“If a child has a therapy appointment and Gram has a doctor’s appointment, which is more important?”
This question was posed by Tom Moore to the U.S. Senate Special Committee on Aging during a hearing on the myriad challenges that members of the sandwich generation face. These family caregivers are unique in that they are “sandwiched” between two generations requiring care simultaneously—often their aging parents and their own children. Moore and several other witnesses with intimate knowledge of the struggles of the sandwich generation shared their stories with lawmakers to illustrate how caregiving can affect several generations of a family and how badly additional supportive services and resources are needed.
Caregiving Affects the Whole Family
Moore’s story is a familiar one. His father-in-law passed away in 2004, prompting his mother-in-law, “Gram,” to move into a house close by so he and his wife could look after her. As Alzheimer’s disease and physical decline began to take a toll on Gram, Moore and his wife found themselves helping her daily on top of caring for their four children, three of whom have special needs, and a grandson.
“The physical demands of taking care of two families is tiring. [There are] two yards to cut, drives to shovel, houses to clean, extra meals, extra laundry, extra appointments. The extras are never-ending. The emotional demands and time constraints are harder,” Moore explained to the Special Committee on Aging. He even offered examples of rare nights out with his wife that had been suddenly interrupted by Gram’s personal alert device and discussed the necessity of constantly neglecting his own personal care needs to ensure his loved ones’ requirements were met.
Moore credits a rock-solid support system that helped his family persevere despite their circumstances, but he also expressed frustration over the lack of dependable resources available to seniors, caregivers and their families.
“What services are out there are not widely known and often only discovered when commiserating with someone else in the same situation. Medical professionals tell you to call your insurance [company] to see what is available. Insurance tells you to ask your medical professionals. In the end, you just keep doing what needs done and hoping not too much falls through the cracks,” he testified.
The Sandwich Generation Needs Flexible, Affordable Respite Care
Helping families fill in those cracks is the mission of Sister Barbara Ann Boss, President and CEO of the Elizabeth Seton Center in Pittsburgh, Pennsylvania, which provides intergenerational day care services for both children and aging adults. Not only does Sister Barbara Ann interact with seniors, family caregivers and children regularly through her work at the Seton Center, but she also has her own personal experiences with sandwich generation caregiving. Her mother pulled double duty as a caregiver to a husband with Parkinson’s disease while raising her and her siblings.
In her mind, the term sandwich generation doesn’t just apply to men and women with young children and older parents. Her expanded definition also includes grandparents who are raising their grandchildren and middle-aged parents who are supporting adult children struggling to achieve independence.
“Maybe we need to think outside the box,” she suggested to the Special Committee. “A sandwich has a top, middle and bottom. What if the top is a grandparent taking on the responsibility of their child and grandchild?”
She described the common struggle of trying to find the right care situation for both the oldest and youngest members of a family—one that gives primary caregivers time to work but doesn’t completely deplete the family’s finances. Even when money isn’t a limiting factor, logistical issues like transportation and needing assistance during weekends and on holidays prevent many families from being able to access traditional respite services like local senior centers and adult day care centers.
“Many times we hear, ‘Can Mom/Dad stay at the Center longer today so I can go to my child’s game?’ or, ‘Can Mom/Dad come on Saturday so that we can spend quality time with our children?’ ”
Her questions echo the dilemma that Moore set forth: what can you do when you’re forced to choose between the needs of an elderly loved one and the needs of your own child?
Balancing the Needs of Multiple Generations
Depending on the scenario, being exposed to a caregiving situation from a young age isn’t always a complete disadvantage. Sandwich generation member Judy Mills cared for her father in her home for many years before eventually placing him in an assisted living facility. Transforming her caregiving experiences into teachable moments for her children enabled Mills to put a positive twist on a situation that added a great deal of emotional and financial stress to her family’s lives.
“We hope that we have shown to our sons through role-modeling that charity begins at home,” Mills explained during her statement. “In today’s individualistic culture, we cannot think of a more important lesson to leave to our sons and their future families.”
