FARMINGTON — When Dr. Jeffrey Johnson started treating Alice Osborne, who has dementia, he thought she had little chance of surviving more than a few weeks.

Her health had been steadily deteriorating while she lived in a nursing home, making it unlikely that she would heal from a simple foot wound without life-threatening complications, he said.

Then her daughter and son-in-law, Cheryl and Larry Barkow, moved Osborne into their Farmington home nearly three years ago, became her full-time caregivers and saved her life, he said.

“It took a lot of effort and major sacrifices on their part, but they are the biggest reason that she is alive today,” Johnson said during a recent checkup of Osborne, now 93.

Although the medical community knows dementia patients fare better at home than in nursing homes, many people are just overwhelmed by caring for someone with such a life-altering brain disease, he said.

“Your average person can’t do it because it takes someone very special to do what they do,” he said.

And despite the many challenges of caring for someone with dementia, there are thousands of people like the Barkows who face a daily struggle to better understand the disease, he said.

There are more than 37,000 people in Maine with dementia, a term used to describe a range of diseases that damage brain cells, affecting everything from the person’s memory to physical abilities.

About 75 percent of them have unpaid at-home caregivers, many of whom are family members caring for the typically elderly patients, according to the Alzheimer’s Association Maine chapter.

The Barkows have worked hard to learn how to care for Osborne. They’ve tapped into at-home caregiver networks and attended classes where they share their stories with others. The couple also decided to share their experience, hoping to help others realize they are not alone in caring for someone suffering from dementia.

‘We never give up’

A picture of Cheryl and Larry Barkow sailing on Lake Michigan greets visitors to their home, a small one-story house off a remote road near the border separating Farmington and Industry.

Taken nearly 15 years ago, the photo shows a smiling couple in bathing suits, surrounded by blue water that almost fades into rolling hills in the background. It hangs in a large wooden frame on a wall outside the kitchen where the couple spends a lot of their time now.

Last week, the husband, now 65, recalled that day on the lake and other fond memories of the couple’s travels across the country. He paused for a moment and smiled at his wife sitting at a table with her mother.

“We would have liked to do some more sailing and things changed, but there is always time to do things in this life,” he said.

His wife gently touched her mother’s hand before smiling back and responding: “We never give up.”

‘A whole new relationship’

Cheryl Barkow grew up in a farmhouse on Osborne Road, a gravelly stretch named after her family, which had worked the land in the rolling hills northeast of downtown Farmington in Franklin County.

The youngest of 13 children, with just three boys, she learned to work hard on the farm alongside her siblings and parents. She married at age 18, had two children, got divorced and worked at several manufacturing plants in the area during the years.

Larry Barkow was raised in Michigan City, Ind. He describes his childhood as a “little big-city” upbringing in the Midwest, his widowed mother teaching four sons a strong work ethic after her husband died when Larry was 4 years old.

He served four years in the Marine Corps during the Vietnam War, returning home in 1969. He had three children before getting divorced and worked at steel mills and railroads in the Midwest before moving to Maine.

Larry Barkow calls himself a self-taught engineer who moved wherever the jobs took him, which is how he met his wife about 15 years ago when they both worked at the Forster’s Manufacturing Co. mill in Wilton.

Their courtship lasted four years. They got married and settled in their Farmington home, which is down the road from the Osborne homestead. The couple soon decided they wanted to travel cross-country together, prompting the Larry Barkow to take a job as a truck driver so he could take his wife on the road.

They spent nearly a decade in a tractor-trailer’s cab together, seeing 48 states along the way, before deciding to take care of Cheryl Barkow’s mother, whose dementia had slowly progressed.

They said Osborne, who lived alone after her husband died nearly 20 years ago, started to insist on giving things away one day. And every time she pushed a gift on someone, the next day she would start accusing people of stealing after getting confused when she looked for the item and couldn’t remember what happened.

After a while, Osborne no longer could take care of herself because dementia had started to rob her of many mental and physical capabilities, forcing her children to take her into their homes and eventually place her in a nursing home in Farmington.

