Group homes fill need for loved ones with Alzheimer’s

It didn’t start out as a tradition.

Every Thursday for more than 4 1/2 years, I’ve been having lunch with my grandma, mom and daughter. When we started — back when my daughter, Brynn, was just 3 weeks old — it was just a way for a tired new mom to get out of the house. But it didn’t take long for our four-generation lunches to become a regular part of our week, and to transform into something much deeper.

These lunches haven’t always been easy to pull off. During our first few outings in 2011, Brynn would cry or need one of us to walk her around the restaurant. They were also a challenge for my grandma, who had been diagnosed with Alzheimer’s disease in 2005 and needed a little extra help getting ready to leave the house or selecting her meal from the menu.

But week after week, despite all the challenges, we kept showing up. A few lunches turned into a few years’ worth of lunches, and I watched as the bond between the women in my family — particularly the powerful bond between great-granddaughter and great-grandmother — continued to grow.

This summer, however, my grandmother’s disease began to claim more and more of her abilities and memories. Walking became difficult. Eating was increasingly a challenge, and she slipped further away from us cognitively.

The interests and memories that once defined her were gone. Her favorite color, purple. Her love for animals. She could no longer garden, or sew, or visit the beach. And we realized that she could no longer stay at home with my grandfather and the help of a part-time in-home caregiver. She needed something more.

Deciding where to move the beloved matriarch of our family was an overwhelming challenge, until my mom stumbled upon an option we never knew existed: a memory care group home.

Prairie Elder Care, a ranch-style brick house nestled within a residential neighborhood in south Overland Park, looks like any other home on the block. But the interior had been designed specifically to meet the needs of eight residents struggling with memory issues.

My mom said she knew the moment she walked through the home’s front doors and met its owners, a registered nurse and former elementary school principal, that this was the best place for my grandma.

Group homes for seniors are becoming increasingly common in the community on both sides of the state line. According to information provided by The Alzheimer’s Association, there are 12 small-group homes focusing on memory care in Johnson County, and two homes located in the Missouri side of the area, with one in the Northland and one in Blue Springs. There are plans to open a second home in the Northland this spring.

These group homes are designed to feel and function more like traditional homes, where much of the activity is focused around comfortable living rooms and large kitchens. Residents can eat home-cooked meals together, sit outside on the patio, or take afternoon cat naps in living room recliners, all while under the supervision of certified nursing assistants and registered nurses who help the residents with their daily care routines and ensure each resident receives the right medication.

With low patient-to-staff ratios, these small group homes try to personalize care by finding ways to connect with each resident.

The goal “is to help them and their families find the celebrations that are still in life,” said Mandy Shoemaker, co-owner of Prairie Elder Care.

Sisters-in-law Michala Gibson and Shoemaker opened Prairie Elder Care in the summer of 2014, with one eight-bedroom group home located at 15354 Quivira Road in Overland Park. This fall, the pair opened a second eight-bedroom home just down the street, after seeing increasing demand at their original location.

For Gibson, caring for dementia patients was a calling she found early in life.

“My first real job was as the juice girl at the nursing home in my small town,” Gibson said. “I was 15.”

It was there that she fell in love with caring for the patients, and because it was a small town, she was often able to connect to the dementia patients she helped serve on a deeper level.

“A lot of times people see just the disease, but I could recognize them as the lady that used to sing in the choir at church, or my friend’s grandma. You could identify with them as that person, not just what you get on the outside,” she said.

She’d later go on to nursing school and spent time working in a hospital setting, but said she missed the personal connections she had been able to form with her patients. She returned to long-term care, serving as charge nurse, house supervisor and director of nursing before embarking on her own.

“I love working with the elderly and specifically people with dementia because they don’t have their own voice,” she said. “There’s so much loss, but if you take the time to make that connection, it’s so rewarding, and that feeling for both of you really sticks around. The person with dementia might forget what made them happy, but they still have that warm, fuzzy feeling.”

Shoemaker was a school principal for nearly 10 years, but said she was looking for a change. After talking with Gibson at a family gathering, the two decided to join forces. They first created their own consulting company to help people place their loved ones in care settings, but soon decided they wanted to open their own small group home.

The end result is an updated home with individual bedrooms for each resident. The common area includes a large, comfy couch, several recliners and a brick fireplace. Pastoral pictures of cows and chickens painted by one resident’s daughter hang on the walls. The back of the house is lined with windows that overlook a deck and patio furniture.

The external doors of the house are always locked, but families are given their own key cards which they can use to enter the building. There are no official visiting hours.

Gibson’s office is also located in the home, and two certified nursing assistants are always on duty to help care for the eight residents.

“Our caregivers don’t have as many people to take care of, so when they are providing care to somebody, we want them to slow down and talk to them and make it an enjoyable experience, not just a task that needs to be completed,” Shoemaker said.

Trish Frederiksen’s mom, Marilyn Sandholm, who had Parkinson’s disease, was Prairie Elder Care’s first resident.

Frederiksen said she was often there visiting her mom for eight hours a day and was able to see first-hand the quality of care each resident received.

“The care that they took with each resident that moved in was just amazing,” she said.

Staff members knew her mom liked to be outside, so they’d often have meals outside on deck and grill out or would bring in one of her mom’s favorites, fresh fruit.

“She was so happy there. I mean, at the end, I would say, ‘What do you want?’ and she’d say, ‘I have everything I need here,’ ” said Frederiksen, whose mother died about six months after moving in.

Prairie Elder Care works hard to make personal connections with the residents.

For example, one resident always had a routine of checking the mail at home, so Shoemaker’s husband installed a small mailbox inside the fenced backyard. The staff would often put notes and mail in the box for the resident to retrieve.

