Almost every day Jay Mellies leaves his home in Clay Center and drives about 20 miles north to visit his wife at a nursing home in neighboring Washington County.
Some days when he comes in she tells staff, “I don’t know that guy.” Then she smiles. It’s a joke, but Mellies knows someday it may not be. His wife has Alzheimer’s disease.
If at some point she no longer remembers him, he will continue to come, nearly every day, to read to her and listen to her favorite music. They’ve been married 55 years, after all, and he believes others would do the same for their spouses.
“There’s no way you can just walk away and throw them under the bus,” Mellies said. “You’ve got to be there.”
There are about 5.3 million Americans with Alzheimer’s, almost all of them 65 and over and on Medicare.
That number is expected to grow by almost 2 million in the next 10 years as the aging of the baby boomer generation puts more Americans at risk for the memory-sapping illness.
Clay County, population 8,406, is at the tip of that spear.
According to the federal Centers for Medicare and Medicaid Services, 392 of the north-central Kansas county’s 1,770 residents in traditional Medicare had been diagnosed with Alzheimer’s or a related form of dementia as of 2013.
At 22.15 percent, that was the highest recorded rate of Alzheimer’s among Medicare beneficiaries of any county in the United States — just above Florida’s Miami-Dade County.
It’s challenging to pin down why the Kansas county stands out statistically.
Most other counties have more people in Medicare Advantage, privately run plans whose members are harder to track. That could be a factor.
Researchers also believe there’s a genetic component to Alzheimer’s. So if a handful of large families in a lower-population area like Clay County are predisposed to having the disease, it could affect the Alzheimer’s rate.
Alzheimer’s is a tricky diagnosis, and Clay County’s doctors might be better at spotting it than others. The county also has lots of senior housing. According to census data, almost 22 percent of Clay County residents were 65 or over in 2014, compared to 14.3 percent in Kansas as a whole.
Cost to nation
Alzheimer’s disease is one of the costliest chronic diseases to society.
In 2015, the direct costs to American society of caring for those with Alzheimer’s will total an estimated $226 billion, with half of the costs borne by Medicare.
Average per-person Medicare spending for people age 65 or older with Alzheimer’s and other dementias is three times higher than for seniors without dementia. Medicaid payments are 19 times higher.
Nearly one in every five Medicare dollars is spent on people with Alzheimer’s and other dementias. In 2050, it will be one in every three dollars.
— Source: Alzheimer’s Association
Rankings aside, about 5 percent of the population in Clay County has Alzheimer’s or a related form of dementia, which is triple the national rate. Other Kansas counties — all low-population counties with aging residents — aren’t far behind. More than 4 percent of Trego County residents had Alzheimer’s or dementia as of 2013. In Gove County the rate was about 3.7 percent, and in Logan County it was about 3.5 percent.
There will be financial consequences as the Kansas population continues to age and the Alzheimer’s rate grows. A recent study found that the health care costs for treating people with dementia in the last five years of their lives are greater than any other illness.
With Alzheimer’s and dementia, the emotional toll on families also is high.
But Clay County is finding ways to cope.
Like many counties nationwide, Clay County lacks enough skilled caregivers for its elderly population, but it has otherwise largely adjusted to the increase in Alzheimer’s without additional help from government agencies or even large nonprofits.
Instead, Clay County has thrived through a localized “people-helping-people” approach that has produced lessons that may help larger population centers handle the coming Alzheimer’s boom.
An early resource
For many years Rita Wollenberg was the go-to resource for people in Clay Center caring for a loved one with dementia.
Wollenberg recently retired from a long career in nursing. She was relatively new to the profession when her mother-in-law was diagnosed with Alzheimer’s in 1983.
“Which was before they had a lot of information (about the illness),” she said.
Wollenberg educated herself. Then she and another nurse taught a course on Alzheimer’s caregiving to nursing students at nearby Cloud County Community College from 1987 to 1997.
In the middle of those years she joined a local Pilot International Club focused on brain disorders.
“In the process of teaching that class and becoming a member of Pilot Club, I kept saying and thinking (that) we needed a support group in Clay Center,” Wollenberg said.
She helped found that group in 1994.
One of the participants in the early years was Brenda Heeren, whose mother and father developed Alzheimer’s toward the end of their lives.
Heeren works at a law office on Clay Center’s main square, where the county courthouse sits. Talking about those days is still painful for her.
“These are not things you choose to remember,” she said.
Heeren’s father was a farmer, and she remembers him as a big, strong man.
He started to show signs of Alzheimer’s in his 70s. Heeren remembers several times when he would drive his pickup out to go check on cattle and not come home.
Her mother would send a neighbor out to find him.
“Sure enough, he’d be sitting in a pasture somewhere,” Heeren said. “He’d forgotten what he was going after.”
