generation” was coined by Carol Abaya, a national elder care expert, to capture the position Wagner-Hietpas and a growing number of women find themselves tucked into. Abaya says there are three types of sandwich generation members: traditional, those sandwiched between aging parents and their own children; club, those in their 50s and 60s sandwiched between aging parents, adult children and grandchildren, or those in their 30s and 40s with young children, aging parents and grandparents; and open-faced, anyone else involved in elder care.
The number of people in this overall group has at least doubled in the last eight years, according to Bonnie Sundal, senior equal opportunity program specialist at the UW-Madison, who in that same amount of time has been creating local educational sessions geared specifically to the Sandwich Generation.
Why is it growing so quickly? Barbara McVicker, a national speaker and elder care expert who has operations in Madison, says that because women delay childbearing, and their parents and older generations are living longer, they get stuck in the middle more than ever before, “This is a tsunami I think we’re totally unprepared for,” she says. “It’s possible someone 70 years old is taking care of a 95-year-old mother.”
LANDING IN THE MIDDLE
Karen Stuesser, 54, whose parents are both in their 80s knows all about that call too. Stuesser works part-time as a school nursing assistant, and also has a busy husband and three daughters, ages 18 to 24, the youngest of whom is still in high school.
Both of Stuesser’s parents have pacemakers , use walkers and are prone to falls. But, she says, “They really want to stay at home.” Stuesser and her siblings have tried to make that happen, but it’s been a challenge since her parents live in the country and neither has driven for the past two and half years. Recently, Stuesser’s father, who is legally blind, was admitted to hospice care. There are loads of hospice care places that people could go to such as Hospice Cincinnati, however, a lot of old people would prefer to stay at their home.
Stuesser says a typical week helping her parents consists of three or four trips to and from their homes, about 12 hours total, plus another three to fours hours a week to and from appointments, organizing care, coordinating other caregivers, and on the phone with a large variety of doctors. She and her sibling share caregiving, including helping their parents get dressed, ready for bed, prep and serve meals, do dishes, buy groceries, do laundry, remember to take medications—and more. She finds the caregiving energizing.
“Even on the days when it seems like I’ve accomplished absolutely nothing that I needed to get done, I can still tell myself that one very important thing has been accomplished—we have all grown one day older together,” she says.
Darby Puglielli, McVicker’s daughter, matches the sandwich profile as well. Puglielli, 38, has cared for her husband’s grandmother, mother and father over the past few years, while raising her own young children. “It’s a lot harder navigating the hospital system with a 2-year-old,” she says. “It’s difficult talking to doctors because he’s running down the hall with Grandma’s walker.”
Puglielli says her part-time job gives her flexibility so she can help with doctor appointments and other care coordination. That helps. So do communication and grace, says Steusser. “Being able to talk about it with my parents, husband and daughters has been really helpful,” she says. “I try to make sure my parents understand I’m there because I want to be.”
THE GREAT BALANCING ACT
Striking a balance also requires careful preparation and open communication with her siblings. Every Sunday at 6 p.m. Stuesser and many of her seven siblings gather to conference via Google Hangout to compare schedules and discuss their parents’ care for the past and upcoming weeks. “We see where we have holes and where we need to fill in,” she says. “There’s a lot of coordination that goes on. We are eight different people with eight different schedules and eight different opinions.”
She says with her own children at home, parental caregiving duties and spending time with her husband, the hardest thing to find is enough time for herself. She realizes the importance of self-care and says one thing most caregivers don’t get enough of is sleep.
Beth Wagner-Hietpas can relate. She cares for her father, runs a heath and wellness business full time from home and is married. She has assumed the majority of caregiving duties but says she can lean on two sisters and, in a pinch, her seven brothers. She also draws on her husband for support. Married three years ago she calls him an amazing and understanding man. “We moved here, and my life surrounds my dad and his care,” she explains. “It’s supposed to be our newlywed stage, but I know I’m here for a purpose, my dad needs me and it’s where I need to be at this time in all our lives.”
