Caregiver College helps churches offer Alzheimer’s outreach
GREENSBORO, N.C. (AP) — Theirs was the house where everyone gathered on Sundays after church.
“She could fix a meal out of anything,” Janice Holt said of her mother, Annie Ruth Ingram, a caterer and professional caregiver.
And then one day, the daughter stood dumbfounded in her parents’ home.
“She was in the kitchen,” Holt said of watching her mother, then in her 70s, “and she didn’t know how to turn the stove on.”
There had been other incidents of forgetfulness and frustrations before a doctor’s eventual diagnosis of Alzheimer’s, an irreversible, progressive brain disorder.
“We were in denial,” said Holt, a retired nurse who ran the operating room at Moses Cone Hospital. “She carried on the business of the Greensboro Women’s Club. She managed her finances well. This very capable individual — and to say she had what?”
Recently, Holt and her brother took part in a workshop series put on by the Center for Outreach in Alzheimer’s, Aging and Community Health, or COAACH, at N.C. A&T, designed to educate and empower lay health ambassadors to spread the word about a disease that disproportionately affects African Americans. It’s something Holt and her brother want to do to help other families. Their mother died in 2005 at the age of 78.
COAACH — whose work involves research on Alzheimer’s and other forms of dementia, project development and training in areas that address health disparities — funds a Caregiver College to help families dealing with a diagnosis.
That includes an annual caregivers conference and a support group for caregivers that meets on campus the third Monday of each month.
A&T already had a hand in a breakthrough gene study, and researchers hope their work can find a cure for the disease or contribute to a therapeutic drug.
The program involving lay health ambassadors looks to pastors across the state as allies, who then pick two congregants to take part in the training and then commit to organizing at least three events over the next year in their communities. Having the pastors involved gives a certain credibility to the work within the faith communities. The multiple programs help to spread the message even further.
“It provides a larger impact,” said COAACH program manager and researcher Grace Bryfield of partnering with the faith community, “more than COAACH could do by itself.”
Alzheimer’s is marked by regression, memory loss, confusion and behavioral changes resulting from the frustration.
“It wrecks families,” Bryfield said. “It changes family dynamics. The caregiver burden is extremely heavy. We get people saying ... ‘What do we do?’ ”
So, on the second floor of a university-owned building on Yanceyville Street recently, Holt and her brother, the Rev. Charles Ingram Jr., and about 20 others in training as lay health ambassadors slid on eye glasses that mimic color vision loss and gloves that mimic arthritis while attempting to organize colored pills.
As she later listened to speakers, Holt already knew first-hand the toll of Alzheimer’s.
She still grieves the fact that her mother — who came to A&T from a small town to major in English, who after graduation decided to follow her talent with food into catering and took joy in taking care of everyone else — didn’t get the chance to retire and enjoy life.
“She never smoked, she never drank,” Holt said. “She had no nasty habits, she never even cursed.”
Annie Ruth Ingram, who met her husband of more than five decades when she rented a room from the Dudley graduate’s sister while at A&T, ate healthy. Loved to read. Loved nature.
“She loved to walk — she would walk by my house and ask if I wanted to walk with her, and I would say, ‘No, but why don’t you come in and visit,’” Holt said.
The first time Holt can recall noticing something wrong was during a trip to Atlanta to drop off Holt’s son for his freshman year at Clark-Atlanta University. That morning in the hotel, her mother sprang out of bed talking about finding her husband and fixing breakfast. Charlie Ingram had not come with them on the trip.
She also stopped a stranger in the middle of the street to talk.
“I called my brother, and I said, ‘Something is not right here,’ ” Holt recalled.
Her brother took their mother to the doctor, where she was formally diagnosed.
Holt didn’t want to believe it, but the odd behavior continued.
Once, Holt was sitting in the kitchen with her parents, talking to her father.
“She got up and she walked in between us,” Holt recalled of where she and her father were seated. “She said, ’Are you married?”
At the time Holt was divorced, and said so.
“Then you need to get you a husband,” her mother told her. “She took his hand, and he had to leave out of the kitchen.”
Holt can laugh about it now.
“She was like, ‘This woman wasn’t going to be talking to my husband.’ ”
By then, Holt and her brother suspected that their father might have shielded the two of them from some of her early behavior. He was her primary caregiver and always at her side.
“She would tell my father that she wanted to go home while she was at home,” said the son, Charles, of what their father dealt with. “She would pack up her clothes, and he would put them in the car and ride around the block and come back to the house.”
The son still recalls a moment that broke his heart — “When she no longer knew who I was.”
Or herself. Sometimes when she walked past a mirror in the house she spoke to the reflection, not knowing it was her own.
Once, their dad was cleaning out the backyard pool and thought that his wife was indoors. Those indoors thought she was out with him.
She had gone out the front door. For hours, a quickly assembled search group went looking for her.
They found her at the end of a dead end street.
“She found herself in front of a tree and didn’t know how to get around it,” Holt said of her mother just standing there.
Extended family had already stepped in to help. Holt and her brother were taking turns staying at the house overnight. In-home aides were scheduled for the mornings.
Soon, they found professional around-the-clock care for her in a skilled nursing center.
“That’s not what we wanted to do, but we felt we had no choice,” Holt said.
Their father died before their mother, as is the case of about 30 percent of primary caregivers who die before the people they care for, according to studies.
At their dad’s funeral, their mother didn’t know why she was there and had to be taken outside.
“It’s cruel,” an emotional Holt said of the affect on her mother. “It’s awful. To take away the ability she had; mentally, physically and emotionally. It took everything away from her.
“You could look in her eyes, and she looked empty,” Holt said. “There was no memory there. She was educated, she was outgoing, she was physically fit. She was a beautiful person, and that was taken away from her.”
Which is why COAACH is so important to the siblings and others participating. The center opened as part of a $1 million grant from Merck, the pharmaceutical company, and the focus here is getting more black people involved in the research, since they have double the chance of getting Alzheimer’s.
“I know what we went through,” Holt said, “and I just want to do this to help other people cope.”
COAACH recruits lay health ambassadors by holding a breakfast where faith leaders learn about the program and nominate two members of their congregation to spend four days in cooking classes, brain games and aging sensitivity, among other things related to Alzheimer’s.
The program comes with a stipend, and when the training is over, they go back to their churches to do three healthy-living events over the course of a year for their community.
The events can range from a health minute every Sunday to a health fair where they draw on the expertise of their community.
Holt is a member of Mount Olive A.M.E. Zion Church in Greensboro, and Ingram pastors a rural church in Montgomery County.
“We are using the ‘each one teach one’ sort of model,” Bryfield said. “The caregiver burden is extremely heavy, and we know that knowledge is power.”
Stigma is a big part of that burden, she said.
“People don’t want to ask for help,” Bryfield said. “They don’t want to admit there’s something wrong. I say in my presentation that cancer used to be like that back in the day.”
Information from: News & Record, http://www.news-record.com