Long-distance caregiving is tough, but moving to be near parents is a big step
By Deb Hipp for Next AvenueSara Tapscott won’t ever forget the day an employee at her aging parents’ assisted living center knocked on their apartment door and told them they’d have to move. Their needs had become too great for the staff to accommodate.
Tapscott’s mom, who was 79 and down to 90 pounds from advanced Parkinson’s disease, was crying and shaking so badly that she nearly fell from her chair. Tapscott’s dad, who was 83 and a retired attorney with Alzheimer’s, attempted to make his case, holding a finger up for each point.
“We’ve always paid our rent on time. You’ve never had a problem from us. We’ve been ideal tenants,” he argued. None of that mattered. They still needed to move.
“It was horrible to see them like that,” says Tapscott, who’d been driving 400 miles roundtrip from Kansas City to Des Moines every few weeks to attend to her parents while working full-time as a nurse. Now she felt obligated to move near them.
“They’d been so good to me and put me through college,” Tapscott says. “How could I leave them there?”
More Care Than One Person Could Give
It is a question faced by many boomers and Gen X’ers with aging parents who live far away: whether to uproot their own life to care for a parent or try to manage things from a distance. Neither choice is easy.
Tapscott’s parents, Mary and Leo, had received their diagnoses 10 years earlier. At first, “it didn’t seem like that big of a deal,” says Tapscott. “They weren’t sick.” Over the years, though, their symptoms worsened.
Ultimately, Leo, who weighed over 200 pounds, needed to be lifted out of bed, chairs and the car. Mary, a former journalist who held a master’s degree, had become incontinent and blurted out inappropriate thoughts unfiltered.
Tapscott’s back already ached from lifting her dad during visits. And her mom had fallen multiple times, breaking both wrists. There was no way that Tapscott and her sister, who also visited, could take care of their parents.
“Every time I visited, I could see how much worse they were becoming,” says Tapscott, who was in her early 50s at the time. She considered moving to Des Moines.
“Don’t you dare,” Mary told her in a rare lucid moment when Tapscott mentioned relocation. Other times, though, Mary and Leo pleaded with her to move and take care of them.
“Being a nurse, it was almost expected that I would take care of their needs,” says Tapscott. “But they needed more care than one person could give them, whether that person was a nurse or not.”
Sara and her sister wound up moving their parents from assisted living to a skilled nursing facility.
Aging Parents and Unrealistic Expectations
Caregivers who provide unpaid care for at least 21 hours per week report the highest stress of all caregiving groups, according to a 2015 report by the National Alliance for Caregiving and AARP. The typical high-hour caregiver provides care “for an average of five years and expects to continue care for another five years,” the report found.
Most people underestimate the time it takes to be a caregiver, says Amanda Lambert, owner of Lambert Care Management.
Even if your parent is in assisted living, your caregiving duties can include:
- Scheduling appointments and coordinating with health care professionals
- Monitoring your parent’s care at the facility or home
- Handling emergency medical calls
- Navigating stacks of insurance and medical bills
You could also be tasked with home maintenance, lawn care and household expenses. Meanwhile, you might still need to hold down a full-time job.
Moving Won’t Heal Old Wounds
Moving may be acceptable if you have a good relationship with your parents and time and resources to spend with your mom and dad — as long as they’re in favor of the move, says Lambert. However, don’t expect to heal a lifetime of conflict by swooping in to save the day.
“Ongoing conflict or issues will only be complicated by the role reversal of the adult child taking care of a parent,” says Lambert. In conflicted relationships, she recommends staying put and hiring a geriatric care manager with good contacts and a neutral view of the situation. That way, you can monitor from afar rather than uproot yourself.
Better Able to Handle a Change
When Amy Goyer was 48, she left her life in Washington, D.C., in 2009 to live in her parent’s Phoenix home and monitor their care in assisted living. She based her decision on her belief that she could handle a big change better than they could. Goyer’s mother had suffered a stroke and her father was declining from Alzheimer’s.
“I kept my home, and I get to travel back to D.C. regularly,” says Goyer, AARP’s family and caregiving expert. “I refer to that as ‘filling my tank.’”
Goyer’s move was by no means easy, though. Her parents eventually moved back into their house, and after her mom died a few years later, Goyer stayed on as the primary caregiver for her dad.
After moving, Goyer soon realized she could not possibly do everything that needed doing.
“I woke up six months after I came out there and I was so overwhelmed, I didn’t want to get out of bed,” she says. That day, Goyer made lists of all the tasks she’d assigned herself and saw that it was impossible to complete them all. So she hired someone to assist with running errands.
“I needed someone to help me, not necessarily my parents,” says Goyer, who misses “that ability to do whatever I want to do when I want to do it.” Still, she’s glad she made the move.
“There are things that are not the way I wish,” says Goyer. “But if I hadn’t moved here, I would have always regretted it.” Goyer still cares for her father, who is now 93.
‘You Give Up Your Whole Self’
Even though Tapscott knows that she didn’t have the resources and physical ability to move and take on full-time caregiving for her parents, she’ll always struggle with her decision.
“If I had a dollar for every tear I shed in guilt, I could have hired 15 caregivers,” says Tapscott.
She and her sister alternated visits to Des Moines until Mary died in 2004. Tapscott even bought a handicapped-accessible van to transport her dad when she visited. In 2006, she moved Leo into a nursing home in Kansas City near her home.
“He only lasted three weeks,” says Tapscott. “There’s so much guilt if you don’t do it. But you also realize you give up your whole self to move, and in the long run, I didn’t think my parents would have wanted that.”
“I went back and forth about it until they died,” says Tapscott. “I still do.”