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Alzheimer’s On The Mind – The Honeymoon Ends

August 14, 2012 by Rose Hoban in Featured, Long Term Care, Medicare

Chuck Barbour was a talker, a writer and liked to be the center of attention. That’s part of why Alzheimer’s hit him, and his wife Jeannette, so hard. The second in a five part series about living with Alzheimer’s in North Carolina.

By Michelle Cerulli

October 2009, Durham

Jeannette Barbour stood at her bathroom mirror, sweeping bright pink lipstick across her bottom lip, blotting powder on her face.

She switched off the light and grabbed her keys and purse. She was on her way to visit her husband Chuck, then 78, in the Alzheimer’s unit of the assisted living facility where he lived. He moved there a week prior.

Jeannette Barbour at her home in Durham. Photo credit Michelle Cerulli

Jeannette Barbour at her home in Durham. Photo credit Michelle Cerulli

Jeannette drove down Roxboro Street. From her house to Chuck’s new home was about 10 minutes.

Once there, Jeannette signed in and moved across the foyer toward the door to the secure Alzheimer’s unit.

She opened the door, and made her way to the living room, where she expected Chuck to be.

Eager to see him, Jeannette quickened her step.

She reached the living room and saw the other residents sitting around in plush armchairs. Then, Jeannette saw Chuck sitting, holding hands with the female resident beside him.

Jeannette forced a smile. Then she looked over to a nearby aide, who was attending to things behind a desk.

“Well, I guess our 58-year-old honeymoon is over,” Jeannette said.

A new normal

Chuck Barbour first began having trouble with his short-term memory in 1999. His primary care physician treated him with Aricept, a drug used to treat the symptoms of Alzheimer’s and other types of dementia. But the medication made Chuck nauseated as soon as he started taking it.

“He said, ‘Hell, I’d rather walk into walls than take this,’” said Jeannette, smiling. “That was just his way.”

So Chuck and Jeannette got on a six-month waiting list for Duke’s Memory Disorders Clinic. Their first visit to the clinic was in 2000.

Alzheimer’s diagnosis typically involves a succession of physicians, neurologists, psychologists and other medical professionals, using a combination of screening tests, exams, brain scans, questionnaires and reviews of medical history. Physicians specialize in the disease, but a certain Alzheimer’s diagnosis is only possible after death through brain autopsy.

Just receiving a probable diagnosis can take one or two doctor’s visits or several years, depending on the patient and his or her stage of the disease.

It took about two years for Chuck’s neurologist at the Memory Disorders Clinic to diagnose him with early Alzheimer’s. At the time, his symptoms would come and go. On good days, Chuck was lucid and alert. But on bad days, he became easily irritable and confused.

This image shows a PiB-PET scan of a patient with Alzheimer's disease on the left and an elderly person with normal memory on the right. Areas of red and yellow show high concentrations of PiB in the brain and suggest high amounts of amyloid deposits in these areas. Image University of Pittsburgh, PET Amyloid Imaging Group

This image shows a PiB-PET scan of a patient with Alzheimer’s disease on the left and an elderly person with normal memory on the right. Areas of red and yellow show high concentrations of PiB in the brain and suggest high amounts of amyloid deposits in these areas. Image courtesy University of Pittsburgh, PET Amyloid Imaging Group

“It’s certainly not a rapidly progressive disorder,” said Dr. James Burke, a neurologist at Duke. He is also the associate director of the Bryan Alzheimer’s Disease Research Center, one of 29 national Alzheimer’s research centers funded by the National Institute on Aging.

Burke looks for two things when it comes to Alzheimer’s diagnosis: that a patient’s daily functioning has become impaired and that his or her cognitive testing also shows impairment. Patients who exhibit mild impairment in cognitive tests but have no changes in daily functioning are likely have mild cognitive impairment (MCI) – a degree of mental deterioration that is greater than would be expected from aging alone.

