Cafe designed for those suffering from memory loss

Here is the idea – form a memory cafe so people with dementia can meet and visit with each other over a cup of coffee and goodies.

Renita Thonvold (left) and Kathy Thonvold (right) are the co-facilitators of the new memory cafe in Willmar called Forget Me Knot. The cafe is located on the second floor of the Willmar Public Library. It is open for those with memory loss, including dementia and Alzheimer’s, the second Tuesday and fourth Thursday of each month. Photo by Bev Ahlquist

Renita Thonvold (left) and Kathy Thonvold (right) are the co-facilitators of the new memory cafe in Willmar called Forget Me Knot. The cafe is located on the second floor of the Willmar Public Library. It is open for those with memory loss, including dementia and Alzheimer’s, the second Tuesday and fourth Thursday of each month. Photo by Bev Ahlquist

Kathy Thonvold, of Willmar, said she got a call from the West Central Dementia Family Network asking if she had an interest in this idea. “I had worked with them on a couple panels and was also active with the Act on Alzheimer’s Group in Willmar for a time.”

The two groups combined forces and received a grant from the Minnesota Board on Aging and, as part of that grant, they were asked to start a memory cafe. “Lori Peterson, chairman of the West Central Dementia Family Network, asked if I would be interested in being a co-facilitator of the group. I asked what a memory cafe was.” She learned the memory cafe was started in 1997 by a psychiatrist in the Netherlands who saw a need for his patients with dementia to connect with each other, to have some kind of a social gathering because they became somewhat isolated. He started the cafe, and it spread all over Europe, even to Indonesia and Australia.

“Right now there are about 200 memory cafes in the United States. One of the first ones here was started by Lori LaBey in Minnesota, and she has the website ‘Alzheimer’s Speaks.’”

Kathy, whose mother has lived with Alzheimer’s for four years, started to get involved. “Before she was at the nursing home, they were always out for coffee with friends, and they had these social groups, and I could see as the disease progressed it was harder for her friends to connect to her and have conversations with her. They do become a little more isolated, so the memory cafe was created to really bring these people together in a social setting. They talk a lot about the disease and the things that are affecting them – it really is a very unique idea.”

Kathy said she thinks it’s going to connect a lot folk in our communities, and it’s not just the Willmar area, it’s pretty much countywide, and they hope the area will participate.

Kathy and her sister-in-law, Renita Thonvold, both of Willmar, are co-facilitators of the memory cafe.

“It immediately piqued an interest,” said Renita, who was a state employee for 37 years and recently retired. “Through Kathy’s inspiration and watching her with her family, I could see the greater need. And as we traveled across Minnesota for work, it was also the emotional well-being and social piece I could see missing. It was easy to jump on Kathy’s bandwagon to see the importance of something like a memory cafe.”

The memory cafe gatherings are held on the second floor of the Willmar Public Library. Renita said they have a two/four rule….they meet on the second Tuesday and fourth Thursday at the Willmar Public Library, and it’s from two to four on the second floor. “It’s a lot of twos and fours.”

Kathy said she has gotten a few phone calls from people who are interested and want to find out about the memory cafe. She said Renita had a grandmother affected by the disease, and the group is not just for Alzheimer’s, it’s all dementias of all types. “When we visited the J. Arthur Coffee Shop there were folks there that had traumatic brain injuries, memory issues, Lewy body dementia. It was the whole gamut there, and they do come with their caregiver or their partner.”

The conversation really is about them, and it is their conversation, she said, explaining that the memory café becomes what they want it to become. Some groups do service projects, she said, because a lot of them feel useless. They feel that people don’t depend on them for anything, so they felt like a service project was a good thing. “But it’s just the visiting and connecting with each other.”

But the memory cafe in Willmar, named Forget Me Knot, will become what their participants want it to become, she said, noting they can bring in speakers if they so desire. They also have someone coming in to do music for them, which is a plus. “It’s really for them and about them.”

