Getting Better All the Time Working Together for Continuous Improvement Susan Wehry
Women Share How They Balance Caregiving, Children, and Careers
When parents' health starts failing, daughters are often the ones who oversee care while also working full time and raising families. Here's how they keep everything in motion.
Like many working women today, Liz O'Donnell started getting more involved in helping her parents when she was in her forties. On the weekends, O'Donnell would shop for groceries, mow their lawn, sort their mail, and pay bills. When her parents stopped driving in their early eighties, she took on more responsibilities, like shuttling them to their many doctors' appointments.
She remembers a particular day in 2013 that epitomized the challenges of juggling her parents' needs with the demands of her job as a public relations executive in Boston. She used vacation time to drive an hour and a half to take her mother, who lived on Cape Cod, to the doctor for a checkup. "My mom's doctor started grilling me about what my mother ate and how I needed to call her every day and why I hadn't moved her in with me and my family," remembers 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 I didn't want to be in charge of their caregiving."
Later that night she reconsidered and had an idea: What if she chronicled caring for her parents while working and raising her own kids in Dedham, MA? Already a published writer, O'Donnell knew the power of words to create community and even influence policy—and she thought the topic of unpaid, mostly female caregivers deserved attention. At first the overwhelming demands of caring for her parents—looking for assisted-living facilities, finding specialists to manage their finances, resolving insurance claims, and paying medical bills—kept her too busy to write. It wasn't until after her mother died in October 2014 that O'Donnell had time to share her experiences. In 2015 she started a blog and Facebook page called Working Daughter. That same year her father was diagnosed with Alzheimer's disease and moved to a memory care unit; he eventually moved to a nursing home and died in July 2017.
In 2019, just months after her husband died of pancreatic cancer at age 51, O'Donnell published Working Daughter (Rowman & Littlefield), a book based on her blog posts that describes the constant pull between work, tending to aging parents, and taking care of her own family.
As she anticipated, her writing struck a nerve. Nearly 5,000 women now belong to the Working Daughter Facebook group, which has been especially active during the pandemic, with many working women seeking advice and support. When COVID-19 was spreading through nursing homes, there were many discussions about whether to move parents out of nursing facilities, says O'Donnell. "It has been a heart-wrenching decision for many families, but there is no right answer because every family is different, and many working women just can't juggle the stress of work and full-time caregiving."
One of the newer members is Jennifer Hazen Collins of Akron, OH, who joined this past spring. A single mom of two daughters, Collins was seeking advice from other working women caring for mothers with dementia. "My mom doesn't know I'm her daughter, and she doesn't realize her family is taking care of her, so she's distant and doesn't open up to us. I wasn't ready for that," Collins says. "Being able to chat with and receive support from others in similar situations gets me through a tough day or week."
Connecting with others in online communities or support groups is important for working women, says Neha M. Kramer, MD, who specializes in neurology and palliative care at Rush University Medical Center in Chicago. "We learn from others who can provide valuable resources for caregiving."
O'Donnell confided in her boss about her family situation, and her boss encouraged her to take time off. Over the years O'Donnell would cobble together vacation days and sick leave to use when helping her parents, but she continued working full time. Not all women have such accommodating employers: About 20 percent of female caregivers switch from full- to part-time work, according to the Family Caregiver Alliance. Almost 30 percent pass up job promotions or new assignments, and 22 percent take leaves of absence.
Collins looked for a remote position as a media buyer so she could work from home and be closer to her daughters and mom. "Having that flexibility makes a huge difference," she says.
Jan Loughran, an English teacher at a private school in Hightstown, NJ, moved her mother into her home for the last two years of her life. Loughran had medical leave available but preferred to maintain her teaching schedule. "Colleagues could have covered my classes, but I would have had to tell them what to teach, so I just found it easier to keep doing my job."
While teaching full time and taking care of her mom, Loughran also had her youngest child at home. David, who has muscular dystrophy, was a senior in high school the first year his grandmother moved in with them. "He added a lot of levity and made everyone laugh—especially my mom," Loughran says. Fortunately, both David and his grandmother were fairly self-sufficient, so Loughran and her husband managed. "I came back to the house between classes to check on my mom and help her with lunch, and then David would be home from school in the afternoon."
For women who are eligible for paid vacation or sick leave, taking time off is sometimes the best recourse. "Check your employee handbook or talk to someone in human resources [HR] to see what options are available," says O'Donnell. She also recommends talking to your supervisor to see if the two of you can create a more flexible schedule.
The Family and Medical Leave Act, passed in 1993, allows employees to take unpaid time off to care for spouses, children, and parents with health problems. The law covers people who work at private companies with 50 or more employees and who have worked at least 1,250 hours during the previous 12 months.
"The time off provided by employers in the United States is not as robust as it is in many other countries, but employers sometimes offer other options," says Susan Wehry, MD, a geriatric psychiatrist at the University of New England College of Osteopathic Medicine in Biddeford, ME.
Wehry is a long-distance caregiver for her mother, who lives in Florida. "Last year, we were working remotely at the university, so I arranged with HR to work from Florida for a week," she says. "I've also saved a lot of sick time, which I use to visit my mom and give my sister, who cares for her every day, a break."
Have a Backup
Over Valentine's Day weekend this year, Susan Schachter moved her mother, Leila, who has short-term memory loss, into her home in Maplewood, NJ. Since then, Schachter's husband, who works from home, has helped take care of Leila. He provides companionship, prepares meals, and steps in when Schacter is busy with her job as a nutritionist. "He often keeps my mom company around 4:30 pm while she enjoys a glass of wine with cheese and vegetables," Schachter says.
