Chuck Ross is a writer, experienced at gathering and synthesizing information. He has worked as an online content analyst, organizing thousands of bits of data into sprawling spreadsheets. And yet on many days, Chuck still feels ill-equipped for his unpaid, fulltime job: managing his 89-year-old father’s medications, meals, complaints, symptoms, health crises and treatments.
Chuck, who lives on Cape Cod in Massachusetts, has been his father’s primary caregiver since February 2008. He writes about the experience — and the man he identifies only as Dad — in a blog called Life With Father. It’s a way for Chuck both to share what he learns with other caregivers and to work through his own frustrations with that all-consuming role.
The man Chuck calls Dad was born in 1922 and lived most of his life in St. Louis, Missouri. As a manufacturer’s representative for several special machinery makers, he traveled half of each month, crisscrossing a big, Midwestern sales territory by car. After ending that career and living a while in retirement, he went back to work in his late 70s, selling men’s suits at his local J.C. Penney store. He had three children and three marriages, the third lasting 38 years.
In November 2004, Dad had his first serious health scare. Chuck, then based in Chicago, was in St. Louis helping Dad move to an apartment, as his wife had entered a nursing home. "We were getting the last of his things out of the house, and he collapsed in front of me," Chuck recalls. A cardiac work-up revealed Dad needed a sextuple heart bypass: "I didn’t even know you could have a six-way bypass, I thought they topped out at four," says Chuck. That operation, on Thanksgiving 2004, was just the beginning of Chuck’s education in Dad’s health and how aging would erode it.
Dad’s wife died in March 2005. When Chuck relocated from Chicago to the Cape in early 2006, Dad still was managing well on his own. Then, at 10:30 on a Friday morning in February 2008, Chuck says, "I got a call from the emergency room at a suburban St. Louis hospital." Feeling unwell, Dad had stopped eating and drinking, had become dehydrated — and then, when he tried to stand, had fallen, hit his head and opened a gash. The exam at the ER also found a bleeding stomach ulcer. "Hearing the whole story," Chuck recalls, "I just said, ‘This is not a guy who can keep living on his own.’"
Dad’s daughter and step daughter, though emotionally close to him, were physically distant: one in Colorado where Dad couldn’t tolerate the thin air, and the other in northern California in an impractically small apartment. At Chuck’s house, Chuck could live and work from an office upstairs, and give Dad his own quarters downstairs. "My sisters both said, ‘God be with you,’" Chuck says, and helped Dad relocate.
Chuck says his father settled in well, finding several nearby taverns for lunch and senior-center buddies for poker games, and exploring Cape roads in his 2004 Mercury Marquis. The more challenging parts of the move fell to Chuck: Identifying the Massachusetts equivalent of the Medicare Advantage health insurance plan Dad had in Missouri, finding him new doctors, and trying to get prescriptions filled in the limbo period between the old and new medical practices. Since moving to Massachusetts, Chuck says, Dad has acquired "a cardiologist, a pulmonologist, a urologist and a gastroenterologist; a kidney specialist because he has chronic kidney disease, and an ophthalmologist because he had cataracts."
"My father has good doctors, and an especially good primary care doctor who is totally on-board with my father’s unwillingness to give up Scotch and bacon," says Chuck. And yet, he says, "Dad is alive now, I’m convinced, because I’m like a walking medical chart whenever he’s seeing his doctors. The skin doctor wants to remove a skin cancer and asks if Dad wants sedation or local anesthetic; I’m the one who points out his kidney disease, which means a local is the preferred option. The pharmacist points out a newly identified drug interaction; I’m the one calling and following up with the PCP. The Saturday clinic doc sees a high blood sugar reading and prescribes a blood sugar med; I’m the one doing a WebMD search and discovering that it can kill people with kidney disease."
Chuck sees a need for "better cross-communication" among medical professionals caring for elderly patients, and between professionals and family caregivers. "Because I speak well and present an educated, well-informed appearance -- and, maybe because I’m a man -- I generally get listened to," he says. "But there have been major frustrations when I’ve tried to communicate personal intuition rather than hard data — when Dad just seems off. Like when a hospital nurse tried to convince me that his erratic conversation in a phone call was the result of his detoxing off his one-or-two Scotches a night drinking habit: It took him literally passing out in his hospital bed in front of her to find out that his blood sugar was running dangerously low before she began taking me seriously."
In summer 2009, bad circulation in Dad’s left leg resulted in a wound becoming infected, necessitating days in the hospital and two weeks in rehabilitation. From winter 2009 to spring 2010, Dad went through hospitalization and rehab three more times, after blood pressure and kidney problems resulted in dehydration and falls. Then came stent surgery to improve circulation in his left leg. In April 2011, after an evaluation suggested Dad was no longer safe behind the wheel, he had to give up his driver’s license and sell his prized Mercury. In July, he was back in the emergency room with fever and confusion from a urinary tract infection, bronchitis or both.
While Chuck ponders all this in his blog, what does his father say about it? "He doesn’t want to even think about this crap, and he doesn’t want to have to sit down and take eight pills in the morning," says Chuck. "He wants to have his car back and go driving, and have two Manhattans at lunch like he used to when he was 50. He’ll say to me, ‘I don’t understand why everybody says I’m old, I don’t feel old’ — except at the times when he’s feeling like hell, and then he says, ‘Chuck, don’t ever get old.’"
One night recently, to celebrate Chuck’s 52nd birthday, he took Dad out to dinner at Dad’s preferred early hour. Scanning the restaurant, Chuck saw many tables that looked like his own: "A whole lot of folks my age were sitting at table with a whole lot of folks Dad’s age," obviously in the role of caregiver. "Maybe this is something to remember the next time I’m feeling like no one else could possibly understand how beaten down I feel," Chuck wrote in his blog. "There are a lot of us out there now and we’re all doing the best we can."