Millions of baby boomers are hitting retirement age. And many of them will find themselves with Alzheimer’s disease or caring for someone who does. The first of a five part series on living with Alzheimer’s in North Carolina.
By Michelle Cerulli
Joan McCormick remembers the day her husband Bill first told her something was wrong with his memory. It was October 2001.
Bill, then 55, was driving on Old N.C. 86 to his home in Hillsborough. He was paying close attention to the road. He knew exactly where he was and where he was going… and then he didn’t.
In a matter of seconds, Bill couldn’t figure out if he was driving north or south, toward home or away.
An elementary school principal at the time, Bill reoriented himself after a few minutes. But he didn’t mention the incident to his wife until two or three days later.
“Honey, do you ever get confused about which way is north and south on Highway 86?” he asked.
“Well, no, I don’t suppose that I do,” Joan said.
The incident worried Joan. She began to monitor her husband, on the lookout for signs of stroke, which she thought may have caused his disorientation. Bill had high cholesterol, which could lead to blocked arteries and decreased blood flow, two precursors to stroke.
Or maybe he was feeling overstressed and preoccupied with work, Joan thought. She made a mental note that Bill should go for a physical exam.
The idea that Bill may have Alzheimer’s disease never crossed her mind.
Alzheimer’s is a progressive and fatal neurological disease, for which there is no cure. It is the most common form of dementia, a general term for memory loss and cognitive impairment.
Epidemiological studies have found that Alzheimer’s affects anywhere from 3 million to 5.4 million people in the United States. (Differences in study criteria account for the substantial range.)
Alzheimer’s destroys brain cells, causing memory loss and problems with thinking and behavior that are severe enough to affect daily life. Memory loss is typically the earliest and most pervasive symptom of Alzheimer’s. As the disease progresses, patients often begin to have trouble communicating. Confusion with time and place can occur as well as personality and behavior changes. The disease gets worse over time until it eventually kills the patient.
Alzheimer’s is often called “the long goodbye” because it involves an accumulation of losses over years. Gayle Ginsberg, a social worker and support group leader in Wilmington, N.C., said she believes the hardest thing for caregivers is the realization that their loved one is a different person from who he or she once was.
You lose the person you’re caring for before they actually pass away,” Ginsberg said. “So you’re grieving all the time.”
In 2011, about 15 million people in the U.S. provided some form of unpaid care for someone with Alzheimer’s or another type of dementia, according to the Alzheimer’s Association. Roughly 415,500 of these caregivers lived in North Carolina. The Alzheimer’s Association – the leading U.S. voluntary healthcare organization for Alzheimer’s care, support and research – bases these estimates on data from the Centers for Disease Control and National Alliance for Caregiving.
Alzheimer’s caregivers are spouses, children, siblings, friends and sometimes parents. Throughout disease progression, which is often slow, these people lose pieces of the loved one they once knew.
“That’s part of grief reaction,” said Lisa Gwyther, director of the Duke Aging Center’s Family Support Program. “Those losses are prolonged in a degenerative process, and people grieve each one of them separately.”
An accumulation of mental notes
The McCormicks are soft-spoken, gentle people, who are nearly inseparable. Joan’s gray-white hair, worn in a short bob, sweeps across her forehead to one side. Both wear oval-shaped glasses.
A mutual friend introduced them when Joan was in nursing school at UNC-Chapel Hill. Bill was an undergraduate.
“I was telling people that I met the girl that I was going to marry,” said Bill, his heavy lidded eyes directed at Joan.
They married in 1969. Joan went on to work in public health nursing, and Bill became a middle and high school science teacher before going to graduate school at UNC and becoming a school principal in Hillsborough. The couple had two children, who now live in Southport, N.C., and Savannah, Ga., and are raising families of their own.
“It’s been fun ever since,” Bill said. A smile signals he’s teasing, but he means it.
Looking at him now, it’s hard to tell Bill, 66, has Alzheimer’s. He and Joan exercise every day by walking outside or on their home treadmill. They attend support group meetings several times each month. They go out to eat and visit with family and friends in and around North Carolina.
Unlike people in later stages of the disease, Bill always knows who Joan is. He hasn’t forgotten his kids’ names. When he is frustrated, he doesn’t refuse to eat or revert to childlike behavior, two behaviors characteristic of more advanced Alzheimer’s.
Their home in Hillsborough is set back from two main roads in a wooded area. Bill enjoys watching the birds flit around his yard and near a feeder, which Joan outfitted with a special cover to keep squirrels and deer from getting at the seeds.
They maintain as normal a routine as they can.
Beginning in 2000, little signs, like Bill’s disorientation with direction, would occur every three to four months.
“His last month or two at work, he told me about a time of going into his co-worker’s office by mistake,” Joan said. “He thought it was his office. I think he was puzzled about what was happening. And so we just took little mental notes.”
An accumulation of those mental notes eventually brought Bill and Joan to their family doctor in 2003, at Joan’s insistence.
Initially, their doctor dismissed Bill’s cognitive problems as depression. He referred Bill to a psychiatrist, but Bill didn’t make the appointment. Neither Bill nor Joan thought he was depressed. Plus, the psychiatrist was the parent of one of the students at the school where Bill worked, so he didn’t feel comfortable going.
Soon after, Bill went back to the doctor for a follow-up appointment for high cholesterol and blood pressure. Joan encouraged him to bring up his directional problems again.
Bill did, and this time his doctor referred him to a general neurologist. At the time, Bill and Joan didn’t know about specialty clinics like the UNC Memory Disorders Program. They ended up seeing Dr. Michael Soo, a neurologist in Durham, who saw Bill’s problem for what it was, Joan said.
Dr. Soo said he thought Bill had a neurodegenerative disease in the family of Alzheimer’s. What Bill had was mild cognitive impairment (MCI), but Soo didn’t call it that at the time, Joan said.
After cognitive testing, lab work and an MRI, Soo offered Bill a medication called Aricept, one of five FDA-approved drugs that attempt to modify Alzheimer’s symptoms. Bill began taking it, unsure if it would help him. For many people, these medications are not effective.
“What he didn’t have for us was what to do about it,” said Joan, with a soft, short laugh. “You know, when you tell someone you may have Alzheimer’s, that’s a real bombshell, and then you don’t know if it’s real or if it’s really going to progress. We didn’t get an immediate, definitive diagnosis or definitive steps about what to do.”
When called Bill’s caregiver, Joan is quick to correct that they are care partners, equal agents in Bill’s care.
Michelle Cerulli prepared this series as her master’s thesis for the School of Journalism and Mass Communication at UNC Chapel Hill. You can follow her on twitter @michellecerulli.