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Part I: Coping as a caregiver for a parent who's in denial

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Part I: Coping as a caregiver for a parent who's in denial

EDITOR'S NOTE: This is the first of a two-part series featured in the Gray Matters Solutions Journalism project. 

MANSFIELD -- Jane Imbody sensed that something wasn’t quite right with her mother, Corrine Imbody.

One minute Corrine would say something, and -- much like a broken record -- would repeat herself shortly after. 

The tipping point was in 1999 after visiting family in Florida. Corrine, who lived in Marion at the time, made the trip with Jane. When they returned to Jane’s home in Mansfield, Corrine decided later that morning to drive herself back to Marion. 

The next morning, Jane received a call from a sheriff’s deputy in Ann Arbor, Michigan, informing her that Corrine was in the Great Lakes State.

“She had driven for almost 24 hours and ended up in Michigan,” Jane said.

It was after that incident Jane insisted that her mother be screened for Alzheimer’s.

Before the diagnosis

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Corrine Imbody circa 1996

Corrine Imbody was a worker. She kept a job in the medical records department at a clinic until about three months prior to her 70th birthday.

She raised five children (four sons and a daughter) and was the primary caregiver for her husband when he was diagnosed with cancer. He succumbed to the disease at age 65.

Five years after her husband’s death, Corrine lost one of her sons.

“The loss of my brother was hard on the entire family, but it was especially hard on my mom, so my mom and I grew even closer after that,” Jane said. “We were always close, but I think we grew closer after that."

Jane described her mom as a sensible, practical person. That’s why it seemed odd when her behavior began to shift.

The diagnosis

Upon noticing a change in her mother’s demeanor, Jane, who worked as a reporter for WMFD at the time, contacted the Alzheimer’s Association for guidance.

“As a reporter I had exposure to them and had interviewed them in the past so I called and said, ‘I need to find out what's going on with my mom,’” Jane said.

They gave her the names of a few neurologists and Jane called to make an appointment with the head of the department of cognitive neurology at Ohio State. It was November at the time, and Jane was told she couldn’t get an appointment for her mother until the end of February.

In the meantime, Jane and one of her siblings met with an attorney to see that Jane was granted power of attorney to represent Corrine, who didn’t have a living will.

When Corrine was finally able to meet with the doctor, she underwent a series a tests once a week for four weeks.

In March 2000, she was diagnosed with Alzheimer’s, at 75 years old.

“I'll never forget (the doctor) said, ‘You don't know 100 percent if somebody has Alzheimer's until they die. But in your mom's case I’m 99.9 percent sure.’”

As they left the doctor’s office, Jane shared that they’d have to make some changes, to which Corrine replied, "There's nothing wrong with my head. My head's just as good as your head,' ” Jane recounted.

Denial

“My mom was in complete denial from the outset, which made the whole thing even more difficult,” Jane said. “There are some people who when they are diagnosed, they still have enough cognitive ability to understand what that means and to help maybe share in some of the measures that you have to take to help them.

“My mom was in total denial. She never accepted it. She never thought anything was ever wrong with her.”

Over the next year, arrangements were made to have people visit Corrine during the week to ensure that she was eating and taking her medication.  

Jane would visit on weekends and handle bills and other house chores.

“Our goal from the get-go was to delay my mom having to go to a nursing home as long as possible because any sort of change is extremely difficult for anybody with Alzheimer’s, and we knew mom wanted to stay in her house,” Jane said.

“But then we also knew we didn't have a lot of money and assisted living is terribly expensive. And at the time, no assisted living facility would take Medicaid.”

Unbeknownst to her children, Corrine had stashed away $21,000 of cash in various spots throughout her house.

“She was always a person who would go to the bank, but she started getting paranoid, and that’s part of the disease,” Jane said.

Corrine was prescribed Aricept, a cognition-enhancing medication, but the drug didn't make much of an impact. In fact, her doctor shared that never did he have a patient decline as drastically as Corrine while on Aricept.

“He had explained to us with the way Alzheimer’s works, you might be on a plateau for awhile and then you'll drop and then maybe level out a little bit, then drop. So it's more like stair steps," Jane said. "He said in my mom's case she went straight down and that Aricept really did nothing for her.

“But again, there's no cure for Alzheimer’s. (Aricept) may help minimize some symptoms for awhile, but you know there's really no treatment for it.”

