by Rachel Abbey McCafferty, Crain's Cleveland
It’s a story that plays out year after year, in home after home.
Older adults need more and more help. Maybe they are struggling physically, maybe mentally, maybe financially; maybe all of them. Their children step in to help, but it’s not an easy job and it’s not one they trained for.
Many of these caregivers are juggling a variety of roles – they already are parents, employees, spouses.
Almost a quarter of U.S. adults found themselves in the so-called sandwich generation, helping care for both their parents and their children, according to a Pew Research Center 2021 survey. Adults in this category have at least one parent who is 65 or older and are caring for a minor child or helping an adult child financially.
Caregivers in the sandwich generation often face “decision fatigue,” said Lisa Weitzman, director of strategic partnerships at Cleveland-based Benjamin Rose: “How many people can I carry at the same time?” It leads to a sense of always being on call, she said; if the caregiver’s parent is OK at the moment, their child might need something. Or they may realize they’ve been neglecting their marriage, or their own mental health, or their job.
“They’ve become, in essence, the emotional first responder for three generations at the same time,” Weitzman said. “And I think, so often, when we think about sandwich generation or panini generation caregiving, we think about that people are pressed for time, but I think it’s also that they’re pressed by competing responsibilities. They’re pressed by competing emotional loyalties.”
It’s a situation that is affecting more and more Ohioans as the population ages, but there are agencies and organizations that dedicate efforts and resources to support them. Connecting them to that assistance can be tricky.
Supporting both parents and children
When Cassandra Valentini, chief of community development and public relations for Direction Home of Eastern Ohio, started with the organization about 15 years ago, she noticed most of the caregivers the group was working with were an aging spouse caring for a partner. Today, she sees an increasing number of adult children caring for their parents while also caring for their own children and working.
“They have all of these other things on their plate and they want to make sure that Mom or Dad or Grandma or Grandpa is able to age in a dignified manner,” she said.
Direction Home of Eastern Ohio is the area agency on aging for the Mahoning Valley region, covering Ashtabula, Columbiana, Mahoning and Trumbull counties. The organization serves as an umbrella organization, connecting federal, state and local resources designed to support older adults, people with disabilities and their caregivers to the people who need them.
“Our goal as an organization is really to be a one-stop shop for those people who are aging and disabled and need help navigating the system, because the reality is, it’s not easy,” Valentini said.
To that end, the organization takes about 12,000 calls a year from the community. The employees working the phones are the “first line of defense,” she said, and they’re well-versed in the different services and programs available.
One of the support programs Direction Home of Eastern Ohio offers is for older adults, 55+, balancing their own needs with that of a minor child they’re raising: typically, a grandparent raising grandchildren. The organization started the kinship program about five years ago, Valentini said, seeing the need but not anticipating its scope. Already, hundreds of families have been helped.
Most of the caregivers in Direction Home’s kinship program face chronic health issues, said Christy Boone, director of special projects; they’re older, single women, often on a fixed income.
“These caregivers are cost-burdened,” she said.
Direction Home aims to “fill in the gaps,” said Boone. That might look like something tangible, like providing a bed and bedding to a caregiver who didn’t anticipate housing their grandchildren full-time or helping a child in the program get an instrument to pursue a new activity.
Valentini said Direction Home of Eastern Ohio also strives to offer families in its kinship support program “respite” through services like its summer camps.
Missing middle support
The kinship program essentially supports the members of the sandwich generation who are missing the middle – that adult child – for whatever reason: incarceration, substance abuse or death. Beyond the tangible challenges of caring for children on, often, a fixed income, are the emotional ones: grief and trauma.
But even in the best situations, caregiving – particularly a dual caregiving role – can come with a variety of stressors: the costs of elder care and childcare, navigating childcare set-ups as grandparents age, watching elderly parents lose some of the abilities, like driving, they had before.
Sometimes, a caregiver may be able to manage the basics and take care of others, said Jason Joyce, CEO of the Alcohol, Drug Addiction and Mental Health Services Board of Cuyahoga County, but their emotional pain goes unaddressed. People who are suffering from burnout or “compassion fatigue” may find themselves shorter tempered or less empathetic, he said. And caregivers often carry a lot of guilt, Joyce said, feeling like they’re letting down their children, their parents or both.
“When it comes to that age group, this generation, having to take care of your children while also taking care of your aging parents, it’s not just a family logistics issue,” Joyce said. “It’s a mental health issue. Caregiving, while it’s an act of love, it does not make somebody immune to burnout and mental health issues.”
Building resilience as a skill to combat burnout is important, said Katie Jenkins, executive director of NAMI of Greater Cleveland. It has to be more consistent than taking a Friday off after a tough week. It might look like taking intentional moments of pause throughout the day or implementing breathing practices, or like creating stronger boundaries between different tasks.
NAMI of Greater Cleveland has been seeing an increase in the number of people it’s serving. Often, she said, it’s people who aren’t yet experiencing a crisis, but want to get support before they reach that point.
“People are being proactive,” Jenkins said.
The National Alliance on Mental Illness was started by caregivers who were seeking help for themselves and for their children, Jenkins said. Someone who is taking care of an individual with some sort of mental illness can spend up to 32 hours a week on that work, outside any full-time job, she said. NAMI aims to provide support and education for caregivers, teaching them how to set boundaries and care for themselves, as well.
“As we know, if you are not OK, you can’t take care of other people,” Jenkins said.
Complicated care
A person can be a great “logistics manager,” said Weitzman of Benjamin Rose, but caregiving is about more than that. They need to navigate the emotional, too: the grief, the hope, the uncertainty. Caring for an aging parent is different than caring for a young child, she said. Parenting a child is about preparing them for the future and helping them to become more independent. Caring for a parent isn’t parenting. It’s more about working together with them, Weitzman said.
The nonprofit Benjamin Rose, which has been in Cleveland for nearly 120 years, is focused on supporting older adults and those who care about – and for – them. The group offers a full slate of resources, from housing access to companionship programs to behavioral health services. And there’s a family care navigation program for caregivers called WeCare to help them sort through resources in the community, as well as take good care of themselves.
Part of the goal of the WeCare program is to help caregivers feel more comfortable and competent in that caregiving role, Weitzman said.
“We know that so many people come into this caregiving role – they have no training, they have no education, they have no time,” she said. “Oftentimes, they don’t even have any desire. Right? Maybe they’re supposed to care for someone who never cared for them. Like they’re supposed to drop all and provide care. So, how do we help them make that more manageable? To make it more doable.”
One way to help is to provide information, Weitzman said. That could look like information about a particular disease progression or about how to access home care services. The needs will vary, but the goal is to give the caregiver what they feel they need to deliver that care well.
And part of that is making sure the caregiver themself is taken care of. That means helping them build a support team at home of family and friends and showing them where they can accept help; ideally, the health care system builds a team around the patient, Weitzman said, but the caregiver needs a team, too.
A lot of times, people don’t identify as a caregiver, Weitzman said – they identify by their family role. That framing can turn it from work to what feels like a moral obligation. And that can make it harder for people to reach out for help.
Caregivers also need space to share the tough parts of caregiving. Weitzman said the role can come with anger, with guilt and with grief, as the person begins to mourn their loved one, even while they’re still alive. It’s important for caregivers to open up about the support they need, if they want to continue to care for others.
“You don’t have to be a hero,” Weitzman said. “You don’t have to be a martyr. This is really hard work.”
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