Making Moments

Marriam Hilton (in the black shirt) leads the participants of Adult Day Services in tai chi with her daughter (seated at the bottom left corner). Hilton was one of the original founders of the program, more than 30 years ago. (Photo by Jackie Stark)

By Jackie Stark

In an unassuming room on the lower level of the Messiah Lutheran Church in Marquette, a group of people gets together three times a week for lunch and fellowship. They drink coffee, play games, make art, even go on a few field trips here and there as time permits.

What sets this group apart then, from any other group that gathers together on a regular basis? Everyone participating is living with Alzheimer’s, dementia, or other types of conditions that cause memory loss.

“There are so many more people diagnosed with Alzheimer’s right now, even looking from five years ago, there’s a huge difference,” said Sue Kitti, chief executive officer of Lake Superior Life Care and Hospice, which runs the program. “We know there are a lot more people out there, just reaching those people and letting them know what services there are available.

Called Adult Day Services, the program offers a place for people with varying types of dementia somewhere to be together, and their caregivers a chance to take a few hours for themselves.

Artwork created by participants of Lake Superior Life Care’s Adult Day Services is shown here. Participants do many different types of activities, including painting, baking and musical activities (such as drumming), among others. Their artwork will be showcased at an art show/open house in September. (Photo by Jackie Stark)

Alzheimer’s, the most common form of dementia, affects more than 5 million Americans, according to the Alzheimer’s Association, with some predictions saying that number could be as high as 16 million by 2050. As the sixth-leading cause of death in America, Alzheimer’s kills more than breast cancer and prostate cancer combined.

But perhaps the most shocking statistic is the number of people who care for a person with Alzheimer’s. According to the AA, 15 million people are currently unpaid caregivers for people with Alzheimer’s and other types of dementia, providing roughly 18 billion hours of caregiving worth more than $230 billion.

These are the people Lake Superior Life Care and Hospice is hoping to help, in addition to the people they care for.

“We’re working on more connections with families and caregivers, hoping to do more activities where we bring caregivers in, just to keep them more involved in what their loved one is doing,” Kitti said.

Members of Adult Day Services discuss a bit of good news from around the world. (Photo by Jackie Stark)

“Also, by doing that, the caregivers get to meet other caregivers and socialize, because, of course the participants know each other, but the caregivers don’t know each other, so they don’t have that support the participants get,” added Mary Holkko, Lake Superior Life Care and Hospice’s business manager. “By doing that, it will give them a chance to meet each other and network with each other, and give us a chance to offer educational material in one, big group setting.”

Caregiving can be an exhausting endeavor. Helping their loved ones remember to take their medications, to eat, to bathe and do other normal, daily tasks, these caregivers are often also dealing with the emotional turmoil of a loved one who could now be combative at times, or who is unwilling to participate in his own care. And as the disease progresses, the family members acting as caregivers may find the person they are caring for no longer remembers who they are.

It can be a painful process for both the caregiver and the patient, and taking some respite from the situation can be healthy for both sides of the equation.

***

On a warm Tuesday morning in August, I arrived at the lower level of the Messiah Lutheran Church in Marquette, where I would spend the day with the participants and staff of Lake Superior Life Care and Hospice’s Adult Day Services

The MarqTran bus (which picks up and drops off the program’s participants) arrived shortly after I did, and a trickle of people began to make their way into the room, seating themselves on couches, recliners and rolling desk chairs arranged at one end of the long room.

This group of seven women and two men were certainly a cast of characters.

There’s Bill and Kay, the jokesters. “I’m supposed to be helping out here,” Bill says to me with a smile. “I’m supposed to be, but I’m not.” Kay can’t remember where she put her purse, a fairly common occurrence for most of us. “I forget,” she says. “I have dementia.” Then she bursts out laughing. Later, she would say to me, “If we play BINGO, we get candy. If we play Mad Libs, we get nothing. Write that down.”

Bill, who took off his Army veteran hat, only to put it on sideways, tells us all about creation, with the land and the sea and the animals.

Marriam Hilton (in the black shirt) leads the participants of Adult Day Services in tai chi with her daughter (seated at the bottom left corner). Hilton was one of the original founders of the program, more than 30 years ago. (Photo by Jackie Stark)

“Then God created woman,” he says. “No one has rested since.”

“I’ve heard that before,” Charlie says, offering up a joke of his own. “You know how to make Budweiser? Send him to school.”