When Collins travels for work, she asks her sister to watch their mother and Collins' daughters. In the O'Donnell household, Liz was the sole earner. "Before we had kids, my husband and I agreed to have him stay home to allow me to focus on my career and eventually take care of my parents," says O'Donnell, whose children were in high school when their father died.
Loughran's husband suggested years ago that they could move her mother into the downstairs bedroom if necessary. "I knew I would have a lot of help from him to take care of my mom," says Loughran. "He has more flexibility and was always there if I needed him."
Guard Your Own Health
Self-care is essential for caregivers who work. "Breadwinning caregivers feel an extra pressure. They have to stay strong for the people they're caring for, but they also need to continue to provide for their families," says O'Donnell. "I always knew I needed to take care of myself, but at first I didn't know how. There were some days I was operating on four hours of sleep, two bags of Twizzlers, two coffees, and three Diet Cokes."
She eventually replaced the coffee and soda with water and started walking regularly. She kept a pair of sneakers in the trunk of her car and would walk on a track near the hospice center while her mother was napping.
Managing the Working Daughter blog and Facebook page has helped O'Donnell deal with the emotional toll of losing her parents and husband. "Despite the challenges I've faced, the collective spirit and strength of the group has been uplifting," she says. Meditation also has helped reframe her experiences: "When we cast ourselves as heroines instead of victims, it makes a big difference."
Many caregivers know they need to protect their own health, too, but don't necessarily know where to start, says Wehry. She asks her caregiver clients what they like to do for fun and encourages them to spend time on those activities. For Schachter, it's exercise. "Working out really helps me," she says.
Ann Guarnaccia, who moved in with her mom in Princeton, NJ, four years ago, relies on swimming for relief. An administrator at Princeton University, Guarnaccia hired a daytime aide this past year after her mother's dementia progressed, which allows her to swim in the morning. She also hired a weekend aide so she can spend time with her boyfriend at his place. "Having time to myself really boosts me physically and mentally," says Guarnaccia.
Affording Help
This country's infrastructure is not set up to support working moms who are also caregivers, says Sade Dozan, senior development director at Caring Across Generations, a grassroots organization advocating for a different approach to caregiving and accessible care. "From broken government programs and fragmented insurance plans to escalating costs of nursing homes, it's a confusing maze for caregivers to access and afford help."
Getting Medicaid assistance can be complicated, says Roxanne Sorensen, owner and geriatric care manager of Elder Care Solutions of WNY outside Buffalo, NY. "I see a lot of families apply for the wrong type of Medicaid help, which varies from state to state and sometimes county to county." Sorensen recommends hiring a geriatric care manager or elder care lawyer to navigate the process and handle paperwork. "These applications can sometimes take several months, if families even qualify, and most can't wait that long," she says.
Schachter hired an elder care lawyer to apply for Medicaid reimbursement for home health aides. Her mom receives only $2,200 in Social Security a month and doesn't have a lot of savings. "My mom can't afford to go into an assisted-living facility, so we're exploring how she can continue living with us," says Schachter.
Collins has applied for financial aid from the US Department of Veterans Affairs (VA); her mom qualifies for survivor benefits because her husband was a veteran. Collins was told that her mom could qualify for $1,200 a month reimbursement for home health aides. Over the next 12 months, Collins must provide documentation to the VA about her mother's income, medical expenses, and care requirements. Once the application is approved, the aid will be retroactive. "I started working on this in May and encountered more work than I expected, but I'm not giving up. I need help and so does my mom."
Caregiving Made Easier During the Pandemic
It's always been taxing to look after parents and children when also holding a job, but the COVID-19 pandemic has added previously unimaginable layers of stress. "Caregivers have lost loved ones, soldiered through quarantines, scheduled vaccinations, and confronted emotional ups and downs that have strained everyone's resilience," says Liz O'Donnell, author of Working Daughter, a book based on blog posts she wrote while caring for her aging parents, taking care of her children, and working full time.
While the pandemic has tested the patience and strength of all caregivers, especially working women, these five tips from O'Donnell may lessen the strain.
Set personal priorities. "Focus on the things that matter, and let go of everything else," says O'Donnell. "That might mean paying more attention to your kids and helping them in school, staying employed and doing well at work, or spending more time with Mom and Dad at the assisted-living facility. Do a few things well rather than trying to excel at everything."
Work remotely. Not all jobs can be done remotely, but working from home makes it easier to juggle the demands of work, tending to parents, and meeting your own needs and those of your family, says O'Donnell.
Ask for flexibility. Certain jobs don't allow for much leeway, but talk to your manager and co-workers about altering your schedule. "Be transparent about your caregiving responsibilities," advises O'Donnell. "Explore ways to get the job done during times that accommodate your family's needs, whether that's starting earlier or working later."
Embrace technology. Set up your parents with simple-to-use phones such as Grandpad, which has video capabilities, so it's easier to stay in touch and see them. Switch to telemedicine for yourself and your parents so you don't have to take time off to go to the doctor's office, says O'Donnell.
Consider your well-being. It's critical to take care of yourself and make the healthiest choices possible so you can continue to care for loved ones, says O'Donnell. "We know our health is just as much a priority as the health of the people we care for." She suggests using an app such as Insight Timer or Headspace for meditation or one like Daily Burn to get motivated to exercise.
Priorities by Adrien Coquet,Remote Work by Luis Prado, F lexibility by Royyan Wijaya, Tablet by Luis Prado, Meditation by Loritas Medina. All icons from the Noun Project.
Resources for Working Daughters Caring for Aging Parents
- AARP: AARP.org; 888-687-2277
- Caring Across Generations: caringacross.org; 646-360-5815
- Daughterhood: daughterhood.org
- Family Caregiver Alliance: caregiver.org; 800-445-8106
- Working Daughter: workingdaughter.com
Source: https://www.brainandlife.org/articles/how-women-balance-caregiving-children-careers
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