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It took Barry Cox about three weeks after his father’s sudden death from cancer to learn he already had begun to lose his mother, too.
The Elizabethtown man was holding his father’s hand when his dad told him a little frantically that Cox had to take care of his mother.
Cox promised he would.
He knew for years there was something wrong with his mother, Mary Jane Cox. Every time family members visited, his father walked her back to her room and said she was tired.
Cox’s father became defensive on the couple occasions Cox suggested his father take his mother to a doctor because it seemed strange she was tired so often. His father said he took her for tests and there was nothing wrong.
Cox doesn’t know whether his father was hiding Mary Jane’s Alzheimer’s disease, now at stage 5, because of the stress he was under or because of some generational bias.
There are seven stages to the disease.
“I lost my dad, and then I realized I lost my mom before I lost my dad,” he said.
He also doesn’t know how his father coped for so many years with the symptoms he saw in his mother.
“I was her husband, her brother; everyone in the world except her son,” he said.
The final sign something wasn’t right was when she disappeared from her son’s house a few weeks
after moving in. After two hours of searching, Barry Cox and his fiancé thought to check at the hospital where his mother had last seen her husband.
A driver had dropped her off there at her request.
The episode led to a diagnosis of Alzheimer’s disease.
The disease is the most common form of dementia and worsens over time until it shuts down brain function controlling life-sustaining processes and leads to death.
Nearly half of adults 85 and older have Alzheimer’s, and half of the estimated 5.4 million Americans with the disease might not know they have it, Alzheimer’s Association reports.
As the disease is becoming better understood and methods for coping with, slowing and preventing it are being developed, experts are trying to help local families face what can be a frightening diagnosis.
They also are trying to meet the need stemming from an increasing number of cases. A new case of the disease develops in America every 68 seconds. That number is expected to increase to every 33 seconds by 2050, according to the Alzheimer’s Association.
On Thursday, the Alzheimer’s Association in Louisville presents the third part of a free presentation called Living with Alzheimer’s at Pritchard Center in Elizabethtown.
The previous two sessions talked to unpaid caregivers about how to handle early and middle stages of the disease. Thursday’s session addresses late stages.
Sheroll Carby, community education coordinator for the Louisville office, told about 30 audience members at the first session at Pritchard Community Center care arrangements need to be made as soon as possible, including making sure someone in the family has power of attorney and custody of the patient.
It’s best to do that in the early stages because it can become more difficult once patients no longer can agree voluntarily to the arrangements.
Louisville resident and Magnolia native Sherri Hall knows that lesson well.
She got advice from Adult Protective Services one day after her mother filed a complaint alleging she was being confined against her will at Atria Senior Living in Elizabethtown.
Hall said she and her mother, Sue Meredith, had agreed Meredith should go to Atria because she couldn’t be left alone and didn’t like the string of home health care assistants her daughter hired.
Meredith also wanted to be closer to her friends and family in the area.
Still, Hall said her mother sometimes wants to leave the facility and once tore out a window screen to escape.
Hall became accustomed to Meredith filing police complaints against her.
Before her mother moved into Atria, Hall twice was contacted by police responding to Meredith’s complaints Hall stole her car and wouldn’t give it back.
Hall said she explained her mother was too confused to drive and she took the keys and put a security bar on the its steering wheel in case there was another set of keys she didn’t know about.
Experts say taking away an Alzheimer’s patient’s driving privileges often is one of the most difficult things to do because it is a clear symbol of lost independence. Many patients lash out in response.
Carby suggested families sell a patient’s car if that person continues to find ways of accessing the vehicle because it can be dangerous for others on the road.
An Adult Protective Services complaint against Hall was resolved as easily as the complaints to police were.
A representative of the agency recommended Hall get legal custody of her mother to avoid scenarios he saw of family members, neighbors or other self-interested parties coming out of obscurity to take control of a patient’s care and finances.
Hall said she was glad she took that advice when her mother called a Hodgenville lawyer to help her get out of the facility.
The lawyer seemed to plan to get custody of her mother and the woman’s finances, Hall said. He went away when he learned Hall already was granted that responsibility by the court.
Being a caretaker sometimes means Hall has to make tough emotional decisions, as well.
She is mourning the loss of her son, who died recently in a car crash at the age of 28.
She said her mother’s disease leapt forward quickly after her husband died of cancer, so Hall did not plan to tell Meredith about her grandson’s death.
Her mother doesn’t often ask about her grandson, and does not know how she’ll respond the next time her mother asks, Hall said.
“I’ll have to cross that bridge when I come to it,” she said. “I’ll say … I don’t know. I don’t know what I’ll say. I’ll just have to think of something to tell her.”
There are some positive elements to helping her mother.
Hall said her mother always was independent — she replaced the roof of a home while in her 70s. This is the first time Hall has felt like her strong-willed mother has needed her.
“We’ve actually become closer during this time, to be honest. A lot closer,” she said.
Carby said one of the most important points for caregivers to remember about helping someone with Alzheimer’s is to take care of themselves.
About half of older caregivers die before the person for whom they are responsible. Contributing factors include increased likelihood of physical strain, mental and emotional stress, depression and financial problems.
In 2012, the average cost of medical and long-term care for an Alzheimer’s patient was $43,847. About $9,000 of that was paid out of pocket.
Cox was dating his fiancé, Sabine Bonano, for more than four years before his mother came to live with him.
It took about six months before he realized he couldn’t give his mother the care she needed. He helped move her to Atria.
During the time his mother lived with them, Cox watched Bonano help his mother dress, get to the restroom, bathe and perform countless other tasks with patience and kindness.
“I told my friends about it, and I said, ‘I really need to seal this deal,’” he said.
Atria staff also offered important support, making sure Mary Jane stays as active as possible.
Her son said she stayed sedentary at his home and showed no interest in doing the sorts of activities she once loved.
Her new home has trips and activities for residents and pushes her to fill her free time with the kinds of things she used to enjoy.
Cox said that help has stimulated his mother to move and remember more, slowing and even reversing some of the symptoms he observed when his mother came to live with him.
One of the most valuable forms of support is from employers, he said.
Cox, a New Highland Elementary School teacher, is allowed to answer his cellphone during class because the call could be an emergency related to his mother.
“I’m very fortunate that when I get a phone call in the middle of the day, I get to go,” he said.
Mary Jane said it causes her trouble sometimes when she forgets names or other details, but people typically are nice about it.
“You know how it is when you forget things, and I can start out and forget where I was going,” she said.
When that happens, Mary Jane returns to her room until she remembers what she meant to do.
She hasn’t forgotten growing up as the youngest girl in a family of seven children in Hazard, and her dresser and walls are covered in photos of people whose names she nearly always recalls.
Next to the nameplate outside her door is a photo of her as a young woman, eyes lifted toward the sky.
Her son said the photos are how his mother and other residents find their rooms because in their minds, they still look like they do in the pictures.
The caretaking process has been challenging and rewarding, he said.
“It’s an honor to take care of the person who took care of you your entire life,” he said. “You are who you are based on the person who took care of you, and you want to be able to do something.”
An estimated 800,000 adults with Alzheimer’s are living alone, according to the Alzheimer’s Association.
For information about Alzheimer’s-related resources in the area, call the Alzheimer’s Association’s 24-hour help line at (800) 272-3900.
Amber Coulter can be reached at (270) 505-1746 or firstname.lastname@example.org.