A former resident always loved to be made up, so each day, one of the staff members would put on her makeup so she could feel like herself.

One resident, who used to be famous for her pies, now helps with some of the baking tasks in one of the homes, while another resident is known for her love of word games.

“I think that’s what it is, it’s just finding what it is for that person,” Gibson says.

More than two decades ago, John Higgins, president of Galway Homes, opened his first group home to serve dementia patients in Prairie Village after being unhappy with the care his grandmother received in a nursing home in her hometown. He said although it was a nice facility, he didn’t think it had the number of staff necessary to fully address each patient’s needs.

Although his background had always been in the oil and gas industry, his mother encouraged him to find a better way to care for seniors struggling with memory loss and dementia.

“Mom helped people when their parents were going though this, and she said, ‘You need to start a home — you know, this could be done as a business,’ ” he said.

His mother assisted by doing the interior decorating in some of his earlier homes and regularly giving talks about family member grief before she passed away.

More than 20 years later, Galway Homes now operates two Johnson County-based homes and one home in the Northland. The company plans to open a second group home in the Northland this spring.

Higgins said one thing he believes distinguishes the group home setting from other large facilities is the staff-to-patient ratio. In Kansas, he has a staff-to-patient ratio of 2 to 5, while in Missouri that figure is 2 to 7 in his home at 5000 N.W. Old Trail Road in Kansas City, North.

By having a smaller staff-to-patient ratio, he said, care is more personalized, residents are able to get their personal and medical needs met, and his employees are happier.

“We’ve got staff that have been with me for years,” he said.

Northland resident Sandy Nelson moved her aunt to the Northland group home about two years ago after her aunt, known as Mary K., was no longer able to stay in her assisted-living apartment.

Nelson has been very pleased with the group home and said she loves the high level of communication the staff regularly has with her and the activities her aunt is able to participate in without ever leaving the home.

“I feel extremely fortunate that we were able to find this place for Mary K., because she’s not a patient, you know — she’s a resident. I don’t know, I just feel like there’s a higher level of dignity and attention,” Nelson said.

Although each resident has his or her own individual bedroom, Higgins said he believes the residents should spend most of their time during the day in communal areas of the house where they can be part of typical daily activities. Residents also participate in music therapy, group exercise and games such as bingo.

“If you think about it, in a home, you are smelling the cooking, the vacuum cleaner is going off and things like that, reading the newspaper, listening to music from the old days. You can’t get that in a facility,” he said.

The newest Galway home that will open in the Northland in the spring will have six bedrooms, wide hallways, a large, homey sitting area, and big kitchen with an island.

While group homes present an alternative care setting for patients with dementia and memory loss, they may not be the best option for everyone.

Michelle Niedens, director of education, programs and public policy for the Alzheimer’s Association Heart of America Chapter, said finding the right care setting for a person with Alzheimer’s is often more about meeting the needs of that specific person.

“We are often asked by families what’s the best facility, and there is no such thing as the best. There’s the best for this one person,” she said.

Small group home settings may work well for people who feel an assisted-living facility is too large, or who may want to retreat from group activities, Niedens said.

“There are environments where it’s easier to be in your room for expanses of time, and it’s much harder to do that in a group home, so it really pulls out some of those individuals who are struggling with depression or other things that might limit their willingness to partake in the environment as a whole,” she said.

Due to the small number of residents, Niedens said the staff also gets to know residents in a different way and might be able develop a close relationship with the resident so they can look beyond specific behavioral issues to focus on the person instead.

“The downside is the fit,” she said. “There are only five to eight people, so if you do not fit, you don’t have the diversity of experiences.”

She also said there often isn’t the formality of activities in a group-home setting, and that some people may benefit from a more structured routine.

“Some people need lots of activities and high structure and alone time, and some people need small environments, and some people need outside, so we always work with families in trying to ascertain what are the variables that make life worth living for this person,” she said. “Sometimes that translates to the group home model; sometimes that translates to a nursing home; sometimes that translates to an assisted living.”

For my grandma, our family found the group home setting to be a perfect fit.

After settling into her new surroundings, she was able to find a joy she hadn’t seen regularly for a while. The staff read her picture books filled with photos of our family, and once they discovered her love for sewing, they would put a special sensory blanket on her lap that allowed her to fiddle with buttons and zippers.

My mom, daughter and I were regular visitors. We were even able to continue our weekly Thursday lunch tradition, bringing in food from our favorite restaurants and enjoying our meal together outside on the patio, or at a small round table off the living room.

My daughter never thought of this place as cold or frightening. She did puzzles with some of the other residents, participated in craft projects, and sang during the sing-alongs of old music. She even asked me to take a photo of her and one of the other residents to hang on her bulletin board in her room at home. Most importantly, she continued to grow the unique bond she shared with her great-grandmother.

It became a place of comfort not just for my grandma, but for my family.

Earlier this month, my grandma had her final Thursday.

Her brain could no longer remember how to swallow. Unable to eat or drink any longer, she was placed on hospice, and our family began making increasingly frequent visits to see her.

I remember how peaceful it was at the house her last night. There was no beeping of machines or stark white walls. Instead, she was wearing her cozy jammies, quietly listening to her favorite music, surrounded by pictures of her family.

The staff, who had become our friends over the last few months, took great care to make her as comfortable as possible. They had even taken the time to comfort me a few days earlier, when the reality of the situation became too much for me.

My grandma died just a few minutes into Friday morning, having spent her last Thursday with those who loved her most.

Tomorrow, we’ll head to lunch like we’ve done so many Thursdays before, this time as a party of three.

“Maybe we should all wear purple,” my mom said.

This story was originally published November 17, 2015 at 11:00 AM with the headline "Group homes fill need for loved ones with Alzheimer’s."