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Caregiver Blog


Caregivers in the ‘sandwich generation’ often surrounded by challenges:

23, Aug, 2014

NORTH SEWICKLEY TWP. — If Rose Potts wanted to do something, her four daughters would make it happen.

The former NorthSewickleyTownship resident wanted to go to France, so she and her youngest, Erin Sherer, made the trip in the summer of 2005.

She liked to sit outside, so her second-eldest, Jamie Perza, would sit with her, sometimes putting off other responsibilities such as cleaning her Franklin Township home, where Rose primarily stayed after her Alzheimer’s disease progressed.

Rose wanted to age at home, and not in a nursing facility, so together, Jamie, Erin, eldest Toni Gohean and second-youngest Michele Cicconi worked to care for their mom for nearly five years until her death at age 71 in 2006.

During the time they were providing her care, three of Rose’s daughters also were raising children of their own, making them part of what has become known as the “sandwich generation.”

Individuals living in this situation, most commonly in their 40s and 50s, are caught between caring for both their parents and children at the same time, often experiencing financial stress and other hardships as a result.

QUESTIONS AND CHALLENGES

Over the past several weeks, U.S. Sen. Bob Casey has held hearings across the state on the challenges faced by the sandwich generation as part of his work on the Senate Special Committee on Aging.

The hearings also are an opportunity to gather information for his upcoming bill, The Caregiver Corps Act, which would establish a program to enlist community members who want to care for others, and ensure families have access to the “best possible” volunteers, Casey said June 30 at a Pittsburgh hearing.

Casey, D-Scranton, pointed out that the issue is “too infrequently examined,” even though a 2013 Pew Research report found that nearly half — 47 percent — of middle-aged Americans are part of the sandwich generation.

Many also are part of middle class families, and already face a daily struggle to save for retirement, Casey said.

Adults with annual family incomes below $75,000 are more likely than those with higher incomes to say they have parents who need help, according to the Pew report. And they’re also more likely to provide most or some of the help to a needy parent than those in higher incomes.

The median household income rose 70 percent in the two decades from 1989 to 2010, Casey said, noting that it sounds like good news, until it’s compared with even larger increases in expenses such as college tuition and health care costs.

“Compounding all of these economic concerns and challenges, are the challenges of those in the sandwich generation,” he said.

Family caregivers often tap into their own savings to take care of their loved ones, Casey pointed out, and sometimes they cut back hours or quit their jobs altogether.

“This allows them to provide care, but there are lost wages and less retirement savings as a result,” he said, noting that those losses top $283,000 for men in the sandwich generation, and $325,000 for women. “So they make a very conscious choice to take care of a family member knowing that or experiencing the fact that that will have that adverse impact.”

In 2009, approximately 1.85 million Pennsylvanians served as family caregivers, providing almost 1.77 billion hours of care, according to a 2011 AARP Public Policy Institute report.

“We have to ask some fundamental questions. One question is: Where is the time for these families?” Casey said at the hearing. “How do they do it? How do they make ends meet and still provide the kind of care and support that they want to provide?”

FINDING ANSWERS

Like so many other families, Rose’s daughters just did what they had to do.

The women aren’t exactly sure when Rose first began showing symptoms of Alzheimer’s, but a couple of them noticed small changes here and there after their father, Bill, died in 2001, and Rose was diagnosed with thyroid cancer about a month later.

“I just remember distinctly after my dad passed away, she asked me how to write a check,” Toni said, admitting that her sisters weren’t as convinced because their dad had always handled financial matters.

“It just struck me the way that she didn’t know how to do it,” she said. “That was kind of a defining thing for me.”

After thyroid surgery, Erin took a new position closer to North Sewickley and moved in with her mom, who was about 66 at the time. Soon, Michele and her then-toddler daughter Maddie also moved back home to help.

“I kind of personally felt like she was lonely,” Erin said. “She was so used to having my dad around and she would make comments to me like, ‘I have this big house and I’m the only one here.’”

By Rose’s 69th birthday, the memory loss had become more significant. Some things she couldn’t remember, such as what a men’s necktie was called. But other things she never forgot, such as the fact that Jamie’s then-teenage daughter, Chelsea, loved the color yellow.

“We would be in the car going somewhere and she would see something yellow … and she would say, ‘Oh, Chelsea would like that, it’s yellow,’” Jamie recalled. “It was just little things like that.”

STUCK IN THE MIDDLE

Rose’s daughters played different roles in her care — Michele handled finances, Toni oversaw a lot of medical aspects, Jamie took her to appointments. Rose received Meals on Wheels at one point and the women briefly considered hiring someone to help her at home, but ultimately she went to live with Jamie during the week. Other options such as adult day care just weren’t as accessible at the time, the women said.

On weekends, Erin and Michele would alternate taking her to their respective houses, with Toni filling in on odd weekends.

Rose’s daughters had a lot of family support, but many families cannot get the help they need, Casey and several witnesses said at the hearing.

“I believe and the data shows that far too many people with these challenges do not have access to programs and services to make their lives just a little bit easier when they’re providing this service and doing this work,” Casey said.