“MCI is a very heterogeneous category,” Burke said. “At the end of three years, 50 percent will convert to dementia and 50 percent won’t. It has nothing to do with what people are doing. We watch for changes in their clinical situation.”

No single examination, test or procedure can detect Alzheimer’s. Doctors must rule out other potential causes of patients’ symptoms, such as stroke, vitamin B12 deficiency or thyroid disease.

“Alzheimer’s historically has been a diagnosis of exclusion,” said Dr. Daniel Kaufer, a neurologist and director of UNC’s Memory Disorders Program. “We want to make sure there isn’t an alternate explanation that could account for the cognitive symptoms.”

As part of the process, physicians often ask patients to spell words backwards and forwards, identify the names of common objects, and complete word and other types of puzzles. They also use brain imaging, such as MRI or CT scans.

Becoming a caregiver

Jeannette Barbour, 79, has been the primary caregiver for her husband Chuck since he was diagnosed with Alzheimer’s in 2001. She is an animated, petite woman whose voice sounds as if it’s been dipped in sweet tea.

She describes Chuck as a self-made man and her childhood sweetheart. Both from Durham, they met at a church Halloween party, while bobbing for apples. Jeannette was 9 years old, Chuck was two years older.

“I was trying to get an apple,” Jeannette said. “And he walked up and said, ‘You want me to show you how to get one of those apples?’ and I said, ‘Sure.’ I guess I just assumed he was going to show me some trick. Well, he reached his hand down and picked up the apple and gave it to me.

“And that’s kind of the way Chuck Barbour was,” she said. “He loved to tease.”

Chuck joined the Army at 17 and fought in the Korean War. When he came back, days before Jeannette’s high school graduation, they got married, without telling anyone until after they did it. Jeannette was afraid her family would try to talk her out of it.

Chuck and Jeannette dancing at their daughter Lisa's wedding in 1981. Photo courtesy the Barbour family.

Chuck and Jeannette Barbour dancing at their daughter Lisa’s wedding in 1981. Photo courtesy the Barbour family.

Chuck became a reporter and later managing editor for the Durham Morning Herald. Jeannette worked as a switchboard operator for a business and loan association. They went out dancing. Chuck took up golf. The Barbours started a family together in Durham, and in five years, they had four children, three daughters and a son.

This year marks Jeannette and Chuck’s 61st wedding anniversary. Their life now is not what Jeannette hoped it would be.

She lives alone in the tidy house she and Chuck shared. Two of her daughters and her sister and brother-in-law live nearby. Jeannette often flits from task to task, sometimes getting distracted, or losing her train of thought, or forgetting why she entered a room in the first place.

Standing in her hallway one morning, she pointed to a handsome man in a large family portrait hanging on the wall.

Yep, that was my hubby,” she said. Then corrected herself. “Well, that is my hubby.”

She refers to Chuck’s disease as his “memory problem.” She doesn’t use the word Alzheimer’s when speaking to him because he doesn’t know what it means.

For the past three years, Chuck has lived in the Alzheimer’s unit of an assisted living facility in Durham. Jeannette visits him almost every day. He always recognizes her, but sometimes calls her by his mother or sister’s names.

She said Chuck adjusted quickly to living in a new place, much more quickly than she did. As much as she wanted to be able to continue to care for Chuck at home, Jeannette could no longer manage his problems with incontinence or lift him if he fell. When Chuck first moved into the facility, Jeannette called his bedroom “our room,” an effort to maintain some semblance of their normal life. She still calls it that.

At the beginning, Chuck walked around the facility, patting the other residents on the shoulder and asking them how they were. Then he began to have trouble walking. He started playing with his food and needing help going to the bathroom, which is still the case.

The man Jeannette married was a conversationalist who loved to charm and joke. But when Chuck talks, he doesn’t make much sense anymore.

Since the onset of Alzheimer’s, words – once Chuck Barbour’s forte – now fail him.

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.

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