When it comes to health care, there are so many players: surgeons, clinicians, researchers, nurses, pharmacists and everybody in between.
We all know some get respect (and handsome paychecks), while others are unappreciated and underpaid.
But there’s another role that I think sacrifice the most and are recognized the least: caregivers.
Those unpaid loved ones who often drop everything in life — leaving their jobs, communities and personal passions — to bear the daily and often nightly burdens of caring for a severely disabled child or parent or spouse, often during the challenging last months or years of life.
And there are a lot of caregivers out there.
According to AARP, about 40 million Americans care for family members, comprising an unpaid workforce worth about $470 billion a year. (As worrisome as that is mind-blowing, the number of caregivers for each person 80 older is estimated to decline from seven in 2010 to four in 2030.)
This year, I’ve witnessed several from a distance demonstrating pure, enduring, selfless love. Over the years, I’ve encountered many more in the course of reporting stories in this section of the newspaper. The ones that have impressed me most are those caring for a spouse or parent with those relatively long, degenerative diseases, such as Alzheimer’s and ALS.
So I was ready to listen when I picked up the phone a couple of weeks ago to answer a random call from Jackie Morfesis, who was compelled to “advocate for others who may also travel this most heartbreaking but loving journey.”
The 53-year-old poured her heart out to me as she talked about caring for her mother, Lucia Manos Morfesis, who was diagnosed with Stage 4 brain cancer in early June and died in late August at age 80.
Morfesis compared the experience to having someone tell her daily that a tornado was coming.
“Every day you wake up and don’t know what’s coming: a new infection, another drop in mental capacity … every day you’re going into unknown territory,” says Morfesis, adding that caregivers end up playing an array of roles: advocate, nurse, aid, lawyer, guardian, negotiator.
“You are 10 people who do 10 different things every day. There’s no down time unless I took mom to respite (short-term) care.”
Her only preparation for the duty was filling in a back-up to her mother for her father, Peter Morfesis, in the months leading up to his death from complications of diabetes and heart failure in 2011.
When he got ill, Morfesis left a job of 15 years at Rutgers University-Camden, her church and a thriving Greek-American community in the ethnically diverse Delaware Valley in Pennsylvania. She adds, “I had a beautiful life.”
Leaving that and coming to Charleston has taken a financial toll on her. She’s worked part-time at a wellness center, now works at College of Charleston and signed up to be a driver for Uber, but she hopes to find full-time work soon.
But she had a message to caregivers, notably to speak up and seek help when needed. She found the most useful help, as many modern day caregivers do, online with blogs where she was able to get advice and support others going through similar experiences.
“People make assumptions that the one who steps up to be the caregiver is the strong one and assume that you don’t need the support,” says Morfesis, noting that she, like many caregivers, often suffered from feelings of guilt during weak moments.
While Morfesis wants to join in supporting caregivers, she also stressed that she loved her parents, who were married for more than 50 years.
“As challenging as it (caregiving) was, it was an honor and a blessing and I wouldn’t have changed a thing,” she says.
As overlooked as they have been for decades, caregivers may get their due in the coming weeks during National Family Caregivers Month.
Advocacy groups, such as the Caregivers Action Network, will be offering advice to caregivers, such as urging them not to skip regularly scheduled preventive care for themselves, like as getting flu shots or mammograms, and getting regular physical activity and plenty of sleep.
Meanwhile, caregivers may be getting more attention on the federal and state level in coming years.
In March, members of Congress formed the Assisting Caregivers Today (ACT) caucus and reintroduced a bill to create the national Care Corps program, modeled after the Peace Corps, in which volunteers would help family caregivers.
And that’s not all.
Rep. Nita Lowey, D-N.Y., introduced a bill that would give caregivers a Social Security earnings credit when they take unpaid time off from their jobs to provide care. And the bipartisan Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, introduced in July, would mandate the development of a national strategy to support family caregivers.
Meanwhile, AARP has made getting the passage of the Caregiver Advise, Record, Enable (CARE) Act in state legislatures its top priority this year. CARE would require hospitals to adequately inform and, if necessary, train family members who care for family members coming out of the hospital. So far, 18 states have passed it.
“For the first time, people are saying, ‘This (help for caregivers) is something Congress should focus on,” AARP Executive Vice President Nancy LeaMond said to The Washington Post in July.
Reach David Quick at 937-5516.