Wagner-Hietpas compares caregiving to constantly balancing in the “fight or flight” mode. It’s hard, not knowing what to expect when the phone rings from Dad, and with no set scheduling, what any given week will bring for his care. She bounces between her father’s appointments—primary care doctor, chiropractor, eye, ear, dental, foot, heart, sleep, “You name it,” Wagner- Hietpas says.
Part of her caregiving job involves keeping all siblings in the loop, a monumental task in itself. Her sisters are very supportive, she says, and she is thankful for a dear friend who has been through this before, and knows just the right words of comfort and encouragement.
To manage that fine balance, eldercare expert McVicker says caregivers need to set boundaries, both emotionally and physically. They need to know how much they can and can’t do, and set an exit strategy for the time when they will need to ask for help. “Caregivers sometimes think they are the only ones who can do this right, but they have to have an already prepared list of tasks to delegate,” she notes. “It’s the hardest thing to do because they feel selfish, but they’re setting themselves up for disappointment if they wait too long.” Or even possibly resentment and exhaustion.
COMPASSION IN THE CHAOS
She says she actually spends her fun time on her parents’ farm, walking her dog or cross-country skiing, even doing jigsaw puzzles with her mom. “It validates for them it’s still okay to be out there, and they love nothing more than to see us enjoying their property,” she says. Green Bay Packers games are the best on her parents’ large projector screen, she says, and adds with a pot of chili, it makes for a nice afternoon.
“I’m still caregiving, but it really lightens the mood and I think my parents feel much better when we do that because otherwise they just feel like a burden,” Stuesser says.
Between work and caregiving, there isn’t much time for personal attention. In last few weeks Wagner-Hietpas has noticed her stress level changing, and she admits that wanting the best for others can put a caregiver’s personal health in second place. “I try to balance and do what I can,” she says. Date nights, walks and long drives help her cope. But, she says “I struggle to find the time.”
With wisdom, UW senior program specialist Bonnie Sundal advises caregivers to be self-compassionate, too, and to be of healthy mind and body, a challenge many face. “It’s very taxing to do this, so remember to take care of yourself because if you don’t, you can’t take care of anyone else,” she says.
“There are days,” says Wagner- Hietpas, “when I think what am I doing? I don’t have a life of my own.” And yet, she encourages others in her situation. “You will be rewarded greatly because you’re helping others and that’s what life is really all about,” she says. “Don’t take things personally, although that’s hard to do. It’s a warm feeling when you know you’re there for them.”
THE NEXT GENERATION
And, adds eldercare expert Sundal, part of educating today’s Sandwich Generation— Stuesser and Wagner-Hietpas included—is to prepare the elderly population of tomorrow. “They are going to prepare and get things in order so it’s not so much work for their children,” she says. “The more we educate the Baby Boomers, the better it will be for the next two generations.”
The amount of time it takes to be a full-fledged member of the Sandwich Generation is often underestimated, says McVicker. She speaks to many people around the country each year on this topic, and asks audiences what dismays them about caregiving. She recalls: “A gentleman spoke up and said ‘the time.’ He had no idea how much time this would be.”
Puglielli agrees with her mother, and offers this advice: “You know that saying, ‘it takes a village to raise a child,’ well it takes a village to help people on the other end too.”
Stuesser says she’s learned so much about her parents by spending this time with them. Her mom shared how as a newlywed, she would watch her new husband shave in the mornings, just because she found it interesting. “I never thought about that before, them as newlyweds,” Stuesser says. “They were both young, and mom was totally infatuated with this handsome husband of hers.”
Wagner-Hietpas says caregiving is hard work, but caring for her dad gives her a new lease on life. “Even with the everyday stresses, I tell others to cherish every moment you have,” she concludes. “I love my parents. I feel like I did give up a lot of time in my life and energy, but it’s all worth it. It really is. When the day is done, I’d do it all over again.”
– Jen Bradley