In the last six weeks, Georgia Nixon has slept almost every night in a Charlotte, N.C., hospital room with her chronically ill 22-year-old daughter.
During the day, she also makes sure her parents, both in their 80s, get the care they need for multiple health problems.
Nixon doesn’t complain. She loves her big Greek family and wants to take care of it. But like other family caregivers, she makes sacrifices to do it.
In 2011, she took a leave of absence from her job as director of the preschool at Holy Trinity Greek Orthodox Cathedral in Charlotte. She intended to be gone for a year, but it’s getting close to two.
In April, her husband, Speros, got laid off from his job at Snyder’s-Lance Inc. While he searches for a new job, they’re living on his severance and paying $1,500 a month for an 18-month extension of his health insurance.
Nixon, 51, is among the growing number of women spending their middle age as unpaid family caregivers.
In any given year, more than 65 million people, 29 percent of the U.S. population, provide care for a chronically ill, disabled or aging family member or friend, according to the National Alliance for Caregivers. About 66 percent of those caregivers are women.
And women who are family caregivers are 2.5 times more likely to live in poverty than noncaregivers, according to a study done by Rice University researchers.
“Traditionally, it has always been and continues to be perceived as a woman’s job," said Roberta Farnum, owner of Home Instead Senior Care in Mecklenburg County, N.C. “It’s going to usually fall on the daughter, often the oldest daughter.
“We see often where women will alter their life in many ways before a son will," Farnum said. “If they are trying to hold onto a job, they often get sick. They’re trying to do too much."
Caregiving is not only emotionally and physically exhausting. It can also harm the caregiver’s own prospects for aging well.
A 2011 study found that nearly 10 million employed adults 50 or older are caring for parents when they should also be saving for their own retirement. For an individual woman, the estimated lost wages and Social Security benefits equal $324,000, according to the study co-sponsored by the National Alliance for Caregivers.
Nixon said she didn’t give a thought to the impact on Social Security benefits when she took her leave of absence.
“It’s just the way it is," she said. “And you go on."
‘I needed roller skates’
Nixon’s parents, Bill and Helen Holmes, were living happily on their own in Cape Coral, Fla., until the summer of 2011. That’s when their adult children began noticing their parents’ declining health.
They agreed to move to Charlotte to be closer to Nixon, the middle of three children.
On the first day of a trial visit at Atria Merrywood, a senior community, Bill Holmes fell and hit his head, resulting in a blood clot in his brain.
He ended up in Presbyterian Hospital, where the Nixons’ middle daughter, Christina, was being treated for a complication of gastroparesis, a condition that prevents her stomach from emptying properly.
“I was running back and forth trying to stay with them both all night," Nixon recalled. “One of the doctors told me I needed roller skates."
The Holmeses decided to stay at Atria Merrywood, where they have an apartment in the independent-living section. They get assistance with personal care and housekeeping from a Home Instead aide who visits about five hours a day, six days a week. It’s paid for, in part, by long-term care insurance.
But Nixon still manages their medicines, pays their bills, checks on them several times a day by phone and visits at least once a week.
“It’s great to have them here," she said. “It’s also a lot of work."
187 days in the hospital
Last week, the family gathered at Presbyterian, where Christina is again a patient. She’s been there this time for six weeks, treated for a sepsis infection related to her stomach disorder.
It is just one of her health problems. Christina was born with brittle bone disease, a genetic disorder characterized by fragile bones that break easily. She has broken more than 60 bones, and she uses a wheelchair to get around.
Four years ago, as a freshman in college, Christina got an infection that damaged her vagus nerve, which controls the stomach muscles. As a result, she can’t eat solid food and gets all her nutrition intravenously. Last year, she was in the hospital 187 days.
Although Nixon trusts her daughter’s doctors and nurses — and often gets hugs from them in the halls — she rarely leaves her daughter’s side. It’s partly because Nixon is the only person allowed to give Christina a twice-a-day treatment to prevent her central intravenous line from becoming infected. The treatments are strictly timed, at midnight and again at 9 a.m.
“I don’t sleep but four hours or five hours a night," Nixon said.
Like caring for children
On the day when her parents came to visit at the hospital, Nixon was tired but she still hovered over them tenderly.
She held onto her father’s hand as he pushed his three-wheeled walker slowly down the hall. She used her arms and legs to help him turn to take a seat or lift him up to standing.
Retired after 38 years with the U.S. Agency for International Development, Bill Holmes has Parkinson’s disease and macular degeneration. He speaks quietly and doesn’t say much. But he perked up when someone mentioned gyros, the Greek sandwich he loves — but never with lettuce, which is how it’s being served in the hospital cafeteria.
Helen Holmes, stronger and healthier than her husband, drove them to the hospital. She recently passed the test for her North Carolina driver’s license, but still has to get an eye exam to complete the process.
Both parents have trouble hearing, so Nixon often repeats her questions, louder and louder.
Her mother also is “forgetful," Nixon said. “We write everything down so she won’t forget, and then she loses the paper."
Sometimes, Nixon finds pills of different shapes and sizes stashed in her parents’ medicine chest. When confronted, her mother admits they’ve forgotten to take some of the medicines Nixon has carefully doled out in plastic day-of-the-week containers.
“It’s like (taking care of) kids," Nixon said. “You have to laugh. You don’t want to cry."
‘She’s the best’
Balancing care for both daughter and parents gets complicated.
That day at Presbyterian, just as Nixon and her husband got her parents to the first-floor cafeteria, Nixon’s cellphone rang. It was Christina, whom they’d just left on the sixth floor, calling to say the doctor had arrived.
Nixon returned to her daughter while Speros ordered gyros — without lettuce — for her parents. It was after 3 p.m. before Nixon ate her own lunch.
Such interruptions are not unusual.
A year ago, the Nixons left for a rare vacation, a five-day cruise to celebrate their 25th wedding anniversary. The next day, they got word that friends had taken Christina to the hospital, where she was in intensive care.
The Nixons flew right back.
Unlike many caregivers, whose efforts go unappreciated, Nixon’s parents praise their daughter’s care.
“I don’t know how she does it sometimes," Helen Holmes said.
“She’s the best," added Bill Holmes.
Nixon acts embarrassed by the attention.
“I want to do this," she said. “My parents were there for me all my life. And I always told them I’d be there. And of course, I’d do anything for my daughter.
“Would I like to go back to work? Yes. But do I enjoy having my parents here? That’s a ‘yes’ too ... I won’t have any regrets."