Next Avenue Logo
Advertisement

How to Stay Close While Caregiving from a Distance

Being a long-distance caregiver is a challenging role for millions of Americans, but there are resources to help manage the logistics and reduce the burden and guilt

By Paul Wynn

Raising a young family, working full time and caring for aging parents creates a constant juggling act. The juggling becomes much more complex when parents or loved ones don't live nearby. Liz O'Donnell and her family lived in the Boston suburbs, about an hour and a half from her parents on Cape Cod. O'Donnell would drive out to her parents at least twice a month to help them go food shopping, check their mail and pay their bills.

A woman on the phone dealing with a financial issue. Next Avenue
Long-distance caregivers can have several responsibilities, including overseeing health care needs and financial issues and coordinating care for their loved one.  |  Credit: Getty

When her parents stopped driving in their early eighties, she took on more responsibilities, like shuttling them to their many doctors' appointments, requiring even more driving back and forth. She recalls one specific day when the challenges of juggling work, family and her responsibilities as a long-distance caregiver became overwhelming.

"I knew my mom and dad needed more care, and I wanted to help, but being their caregiver was not what I had planned for."

So she took a day off from her job as a public relations executive to take her mom to a doctor's appointment. "My mom's doctor started grilling me about what my mother ate and how I needed to call her every day and why hadn't I moved her in with me and my family," recalls O'Donnell.

"I left the appointment feeling so ashamed and defeated. I knew my mom and dad needed more care, and I wanted to help, but being their caregiver was not what I had planned for," she says.

Like O'Donnell, you are considered a long-distance caregiver if you live more than an hour away from your loved one.

According to a joint report by the National Alliance for Caregiving and AARP, there are an estimated 66 million caregivers in the United States. About 15% live an hour or more away from their loved ones, with a large number who live many miles away and need to fly to see their family member.

According to a joint report by the National Alliance for Caregiving and AARP, there are an estimated 66 million caregivers in the United States.

Balancing Caregiving with Family Life

In many instances, long-distance caregivers care for mom or dad or other loved ones and also balance full-time employment and their own children. 

Due to the distance and other life responsibilities, long-distance caregivers may be unable to provide direct, everyday care, but are responsible for arranging much-needed services, says Gary Barg, founder and editor of caregiver.com and the author of "The Fearless Caregiver."

He says, "The physical and emotional stresses of long-distance caregivers can be challenging at times."

Advertisement

Caring from Afar

What exactly do long-distance caregivers do? They can have several responsibilities, including overseeing health care needs and financial issues and coordinating care with health aides or geriatric care managers. For families with loved ones living out of state with no family nearby, geriatric care managers can provide oversight and care.

"The physical and emotional stresses of long-distance caregivers can be challenging at times."

Geriatric care managers have permission to speak to doctors and take a loved one to medical appointments.

They are often nurses or social workers and are typically employed by family members and paid privately to oversee care needs. Learn more about geriatric care managers by contacting Visiting Nurse Associations of America and the Aging Life Care Association.

Judy Uzzi is a geriatric care manager with Morselife Health System in West Palm Beach, Florida, who works with families who are out of state and have older parents living in Florida. In her role, she is on the front lines observing how loved ones are doing. 

"I communicate with family members over the phone and through email on a daily basis to keep them updated about how their parents or family members are doing," says Uzzi. "After a doctor's visit, I always provide an update to the family."

Making Tough Decisions

Living independently becomes ever more difficult as loved ones age or suffer from poor health. Caregivers often need help to determine the best and safest options. 

For example, do they let their mom and dad age in place in their home that likely is not set up with a first-floor bedroom and bathroom and safety features? What happens when mom or dad can't live by themselves anymore? Do they look for an assisted living facility to manage their daily needs?

And what about moving the parents closer to family members so they can be watched closely and have someone nearby for emergencies? Many long-distance caregivers know firsthand that loved ones often don't want to move from their homes and communities where they have built many memories and personal connections.

"There's a strong and natural tendency to want loved ones nearby as they get older," says Barg. He explains that there are a number of questions that swirl through caregivers' minds. "How do you know if Mom is eating well? Is Dad taking his medications? What happens if my parents don't want to move into an assisted living facility? Are they going to their doctor appointments, and what did they find out? How much longer should they drive?" 

Barg adds that many families struggle with these questions – which become even more pronounced when there are many miles of separation.

After O'Donnell's father was diagnosed with dementia, she moved him into a memory care unit a few minutes from her mom to reduce the driving back and forth to his home. "Being close to friends didn't mean as much to my dad at that point so he was okay moving away from his home," says O'Donnell.

Cathy Reed, a retired nurse and paramedic of Herculaneum, Missouri, took care of her father for more than seven months after her stepmom passed away. "I wanted to move my dad closer to me, but he didn't want to leave the house he lived in," says Reed. "I arranged to have friends and neighbors check on him when I couldn't be there myself."

Managing Guilt

One of the top challenges of being a long-distance caregiver is dealing with the guilt of not living close by. Day-to-day caregiving is challenging, but people underestimate how caring from a distance can be emotion-laden, says Barg, who was a long-distance caregiver to his grandmother, who had Alzheimer's disease.

Being far away has its own set of problems because caregivers worry about what happens in emergencies when they can't get there right away, and that's where the guilt arises.

It is essential for caregivers to remember that they are not alone.

Reed can relate to those feelings of guilt when she was not with her father, who passed away in April 2023. "It was impossible to be there all the time, but when I wasn't there I felt so guilty and would try and compensate for it when I would see him next."

As a result, caregivers ignore their own personal and health needs – which can be detrimental to their own physical and emotional well-being. For example, in one survey of caregivers, one-third admitted that managing their own stress is something they wanted more help with, and a similar number said they wanted more time to themselves.

It is essential for caregivers to remember that they are not alone, explains Barg. "I know firsthand through my own personal experience that caregivers do not take care of themselves, and that can lead to burnout, anger and frustration."

Barg adds that it can be rewarding for caregivers to share their experiences with others through support groups. Nowadays, support groups are available not only in community settings, but many are available online where caregivers support one another and help each other.

Balancing Your Needs

Many long-distance caregivers also need help managing caregiving demands in their full- or part-time positions. This generally means taking time off from work to spend more time with their family members. Caregivers inevitably miss work to help with doctor visits or meet with paid care providers.

Adjusting work schedules, such as coming in late, leaving early, telecommuting and missing work days, is commonplace to accommodate caregiving responsibilities. In one survey, half of all respondents reported making major adjustments at work, with 44% saying they rearranged their work schedule. A small percentage of caregivers switch from full-time to part-time to make more time for caregiving, but many turn down work travel.

Under the Family and Medical Leave Act (FMLA), eligible employees can take unpaid, job-protected leave and maintain their health insurance coverage. Taking care of a parent is considered a qualified reason. The 12 weeks of unpaid leave do not have to be consecutive but need to be taken within 12 months. Companies with fewer than 50 employees are not required to provide unpaid leave, and employees have to work a certain number of hours to qualify.

"Trying to handle work and caregiving responsibilities was a constant juggling act, but I was open about my situation with my boss and that made being a long-distance caregiver more manageable," says O'Donnell.

Paul Wynn
Paul Wynn has contributed feature and news stories to more than 65 publications throughout his career. He is a graduate of Ithaca College's Park School of Communications. He lives with his family in New York's scenic Hudson Valley. Read More
Advertisement
Next Avenue LogoMeeting the needs and unleashing the potential of older Americans through media
©2024 Next AvenuePrivacy PolicyTerms of Use
A nonprofit journalism website produced by:
TPT Logo