"If a child has a therapy appointment and gram has a doctor appointment, which is more important?"
This question was posed by a man named Tom Moore during a recent U.S. Senate Special Committee on Aging hearing. Moore, and two fellow caregivers with intimate knowledge of the struggles facing the sandwich generation—adults caring for aging parents and their own children, simultaneously—shared their stories with lawmakers, in the hopes of highlighting some of the challenges facing millions of Americans.
When mom moves in down the road
Moore's story is a familiar one. His father passed away a decade ago, forcing his mother with Alzheimer's to move to a house on his street so the family could look after her. As the disease began to degrade his mother's mental abilities, Moore and his wife found themselves helping her on a daily basis, on top of caring for their four children, three of whom have special needs.
"The physical demands of taking care of two families is tiring. 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 laments. He offers examples of rare nights out with his wife that were suddenly interrupted by gram's safety alarm, and discusses the necessity of constantly burying his own personal care needs beneath the weight of his loved ones' requirements.
A rock-solid support system helped Moore and his family persevere, in spite of their circumstances. But he expresses frustration over the lack of dependable resources for caregivers and their families, saying:
"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 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."
The need for flexible respite care
Helping families fill in those cracks is the mission of Sister Barbara Ann Boss, whose own mother pulled double-duty as a caregiver to a husband with Parkinson's as well as Barbara Ann and her siblings.
Sister Barbara Ann currently serves as CEO of the Elizabeth Seton Center, which provides day care services for both children and aging adults. In her mind, the sandwich generation definition doesn't just apply to men and women with young children and older parents. It also encompasses the grandmother in her early 60s who has just been given custody of her infant grandson and needs to hold down a 9:00-5:00 job, or risk going on welfare.
"Maybe we need to think outside the box," she says. "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 describes the struggle of trying to find the right care situation for a family member—one that gives the caregiver time to work but doesn't completely deplete the family's finances. Even when money isn't a limiting factor, logistical issues such as transportation and needing assistance during weekends and holidays prevent many families from being able to access the respite services of local 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 some on Saturday so that we can spend quality time with our children?'"
Her questions echo the plight outlined by Moore—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?
An unenviable teachable moment
Depending on the scenario, being exposed to a caregiving situation from a young age isn't always a complete negative for the offspring of the family caregiver.
"We hope that we have shown to our sons through role-modeling that charity begins at home," says sandwich generation caregiver Judy Mills, 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."
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.
In the beginning, her father helped out in many ways—ferrying her young boys to practice and jobs, running errands and doing household chores. But his health began to decline and "more of our parenting was directing towards Dad than our sons," says Mills. As her sons grew, they found themselves assuming the role of taxi drivers for their grandfather, once he could no longer drive safely on his own. Other than doctor's appointments, though, the older man often remained at home, eating and watching sports, after the family took his keys away.
But it wasn't the extra responsibilities or mounting utility bills that convinced Mills and her husband to move her father out. It was the fact that they simply couldn't care for him 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 admits. Mills and her husband still visit her father regularly, pay his bills, take him to doctor's appointments and manage his affairs, but the older man now has what his family couldn't provide at home—the opportunity to socialize with his peers and ongoing supervision to ensure his safety.
Mills' optimistic approach doesn't come from a lack of understanding of the realities of her situation. "The dream of a carefree retirement, for us, seems very distant," she says. But she does share the strategies that have enabled her and her family to approach the caregiving role with hopefulness: "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."
Seeking more effective solutions for the sandwiched
Two expert witnesses also testified at the hearing—Charles Reynolds III, M.D., 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.
The duo outlined common issues of the sandwich generation and proposed a set of policies and practices that could potentially alleviate some of the financial and emotional stress of these individuals:
Motivate doctors to speak to their patients about how their lives are being impacted by their caregiving role(s), and emphasize the importance of engaging in self-care while caring for others.
Increase public and private funding for training opportunities for 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 accessible approaches to achieving Medicaid assistance for caregiving.
With about one-in-seven middle-aged adults currently meeting the criteria for inclusion in the sandwich generation, according to the Pew Research Center, it's clear that the implementation of these interventions cannot come soon enough.
As Morrison says, "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."