Heeren’s mother cared for her own mother with Alzheimer’s at home until she could no longer do it physically. With Heeren’s father, that was not an option. Like many with Alzheimer’s, he developed anger issues.
“He got real belligerent,” she said. “I don’t know that he would have ever hurt her, but he came awfully close.”
At that time, 20 years ago, there were only three facilities in the area that could take him, and the family didn’t have the time to shop around. They needed the first open bed.
A few years later, the illness hit Heeren’s mother, and Heeren and her siblings started getting frantic phone calls from her in the middle of the night.
By morning, their mother would realize what she’d done and be embarrassed. She made the decision to go to a nursing facility herself.
The family had sold the farm when her dad moved out and divided the assets 50-50 to pay for their parents’ nursing home care.
“Dad went through his half to the month,” Heeren said. “If he would have lived 30 days more, we’d have had to apply for assistance. And Mom well outlived her half. So basically they worked for 57 years on the farm, and it all went to the nursing homes.”
Heeren is 61 now and every memory slip scares her, given her family history. She’s warned her children that if she has to go to a nursing home someday, she won’t go quietly.
“I told my kids I fully intend to be hell on wheels,” Heeren said with a laugh.
Then she turned serious.
“But I also told them to watch and see what we are doing for Grandma and Grandpa,” she said. “We’re treating them the way we would like to be treated.”
If Heeren does develop Alzheimer’s, she and her family will find that much has changed in Clay County in the last 20 years.
‘People are really surprised’
Mike Derousseau, executive director of Clay Center Presbyterian Manor, guides a visitor to the third-floor skilled nursing unit where residents with advanced dementia stay.
About two dozen residents sit in a large room adjacent to the nurses’ station while a staff member leads them in stretching exercises before lunch. Behind them floor-to-ceiling windows provide a view of quiet, tree-lined streets and well-kept houses.
“It’s absolutely the sunniest floor, by far,” Derousseau said.
At Presbyterian Manor the lighting is soft and natural, the floors are carpeted and residents can choose when they eat and how they decorate their rooms.
“A lot of times people are really surprised when they come here,” Derousseau said. “It’s nothing like what they think it is, in a good way.”
The stereotype of the sterile nursing home is slowly being replaced, he said, with an emphasis on “person-centered” care. That’s especially key to quality of life for people with memory issues like Alzheimer’s.
Presbyterian Manor has no designated memory care unit. Residents with advanced dementia likely will end up in the skilled nursing unit. But before their condition deteriorates, they may be on the second floor in assisted living or the first floor in independent apartments.
It’s a continuum of care, and residents of all floors interact with each other and use the amenities throughout the facility.
Keeping people busy and engaged is key to health, Derousseau said, especially if they have memory issues.
“The type of program you use and the training you do is going to be just really crucial,” he said of the growing dementia population. “That’s going to make all the difference in the world. That’s going to reduce psychotropic meds. … You’re not trying to make people behave. You’re just trying to live a normal life like you would in your home.”
People with Alzheimer’s benefit from mental stimulation, which slows the progression of the disease.
But too much noise can be jarring. The carpet at Presbyterian Manor helps dampen it, and employees are outfitted with vibrating pagers that tell them when a resident needs help, rather than audible call buttons.
Small, home-based assisted living facilities also are popping up across Kansas to serve people with dementia who need a lower level of care than skilled nursing.
Roberta Keen and her family have run the Keen Family Boarding Care Home for 25 years in their house next to the country club just south of Clay Center. The Keens have four beds and provide assisted living for seniors who don’t need intense physical care but may need to be reminded to take their medications or eat three meals a day.
Keen said she’s had a number of residents with Alzheimer’s over the years, ranging in age from 55 to 101.
“I’ve had a few that have said if I have to leave here, I don’t want to live,” she said.
The Keens also have a nightly rate for respite care to give family caregivers a break, but they’re only able to do that if they’re down a resident and have an empty bed. Keen said that’s rarely the case these days.
Demand for beds is growing in the county.
Derousseau has not ruled out opening a memory care unit at some point. But it would take more staff. And though he currently staffs well above state-mandated levels, he said he already could use more help.
“That is always a challenge, in terms of hiring good staff,” he said. “Seems like we have a core group of staff that have been here for quite some time, and that part is very stable. And then there’s a smaller percentage that maybe just due to other things, (like) moving or sometimes (leaving for) health reasons.”
“The type of program you use and the training you do is going to be just really crucial. … You’re not trying to make people behave. You’re just trying to live a normal life like you would in your home.”- Mike Derousseau, executive director of Clay Center Presbyterian Manor
Finding home health workers is also a challenge, and that factors into the discussion for families deciding whether it’s time for a loved one to move to a facility like Presbyterian Manor.