Public services are essential for supporting family caregivers, according to Mildred Morrison, administrator of the Allegheny County Area Agency on Aging.

“But many of those caregivers are caught trying to understand the medical and cognitive changes, accessing resources, maneuvering in an unfamiliar but complex long-term care system, as well as coping emotionally, physically and financially,” she stated in her testimony.

Rose’s daughters agreed that taking care of her didn’t change a lot of their plans, but it was sometimes difficult, especially while managing their children’s activities.

“Usually I would just take her and do whatever we were doing,” Michele said. “Once in a while I would have to drop her off somewhere depending on what it was … but you just took her wherever and, you just did.”

Caregiving wasn’t a financial hardship for the women thanks to their father’s pension, but they acknowledged they were fortunate not to have to pay for more services and help.

“We also, I think, kept her home a long time,” Toni said. “Probably if Jamie wasn’t in the position and if Bill (Jamie’s husband) wasn’t the guy he was, … I mean, he was willing to do whatever he needed to do, and so we had that option.”

Still, the sisters and their families sometimes struggled in other ways.

“There was definitely times because it does get hard,” Jamie said. “I had my husband there who, he was my strength a lot of the time because if I got frustrated he would just say, ‘Leave, I got this.’”

Caregiving consumes your thoughts, Toni said, even when you’re already consumed with trying to raise a family.

“When it starts to snow on certain days I’ll still think I need to call her and tell her not to leave, because even if you’re not there you have to be concerned,” Toni said.

Rose’s grandchildren helped out, but it was sometimes hard on them, too.

“My mom was very involved with the kids, all the kids, and so they knew her as grandma … they grew up with her taking care of them,” Toni said. “And I remember the one day when my daughter said to me, ‘Mom, grammy’s not grammy anymore.’ And so, that relationship changed and instead, the kids are taking care of her.”

PEELING BACK LAYERS

While the definition of the sandwich generation is fairly specific, experts have pointed out that there are different ways to build a “sandwich.”

Older adults are now living longer, creating situations in which middle-aged adults may be taking care of not only parents and children, but even elderly grandparents. In other families, adult caregivers may be spread even further, taking care of older relatives while also helping to support adult children and grandchildren.

A 2012 U.S. Census Bureau report on American Community Survey data from 2009 to 2011 showed an increase in the number of multigenerational households across the country, with many families “doubling up” due to issues such as high housing cost. In the three-year data file, approximately 4.3 million or 5.6 percent of the 71 million households in the United States were identified as multigenerational, compared with just 3.7 percent in the 2000 Census.

In BeaverCounty, between 3.3. and 5.6 percent of households were identified as multigenerational, consisting of three or more generations, according to the report.

One of the most common types of multigenerational households includes a householder, a child of the householder and a grandchild of the householder, the report showed.

In her testimony, Morrison referred to families who are also taking care of grandchildren as the “double-decker.”

Valerie McElvy, director of the Retired and Senior Volunteer Program in BeaverCounty, said she was shocked to learn how many families are living in such a caregiving situation.

A few years ago, RSVP started a club to allow local grandparent caregivers to come together and support one another, but McElvy said many of the attendees were dealing with very serious issues that the Aliquippa-based program wasn’t equipped to handle — from abuse and bullying, to custody battles and financial crises.

“It turned out we weren’t ready for the problems they were suffering from. They were way more overwhelming than what we ever could believe,” McElvy said. “We felt uncomfortable because we couldn’t help them.”

The nearly 30-year-old volunteer program fills many gaps in services to the community, including in areas that can offer a little bit of relief to members of the sandwich generation. One way is by providing volunteers to help older adults who do not qualify for some low-income services, but are not able to afford things such as home care on their own, Susan Smith, RSVP’s field coordinator, explained.

“These people in the sandwich generation are then deciding, do I help pay for these services for my mother and father? Do I pay for my granddaughter’s education? Or do I pay for my own mortgage that I still have?” Smith said. “And you know, talk about sandwiched, I mean which way do you turn?”

McElvy said RSVP has about 300 active participants who volunteer with more than 50 organizations and community partners in Beaver and surrounding counties. Volunteers must be at least 55 years old and they can choose from a variety of opportunities that match their interests and skill sets — from helping in museums and skilled nursing homes, to Head Start and mentoring programs.

Participants submit hours to RSVP, and McElvy said they can then be covered for small incidentals through the federally funded program, such as coverage for new glasses if they break a pair while volunteering.

Family caregivers and those who are interested in helping older adults at home can enroll with RSVP, which partners with the Beaver County Office on Aging to offer specialized training and support, McElvy said.

Similar to RSVP, Casey’s legislation — which is expected to be proposed in the coming months — will mobilize volunteers who want to help older adults in their communities, as well as the families that currently shoulder the burden alone, no matter how difficult.

Smith and Casey both said that the determination of the sandwich generation simply goes back to a sense of obligation to their families.

“It’s a value that they have to care for their families no matter what the circumstances are, no matter what the financial implication, no matter what the stress, no matter what the challenges,” Casey said.