There’s Fern, quiet but definitely paying attention, offering her opinion when she feels it’s necessary. There’s Bev, whose dementia has progressed farther than most of the people in the group, but who is looked out for by everyone. There’s Judy K. and Judy S. Judy K. spent most of the day walking back and forth from her seat at the table over to a couch, resting for a minute, and then going back. Judy S. was a sharp one, keeping an eye on the goings on of the room, helping out as needed. Jean and Margaret were quiet, but played BINGO as intently as anyone else, with Margaret helping Janice, who would occasionally take a rest from participating with the group, closing her eyes for a few minutes here and there. Joanne settled into a recliner after first arriving, resting with her feet up and a blanket on. She snoozed through much of the afternoon.

Everyone puts a nametag on. That’s the first order of business. The nametags help alleviate some of the pressure each of them likely feel when they can’t remember something they feel they should, like each other’s names.

Toni Olavarria, who runs the program, greets each person as they are helped down the hall by Ryan Wainio, part of the Adult Day Services staff. She calls out to them as they come in, “Hey there, Jean.” “How’s it going today, Margaret?”

Olavarria handles the room like an old pro, using nicknames and referencing previous conversations she’s had with people, touching each of the group members as they come in, whether it’s a simple squeeze of a shoulder or a full hug.

She then starts the afternoon off with the continuing saga of a fickle mouse that keeps evading capture in her home. The group seems excited to hear how the story ended (not with the mouse’s capture). Then she finds a few good news articles online to share with everyone. The program always starts with coffee and good news.

Olavarria reads a story about a group of people who help a beached manatee back into the water.

“I want to see a womantee,” Bill says.

“You would, Bill,” Olavarria replies with a smile, before reading a story about the Sri Lankan navy, which helped save a drowning elephant.

“Did he have his trunk packed?” Charlie muses. This will not be the last joke of the afternoon.

After the good news, the group moves from couches and recliners to a large, U-shaped arrangement of tables in the middle of the room. This is where they’ll spend most of the afternoon, talking with each other, playing games and participating in planned activities.

With everyone gathered around the table, the staff, which includes Olavarria and two aides, Dianne Brohard and Wainio, gets everyone their lunch.

“Eating together is a really big thing,” Olavarria said. “We all sit down together to eat together.”

This is when the staff kicks it into high gear, getting everyone either the lunch they brought with them, or something from Meals on Wheels. On this particular day, it’s shepherd’s pie.

photo by Jackie Stark

“What do you think, Fernie? You want a peanut butter and jelly sandwich?” Olavarria asks Fern, who is looking dismayed at the day’s lunch menu.

“Yeah,” she says. “You know me.”

“I know you, Fern,” Olavarria replies as she walks around the room, making a point of engaging in conversation with everyone.

Indeed, Olavarria does know each of them. She knows that Margaret doesn’t like fish, and that Bill likes root beer. She knows that Bev will need a little help eating and that Judy K. is probably going to get up a few times during lunch to walk around, so she keeps an eye on the chairs to make sure none of them are in the way of Judy’s walker. She knows them all, their habits and their tendencies. Spending so many hours with them each week, they’ve become a close-knit group.

“They love the fact that they have somewhere to go, and they really all just love being here,” Olavarria said in an earlier interview. “We laugh a lot. It’s very social for them. They’re just so lovely. We’re like a family—they look out for each other.

“(Adult Day Services) just gives them the opportunity to be in a space where they can take their time to do things,” she added. “They’re not being rushed. Here, we just take our time. No pressure.”

Conversations pick up around the table as lunch progresses, with groups of two or three people in each one. They discuss their kids, their respective living situations, their dementia.

“They’re all kind of in the same boat, and so together they can joke about it and make a little bit light of it,” Olavarria said.

Moments that defined eras in history were discussed as though they happened just yesterday. The shocking death of Princess Diana. The disturbing case of Jon Benet Ramsey.

“Have you been following this thing in England with Prince Charles?” Charlie asks, referencing the prince’s relationship with Camilla, before they married. We discuss whether the pair are married today, and eventually have to Google it. (None of us were well-versed in the goings on of the royal family, as it turns out. Prince Charles and Camilla were married in 2005).

Dementia can be a fickle thing. Charlie, who sat next to me for much of the afternoon, told me story after story, occasionally forgetting some words that I would try to help him remember. It’s clear not being able to remember the words tripped him up, and at times, frustrated him. But he remembered with ease that Wainio’s 8-year-old son had visited the group the day before, and he told me all about it.

The musical stylings of Spike Jones and Bing Crosby sparked a few conversations, some unsure if the song on at the time was actually being sung by Bing, himself. At one point in the afternoon, they sang “Moonlight Bay” together. It was clearly an old favorite.