While each conversation Derousseau has with those families is different, he said they’re rarely easy. By the time they come to him, most caregivers have been through a lot.
“This is just my opinion,” he said. “When it comes to dementia, I don’t feel sorry for the person who has it as much as the caregivers.”
Jay Mellies knew when he could no longer take care of his wife, now 77, at home.
She had a stroke in April and lost her mobility, some of her sight and her ability to feed herself.
The neurologist from Salina who diagnosed her put her on a couple medications, but Mellies isn’t sure either of them helped.
From his perspective, there was a steady decline in her function in the years following the Alzheimer’s diagnosis five years ago. He was concerned with her driving and watched her struggle to remember how to dress herself. She once left the house early in the morning when he was still asleep and got lost.
“That was before I started locking the door,” Mellies said. “She was across the street at Wendy’s, and I got a call from the police department early in the morning.”
Mellies said the police were kind about it.
The Clay County Sheriff’s Department has adjusted to the growing number of residents with Alzheimer’s — in part by embracing technology.
It’s one of 1,400 public agencies in the United States, Canada and Australia that have teamed with Project Lifesaver International, a nonprofit that provides GPS tracking bracelets that agencies distribute to families with loved ones who have dementia, autism or other conditions that might cause them to become lost.
Only the local agency has access to the frequencies needed to track the devices.
The devices cost hundreds of dollars, but in Clay County the money doesn’t come from the budgets of the families or the sheriff’s office. It’s donated by the Pilot Club.
Each person who has one of the bracelets in Clay County is assigned to a specific officer, who comes out to change the battery once a month. The monthly meetings help the wearers gain familiarity with their officer, which increases the chances of a calm interaction if they have to be found.
According to the Project Lifesaver website, the Clay County Sheriff’s Department is one of only six agencies in Kansas that employ the devices. The others are the Pratt Police Department, Saline County Sheriff’s Office, Westwood Police Department, Douglas County Sheriff’s Office and Fairview Volunteer Search and Rescue.
Mellies was able to care for his wife without GPS and eschewed sending her to respite care as well. He wasn’t sure she’d understand it was only for the day.
“I was thinking about that,” Mellies said. “And it’s kind of a problem, because they don’t understand why you’re dumping them off.”
The stroke took the choice to continue caring for his wife out of his hands, but Mellies still had to make difficult decisions about where to place her.
The list of facilities in the area had grown, and he spent time visiting several. Some of them had memory care units, but he ultimately decided those weren’t the right fit for his wife.
Her condition was not as advanced as most of the people he saw there, and he wanted her in a group that included people without memory conditions.
“My observation is that the dementia units, those people who are in there, they’re pretty comatose,” Mellies said.
He ultimately settled on Linn Community Nursing Home, where all the residents are on the same floor and participate in the same activities.
Benefits of music
Linn also has a program called Music & Memory, which Mellies said has been helpful for his wife.
The program pairs people who have Alzheimer’s with iPods preloaded with some of their favorite songs. The therapeutic benefits of music for people with dementia are backed by research, which found using it to soothe a resident with behavior problems is more humane and less expensive than using psychotropic drugs as sedation.
“That’s one thing with Linn, they’re against giving any drugs to people up there,” Mellies said. “Which I really like.”
The Wisconsin Department of Health Services has adopted the Music & Memory program and sponsored equipment and training for 250 of the state’s nursing homes to implement it.
At Linn, funding it has been a community effort. A local high school raised $750 to purchase iPods and headphones, which the facility gets for $50 per set.
“That can really help out these residents,” said Mellies, who added that he’d like to see the program expand throughout the state.
When he goes to visit his wife, they listen to her music together. Her playlist includes musicals they saw live in their younger years, like “Cats” and “Les Miserables.”
When he reads to her, it’s frequently from books by P.G. Wodehouse, a mutual favorite. He pauses every now and then to ask her questions about the story. Mellies wants her to stay engaged, not just listen passively.
He’s determined to help her stay as mentally sharp as possible for as long as possible.
There were signs of Alzheimer’s before her diagnosis that he now wishes they would have caught earlier, including a couple of frightening fainting incidents and a seizure that temporarily wiped her memory.
She also had family members with Alzheimer’s.
Mellies now advises others who know it’s part of their family history to consider purchasing long-term care insurance and locking in low rates when they’re relatively young. He didn’t do that, but he said he’s financially fortunate compared to others in his situation. He had a long career with Hewlett-Packard and the monthly rates are reasonable at Linn.
Besides, there’s little point in dwelling on the what-ifs and warning signs now, he said. Mellies and his wife will move forward and take on Alzheimer’s together.
“I figure that she put up with me for 55, 60 years,” Mellies said. “I can do this for her in the last part of her life.”