Her children struggled over the tough decisions about how to handle their mother’s care. Arguments between some siblings centered on a desire to avoid placing the burden of at-home care on one family, as well as the uncertainties tied to moving Osborne into a nursing home.

When they did move Osborne into a nursing home, her health began deteriorating almost immediately. She got weaker by the day when she started to refuse to eat and stay active. The dementia seemed to be sapping her will to live.

When Osborne moved into the Barkows’ home, her son-in-law was still driving a truck and would leave his wife home alone to take care of her mother. Cheryl Barkow soon found herself completely overwhelmed, feeling helpless and unprepared to meet the demands of the situation.

Simple questions about clothing and food sent her mother into fits of rage, sometimes lasting for hours. She would dwell for days on a random memory about someone who died years ago, constantly asking about the person and becoming despondent when told about the death.

Nights took the biggest toll on Cheryl Barkow because she would be constantly worrying about her mother, who was still able to walk at the time and was in danger of wandering off and getting hurt. Barkow could hear her mother having violent nightmares, shouting and pounding on the walls, and would go running into the bedroom to comfort her.

The daughter spent countless hours sitting bedside and holding her mother’s hand until she fell asleep, but many nights they simply went without sleep because of the severe night terrors.

Cheryl Barkow fell and hurt herself one day while caring for her mother, who would often go limp while walking with a walker and her daughter’s help. After the incident, Larry Barkow took an early retirement from truck driving to help care for Osborne.

That’s about the time when Cheryl Barkow took a class for at-home caregivers of dementia patients, sharing what she learned with her husband. After the class, things started to get better for the couple and Osborne.

They quickly incorporated the new techniques from the six-week course — known as Maine Savvy Caregiver — which is a free elderly services program that is trying to meet a growing demand for teaching the thousands of unpaid, undertrained at-home caregivers across the state.

The couple learned the most important thing for Osborne is to establish a rigid daily routine. The schedule helped them avoid confusing questions, painful memory relapses and small surprises that had been triggering her agitation and frustration.

They started to watch facial expressions more closely because it gave them a better understanding of Osborne’s internal struggle, since the degenerative brain disease had left her unable to tell them when she was angry or confused.

Nights got better because they realized Osborne was agitated by shadows and getting over-stimulated late in the day, a condition among dementia patients known as sundowning.

Visits from family members and friends also became more controlled to fit into the routine. The couple started to plan visits, asking people to call ahead and come in the morning to avoid problems with sun-downing, and gave everyone a crash course in how to interact with Osborne.

In addition to her 13 children, Osborne has 36 grandchildren, more than 50 great-grandchildren and 10 great-great-grandchildren.

The Barkows also got involved in the medical care of Osborne, who takes 13 medications for everything from diabetes to acid reflux. They monitored her reactions to new medications, shared that information with doctors and learned how important it is to ask plenty of questions during the frequent checkups.

A health aide from Elder Independence of Maine, a nonprofit home care agency, comes for two hours to help the couple every morning. Another aide comes once a week to give the couple five hours away from home, and family members also help out to give the couple a few extended breaks each year.

The couple takes Osborne to Franklin Memorial Hospital in Farmington once every three weeks. She gets checkups and her foot treated by her doctor and has made a full recovery from the wound.

Osborne doesn’t fully recognize the Barkows any longer, but she responds to them in ways that show the emotional connection remains.

Whenever she is upset, holding her daughter’s hand seems to be the best way to calm her. When she has to move from one position to another, she gets agitated but relaxes when Larry Barkow wraps his arms around her and guides her during the shift.

“Cheryl is her security blanket and I’m her rock,” he said.

Although he plays a big role, Larry Barkow credits his wife with making the whole situation work. He praised his wife while they sat with Osborne in their kitchen last week.

“You have to be very unselfish; and Cheryl, you are the most unselfish person I know,” he said, a slight tremble in his voice.

His wife deflected the praise and looked at her mother.

“I do what I have to because of who she is, and now I have a whole new relationship with my mother that I cherish” she said, tearing up.

“There is something that is so very special about it.”

David Robinson — 861-9287

[email protected]

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