When Corrine was first diagnosed with Alzheimer’s, she received mobile meals, but refused to eat them.

“This went on for about two or three months,” Jane said. “And the caregivers that would come in during the week to try to help her out couldn't get her to eat it.

“I think she thought, ‘I don't need that. I'm fine. I don't need somebody bringing me food because I can take care of myself.’ Again, because she was in denial the whole time that anything was wrong with her.”

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Corrine Imbody, front right, smiles with four of her five children in July 1991. 

Friends and family would stop by to check in, but as the disease progressed, visits became fewer and further between.

“Her sisters stopped visiting her. Her family members stopped visiting. Friends that she used to play cards with, well she couldn't play cards anymore — they stopped coming. But there was one friend that never stopped,” Jane said.

“It was pretty isolating in that she didn’t have that stimulation to help keep her mind a little more.”

The disease progresses

Alzheimer’s, which is the most common form of dementia, manifests itself differently from person to person.

For Corrine, she became violent.

“There were times we would be driving in the car and she's complaining because all her money is coming in to me so I can pay her bills, and she starts pounding on me as I'm driving and hitting me,” Jane said.

“I've often said the day we moved her out of her house, if she would have had a gun we would have all been dead. It was that ugly.”

Jane watched as the disease transformed her mother into a different person.

“You see them changing and it's hard not to get angry and yell at them, especially if they keep repeating themselves,” she said.

“You may raise your voice or start challenging them, but you have to at a certain point: stop, take a breath and say to yourself, 'It's the disease. It's not my mom. It's the disease. It's not my mom.’ You have to constantly remind yourself.”

You also have to find ways to laugh, she said.

“You have to laugh at some of the things that happen because otherwise you'll just cry,” she said.

By June 2001, Corrine required round-the-clock care. Jane considered having her mom move in with her but was afraid to leave her alone at home.

“I thought, ‘She can't be alone and I can't quit my job to take care of her,’” Jane said.

So Corrine moved into as assisted living facility in Marion.

“We wanted to keep her in Marion then because she still had some friends over there,” Jane said. “She had a couple of sisters and a brother and some nieces, and so she knew more people in Marion.”

Then in January 2004, she moved into a nursing home in Mansfield.

‘The long goodbye’

Nancy Reagan, who spent a decade caring for her husband and former president Ronald Reagan when he was diagnosed with Alzheimer’s, described the disease as the “long goodbye.”

“That truly is what it is,” Jane affirmed.

“There's nothing that compares to Alzheimer’s as far as the toll it takes on the family members and caregivers, because it's probably harder for them than it is for the person who has the disease.”

Guilt has a tendency to rear its ugly head when people talk about visiting their loved ones in nursing homes every day or every other day, she said. 

“Once my mom moved to the nursing home, even though she was here in town, I visited like once a week,” she said. “I would check in more often if she was sick or something like that, but most of the time when I’d go she was asleep and she didn't know who I was.”

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Jane Imbody, left, shares a meal with her mother, Corrine Imbody, in the early 1990s. 

As the disease impaired Corrine’s functions, it limited the number of activities she could do.

“We couldn't even walk around the facility because she couldn't walk anymore,” Jane said.

In April 2007, Corrine suffered from a stroke and died one week later at 82 years old.

Alzheimer’s had robbed Corrine of her memories, making it so that even her own daughter was unrecognizable.

“Eventually she didn’t really know who I was,” Jane said.

But about a month before Corrine’s death, Jane stopped by to visit.

“I said, ‘Mom, you know what today is? Do you know what you were doing 47 years ago today? You were having me. Today is my birthday.’

“And she smiled and she reached out her hand and she grabbed my hand.”

This Solutions Journalism story is brought to you in part by the generous support of our Newsroom Partners: Spherion, Visiting Nurses Association, PR Machine Works, Nanogate/Jay Systems, DRM Productions, OhioHealth Mansfield Hospital, Richland Bank, Mechanics Bank, Area Agency on Aging, and many others. To learn more about Solutions Journalism at Richland Source click the "About Solutions Journalism."
 

Thrive Reporter

Thrive reporter. Graduate of Ontario High School and Ohio State Mansfield. Wife. Mom. Dog lover. Fitness enthusiast. Plant collector. Mac and cheese consumer.

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