Two decades ago, Shirley Loflin's spell-checker wouldn't accept "caregiver" as one word, but she certainly was one.
She tended to her ailing husband and father by herself until she said she finally realized the burden was too much and she needed help.
"I would have given anything to have spoken with someone who had been there and dealt with what I was faced with, but there was nowhere to turn," she said. "Through the years, I have watched things slowly change. Agencies devoted to helping the caregiver are now available, and studies are being done on how to help the ones who really need it, and a myriad of books have been written on coping with the debilitating diseases that take such a toll on our minds and bodies. Many people do not realize that help is available, or they're too proud to seek it out. I'm sad to say I was one of those people."
She found that help through the Rosalynn Carter Institute for Caregiving, established in 1987 on the campus of Georgia Southwestern University in Americus. Now, as a resident of Spring Harbor, a continuing care retirement community in Columbus, Loflin urges other caregivers to do what's best for their loved ones by also doing what's best for themselves.
In an October 2010 report, "Averting the Caregiving Crisis: Why We Must Act Now," the institute reported:
An estimated 65.7 million Americans have provided unpaid assistance to an adult or child with functional or cognitive limitations.
They comprise 80-90 percent of the long-term care provided at home to more than 9 million elderly or disabled individuals.
A typical caregiver provides an average of 21 hours of free care per week, amounting to an estimated $375 billion worth of services annually.
Approximately 6 million adults over age 65 need daily assistance, and that number is expected to double by 2030.
"You will either be a caretaker or someone will be taking care of you," Loflin said, "and neither job is easy."
Loflin, 79, serves on the institute's board of directors. She spoke last month to Spring Harbor residents about her caregiving journey. Here are highlights:
Loflin first became a caregiver via long distance. Her ailing mother lived in Charlotte, N.C., while she was in Americus.
"You want to be there, but you can't because you're needed at home," she said. "There are so many guilty feelings that you have to deal with. There's one crisis after another, and it's a constant back and forth, guilty feelings and helplessness, but long-distance caregiving can be done. It can be done with the help of agencies, professional caregivers and a vigilant keeping-in-touch or constant keeping-in-touch."
After her mother died, she said, her father moved in "with my sweet, understanding husband and me, and we managed well for almost a year, until what I refer to as my 'nightmare before Christmas.'"
In December 1993, her husband, Geddie, had a massive stroke. At 61, he was paralyzed on his right side and unable to speak.
"So within minutes," she said, "my strong, reliable partner had
become a complete invalid, and needless to say, I was panic stricken. I realized I was the sole caregiver for the three of us, and, frankly, I was scared to death."
She also had her own ailments after two back surgeries and recovering from a hip injury. But watching her husband dedicate himself to his therapy sessions at the rehabilitation center in Albany inspired Loflin.
"Geddie worked extremely hard, so much so that he actually gave me courage to do what I had to do," she said. "I learned from him. His therapist said she had never seen anyone work so diligently and be so determined to regain a bit of the person he was before."
After months of training, Geddie still spent most of his time in a wheelchair, but learned how to walk again, aided by a cane and a brace.
"We became a team," she said, "working together to make a better life, an enjoyable one, with love and respect for one another."
'Everything had changed'
That spring, Geddie was well enough to return home "to launch our new life, because that's what it was: Everything had changed," Loflin said. "I learned to deal with insurance companies, the medical community and to even be the family driver and pump gas. Can you believe I had never pumped my own gas before, because he always did it for me?"
Complicating matters, she also had to care for her father.
"Dealing with two men in one household is beyond belief on a good day, much less when both are sickly and needing care," she said. " Every day presented something new to deal with. No one in the house even drank the same beverage for breakfast. Geddie had to have his fresh-brewed coffee; Daddy had to have instant; and I, of course, drank tea. So every meal was a challenge, and so was the thermostat. They were cold, and I was hot."
While her husband and father vied for her attention, Loflin's days were full of "long and boring" routines interrupted by crises.
"That first year, we had a monstrous flood in Americus," Loflin said. "We were cut off from all the surrounding areas because all the bridges were washed out. During that time, Geddie had his first seizure. He was rushed to the hospital, and our old dinosaur of a furnace died, and the usual repairs and the upkeep of a home, a yard, a car and all of the endless doctor appointments for three people had to be taken care of."
Buying their first computer proved to be a saving grace. She learned new technology while searching for speech programs to help and entertain Geddie.
"The children had great fun laughing at my first attempt to use the mouse," Loflin said. "My daughter, Leslie, told me to just play with it, because I couldn't mess it up -- famous last words. So within hours, the hard drive was completely wiped out, and they were gone, back to Midland."
Then she reminded herself of her favorite quote from Winston Churchill: "Never give in, never give in, never, never, never -- in nothing great or small, large or petty -- never give in, except to convictions of honor and good sense."
"So I battened down the hatches," Loflin said. "I consulted the instruction manual and the replacement disk, and after four long hours and much frustration, the new Apple computer was purring along."
The computer enabled Loflin to take her husband on virtual trips around the world. She would research the destination they chose and even would cook a meal based on the region's cuisine. Then they would take an afternoon or evening and immerse themselves in that culture, "seeing the sights of other places instead of our four walls."
Stress and strain
But no instructional manual or computer helped relieve her stress and strain. Her back pain flared. She broke out in hives. She got too little sleep and sought comfort in too much junk food.
"The loneliness set in," she said. "It was almost unbearable. Every day was the same: an endless expanse of duties and appointments with conflict at every turn."
Caring family and friends did what they could, but she realized it ultimately was up to her to seek professional aid.
"It was a turning point," she said. "I could go on being what I call brave, and eventually collapse, or I could ask for help. I was well on my way to caregiver burnout. I thought I could do it all myself, because no one else knew how to take care of my loved ones like I did. Of course, this was taking a huge toll on my wellbeing."
So she turned to the Rosalynn Carter Institute for Caregiving. Carter "had seen her own mother care for family members and knew firsthand how the caregivers desperately needed to take care of themselves," Loflin said. "She thought there was a huge need for us to become aware of this mushrooming problem, because our aging population was growing by leaps and bounds, and, as we all know, with age health, failing health, is a factor."
Loflin enrolled in a course at the institute called "Caring for You, Caring for Me." The course "opened my eyes to how very, very important it is to take care of oneself so you can do a better job of caregiving."
After setting up weekly respite care for her husband and father, she volunteered at the institute's library, planted a herb garden and started a women's investment group.
"If it had not been for the understanding of the many workers and the hours of respite time that I received, I dare say I would not have survived," she said. "Yes, there were problems having strangers coming to the house to perform personal duties, but we learned to communicate. We learned to communicate with all the workers, and we built trust and respect while conveying our needs. We listened, and we learned from their innovative approaches in dealing with daily care. My family, my friends and, most of all, a strong faith brought us through those difficult years."
Her father died 15 years ago, followed by her husband nine years ago. "But I thank God and all of the helpful professional caregivers for giving us 11 years of a good life," she said. "It may not have been the retirement that we always pictured, but we were together."
Loflin listed the following ways caregivers can get help:
Home healthcare services. "These agencies provide home healthcare aides and nurses for short-term respite care. Whether it's for a few hours or a few days, it's money and time well spent. These programs offer seniors a place to socialize, to engage in a variety of activities and outings and receive needed medical and other services."
Adult daycare and nursing homes or assisted living facilities. "These institutions sometimes offer short-term respite to provide the caregivers with a much-needed break."
Private care managers. "These professionals specialize in assessing your current needs and coordinating the care."
Caregiver support services. "These programs for caregivers help to recharge batteries by meeting other people who are coping with similar dilemmas."