Having worked with spinal injury patients for more than a decade, Anthony Gallahar knows plenty about the concept of caregiver burden.
If anything, that makes it more frustrating to witness the phenomenon occurring in his mother, Lorna Gallahar. He knows the factors that contribute to caregivers prioritizing others’ health above their own—but there’s only so much he can do to help.
“We always tell caregivers to be careful not to burn out, because if you burn out then there’s nobody,” Anthony Gallahar said. “Her being new to healthcare and new to all that stuff, she doesn’t really have the characteristics to be a caregiver, but she was put in the position to be a caregiver.”
Lorna, 56, and her 75-year-old father, Gilbert Gallahar, fit many of the characteristics highlighted in a recent Journal of the American College of Cardiology paper discussing how medicine has changed the lives of patients with cardiovascular disease.
As medicine has improved, patients are living with more conditions simultaneously and for longer periods of time. Exacerbated by those trends, caregiver burden has increased to “epidemic” proportions, according to the JACC researchers.
Gilbert has suffered two heart attacks, has post-polio syndrome that significantly weakens his left leg and takes 10 medications that treat, among other things, hypertension and high cholesterol.
Lorna has spent the last 15 years looking after Gilbert. She also was a primary caregiver for her mother, Shirley, who died on Christmas Eve in 2015. Lorna has been on disability for those 15 years with a diagnosis of polyneuropathy, which affects the peripheral nerves and causes weakness, numbness and pain. She also has type 2 diabetes and high blood pressure and requires breathing assistance.
Before her death, Shirley would bounce back quickly from her own health issues to sort her husband’s medications and help care for him in their Jeffersonville, Indiana, home. Now those tasks, plus the usual house-related chores, are left to Lorna, who said the last two years have worn on her more than the previous 13.
A big issue is Gilbert’s mobility, which has declined in recent years. He’s mostly confined to a wheelchair or motorized scooter, passing his time watching game shows like The Price is Right, Jeopardy! and Wheel of Fortune.
“If I [could] get out ... as much as I used to, I wouldn’t ever be in the house,” Gilbert said. “But since I have to have help, I can’t do it.”
Even inside the home, Gilbert requires extra attention. He can get to the bathroom on his own—but sometimes can’t make it out, making it difficult for Lorna to leave the house for long periods of time.
“Sometimes it’s hard,” said Lorna, who enjoys grocery shopping and attending her nephew's and grandson’s sporting events. “We argue a little bit because it gets a little stressful for both of us, but it’s nothing that lingers.”
In the JACC study, the authors noted informal caregiving is provided by one-fourth of adult Americans, and many of those are women family members. Informal caregivers account for 90 percent of home care and spend an average of 20 hours per week providing care, they wrote.
A problem with this arrangement, Anthony Gallahar said, is his mother and grandfather are relatively uneducated about healthcare. He questions how much information they retain if he or a better-informed friend or family member isn’t at every appointment to ask the proper questions.
“There’s more people going in there that have no clue what the doctor’s saying. They just know the doctor said to get this prescription,” he said. “I understand from the doctor’s perspective, too, because if you try to explain this stuff to someone who is uneducated—if you try to get in-depth or try to get technical—it’s just going to go over their head anyway. I see if from both sides. I just think there should be more education.”
Anthony said it would be helpful if healthcare systems hired employees to circle back after a physician visit and provide an explanation of treatment plans in layman's terms. He has attempted to stress the importance of sticking with medications to Lorna, who, like many patients, tends to think she’s healed once symptoms subside.
“It’s more keeping her compliant on what she needs to do to maintain her health,” he said.
After all, it’s not just Lorna's well-being—but Gilbert’s, as well—that depends on it.