At the beginning of her family’s journey, Mills’ father contributed to the household in many ways—ferrying her young boys to sports practices and jobs, running errands, and doing household chores. But his health began to decline, and Mills admits that eventually “more of our parenting was directed towards Dad than our sons.” As her sons and father grew older, their individual roles within the family changed. Once their grandfather could no longer drive safely on his own, his grandsons sons assumed the role of taxi driver. Other than doctor’s appointments, though, the older man often remained at home after his keys were taken away.
It wasn’t the growing responsibilities or mounting utility bills that convinced Mills and her husband, Thom, to consider senior living. It was the fact that they simply couldn’t care for her father the way he needed to be cared for. “The biggest blessing for Thom and I is that we realized that moving Dad out of our home was the best arrangement for him,” she admitted to the panel of senators. Mills and her husband still visit her father regularly, pay his bills, take him to doctor’s appointments and manage his affairs, but he now has what they couldn’t provide in their home—the opportunity to socialize with his peers and ongoing supervision to ensure his safety.
Mills’ optimistic approach doesn’t stem from denial or a lack of understanding about the realities of her situation. “The dream of a carefree retirement, for us, seems very distant,” she acknowledged. Throughout their journey, she says that teamwork has been their greatest asset—the one thing that has enabled her family to approach caregiving and multigenerational living with hope. “We have learned a few ways to help other caregivers like ourselves to balance more than one generation of family at a time. Some of these ways include pulling together as an extended family to help with care and morale, attending caregiver support groups, sharing with and asking for help from our church family, and picking up the slack for each other when we have reached our breaking point.”
The Call for Increased Supportive Services for Family Caregivers
Two expert witnesses also testified at the hearing: Charles Reynolds III, MD, Director of the Aging Institute at the University of Pittsburgh, School of Medicine, and Mildred Morrison, Administrator at the Allegheny County Department of Human Services, Area Agency on Aging.
Morrison and Dr. Reynolds outlined common issues faced by the sandwich generation and proposed the following set of policies and practices that could potentially alleviate some of the financial and emotional burden placed on these individuals.
- Disseminate information regarding who caregivers are and what risks and responsibilities come with this role.
- Motivate doctors and health care agencies to speak to their patients about how their lives are being impacted by their caregiving role(s) and intervene early on to emphasize the importance of engaging in self-care while caring for others.
- Increase public and private funding for training opportunities for informal family caregivers.
- Place more focus on developing technologies to help family caregivers look after their loved ones (e.g. remote monitoring and health tracking technologies).
- Develop more flexible and accessible approaches to achieving Medicaid eligibility for assistance with caregiving.
According to a 2015 report conducted by the Pew Research Center, approximately 23 percent of Americans have one or two parents age 65 or older and are either raising a young child or have provided financial assistance to a grown child in the preceding 12 months. The burden on families is projected to increase as the baby boomer generation continues to age rapidly, and it’s clear that the implementation of the interventions listed above cannot come soon enough.
“Be it measures great or small, as a country we must face the often labeled ‘aging tsunami’ so that family caregivers do not suffer financial hardship along with the other burdens of caring for loved ones,” Morrison urged the Special Committee.
Locating Resources for Family Caregivers
As Tom Moore pointed out in his testimony, the supportive services that are available to family caregivers are typically difficult to learn about and apply for. If you or someone you know could use some practical guidance, financial support or respite care, start by investigating federal, state and local programs for seniors and caregivers. BenefitsCheckUp.org is an online service provided by the National Council on Aging that enables seniors and their caregivers to search a database of more than 2,500 programs for benefits that they may qualify for.
Area Agencies on Aging (AAAs) can also help families sift through available resources and benefit programs and provide recommendations for specific elder care situations. Find your nearest office using the AgingCare.com Area Agency on Aging Directory.
In-person and online support groups are another vital source of social interaction and information on caregiving and elder care resources. AAAs can typically provide referrals to local caregiver support meetings, and online forums are an excellent way of receiving insights and answers from fellow caregivers and elder care experts in the comfort of your own home.