Music is a big part of the program, Olavarria said.

“Music really helps them,” she said. “No matter how quickly they forget, a song can come on, boy, and they can recall and remember lyrics and the tune for it.”

Some of the planned activities during the program include music, with local musicians stopping in to share their time and their talents.

Local percussionist Carrie Biolo teaches a drumming class, and even entered the group (back when it was only women) into a national drumming competition.

“They got kind of primal with it,” Olavarria said.

The group also does a variety of art projects, from painting to tile-making, with local artists coming in to run those classes as well.

Much of this work will be on display during Adult Day Service’s art show/open house, scheduled to take place from 5 to 7 p.m. on Wednesday, September13 at the Messiah Lutheran Church, located at 305 W. Magnetic Street in Marquette. Work done by members of the program will be on display.

“I think (creating art) helps give them a purpose. A lot of them will say, ‘I can’t do this,’ and then they do it, and they’re like, ‘Wow. Look what I did,’” Olavarria said. “It makes them feel like they’re capable of more than what they sometimes give themselves credit for.”

Holkko said the main purpose of the open house is to showcase the artwork of the Adult Day Services participants.

“It’s not about us. It’s about them. We want to be able to let them shine,” Holkko said. “That’s what we’re hoping we can achieve, is letting them shine. In return, it’ll make us shine. Let them shine and let their artwork shine and go from there.”

***

After lunch comes Tai Chi with Mariam Hilton, one of the founders of the program. It has gone through a few iterations since it began some 30-plus years ago at the Presbytery Church in Marquette. Lake Superior Hospice and Life Care took it over from the embattled YMCA in October of 2016, after the Y had been running it for just about a year.

She led the group in some light tai chi, teaching them movements that can be done while seated.

Speaking with Hilton, who is 92, it’s clear she has a passion for this work.

“The big thing always was that it was relief for the caregivers,” Hilton said. “People love the program and they love being in it, but the caregivers really love it because it gives them a chance to get out and do stuff with their peers.”

Next is an impromptu visit from Jane Phillips, part of a knitters group that meets on the main level of the church. Sometimes their meetings coincide with Adult Day Services (which runs from 11 a.m. to 4 p.m. every Monday, Tuesday and Thursday). At those times, Phillips has been known to bring her dog, Bob Barker, down for a visit. And if she doesn’t, well, Bob knows where to go.

“If Bob disappears, we know where he is,” Phillips said.

He makes the rounds, sniffing here, stopping there for some pets and ear scratches. Then they make their exit, until the next time.

The group spent their afternoon playing a memory game, making zucchini bread from scratch (the church allows the group to utilize its kitchen), playing another game with balloons and pool noodles that helped alleviate a little afternoon lull, and then finished out the day with a few rounds of BINGO.

One of the most striking things was how this group of people living with dementia looked out for each other throughout the afternoon. When Bev would get up and start walking away, they noticed, calling out to her, “Hey, Bev. Where’re you going?”  The staff would remind her that it wasn’t time to go yet and she’d sit back down again.

As they played BINGO, those who needed help finding the numbers found it in the people seated next to them. Kay called out a BINGO for Fern, who didn’t see it. Bill helped Charlie place his tokens. Margaret and Janice had the same card, so Margaret made sure Janice’s was covered as she was covering hers.

“They’re very good at looking out for each other,” Olavarria said. “They really care about each other.”

In addition to all of the planned activities at the church, Adult Day Services also takes field trips throughout the year. Examples include a ride around Lakenenland, hosted by the sculptor himself, a trip to the Jacobetti Veterans Home to pass out Christmas cookies they had made, and also a trip to the Upper Peninsula Animal Welfare Shelter to donate homemade animal treats.

“They really do want to give back, you know what I mean? We do try to come up with things like that where they’re being productive,” Olavarria said. “They’re pretty amazing, what they can do.”

As the afternoon wound down, the MarqTran bus returned, marking the end of the day. The slow trickle of people that came in reversed itself, and made its way back to the bus. With help from Adult Day Services staff, they would return home to their caregivers and families.

For more information on Adult Day Services, stop by the art show/open house, scheduled for 5 to 7 p.m. September 13 at the Adult Day Services space inside Messiah Lutheran Church in Marquette, or visit Lake Superior Life Care and Hospice online at lakesuperiorhospice.org.

MM

Editor’s note: This months’ cover art was created by a participant of Lake Superior Life Care’s Adult Day Services program.

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