Renita said what was so intriguing and encouraging during the time they spent at the J. Arthur Memory Café, is the hope that some of the qualities they saw will kind of assimilate into the cafe they just opened.

“It’s that deep dignity and respect for each other, and there’s confidentiality in the group, and with those that had brain changes of different sorts, they noticed that the care partners with them kind of just took that background role,” said Renita. “The people that had the dementia really spoke out, and if they needed some additional help, they’d look to their partner, and they’d maybe fill in the gaps on some details they may have forgotten,” Renita said. “It was just such a lovely supportive system, and as co-facilitators, we truly will be background.”

Renita went on to say another piece that was intriguing for them is how Lori LaBey had an introduction where each person went around and told a little bit of their life story and what was important to them. “After that they chatted about bummers and blessings. They each spoke about some things that had been difficult for them in the last couple weeks since they last met. And also some blessings, some very positive things.” She added, “It allowed the others to see the humanism and the parts that may have been forgotten in some of the more traditional groups.”

Kathy said she attended a support group with her dad and sister for several years and that was mainly for caregivers. “Through the course of those years we’ve seen probably a half a dozen people who have the disease and I often thought it has to be hard for them to listen to the caregivers talking about their issues and just the folks with the disease, kind of become the background. I always thought there needed to be somewhere for them, for the people with the disease, so that’s why I’m really excited about this group.”

Kathy said when they went to J. Arthur, she was very impressed. She said when they shared bummers and blessings, they asked a sister who was the caregiver for a gal with dementia about her blessings “She said, ‘My blessing is being here. This is grace; it’s pure grace.’” They really become a connected group, she said, and that’s why they went with the name of Forget Me Knot for the cafe. “Renita had come up with the name, and we decided to spell it Knot because we’re really hoping that we can become a close-knit group, a knot of friends.”

Refreshments will be served at the Forget Me Knot cafe, coffee, treats and other goodies.

“We will have resources available. We’ll have some books for them to check out if they want to read, and websites with information. She added, “Renita and I are not the know-all, end-all about any of this. If they have questions, we will help them find the resource and the answers, hopefully.”

Renita said attendance at the cafe will grow with time, and people in the community are talking about the great need for something like this. Kathy said they order the goodies from West Central Industries. “And we have great support with the West Central Dementia Awareness Network. They are an amazing group of people that have come together who have a lot of compassion, caring, a lot of passion for what they do.” They work in facilities with folks with different dementias.

Kathy said she doesn’t believe she knows anyone whose life has not been affected in some way or they don’t know someone with dementia issues. “I think there’s more and more need out there and that’s what the West Central Dementia Awareness Network is trying to do.”

Renita said dementia just means brain changes, and there can be multiple reasons – there can be Alzheimer’s with the plaques and tangles, there can be Lewy body where there’s actually Lewy bodies in your brain. It can be from a fall or traumatic brain injury. It can be cardiovascular due to plaques or bleeds in the brain, and those are just a few. There are many, many more causes.

And often times, when you speak to neurologists in the medical field, it’s a combination of things, she said.

“My grandmother had cardiovascular dementia, and she fell down many times, so on top of that, having these little mini strokes, she also suffered from traumatic brain injury. Back then did we know it? No,” she said. “She received the best treatment at that time but now with further knowledge of brain injuries and the abilities to look at brains through spec scans and that sort of thing, you can see the actual changes. So, in the words of one of my beloved patients I get to serve, she stated ‘I have Alzheimer’s disease, the mysterious illness.’”

Renita said so much research is ongoing, and they still don’t know what causes Alzheimer’s. “There are potential reasons and causes, but we don’t know enough and that’s the beauty of having an Alzheimer’s group, and different research people are obviously still doing a lot of work so we’re hoping in our lifetime we can know a whole lot more.”

Alzheimer’s comes on gradually, she said, and the older we get, the more likelihood there is of each of us having some form of brain changes. “We need to pause and allow more connections in the brain as we all age.”

The first thing to look for are some changes and then just watching and being with people.

“It’s very important to get data information from those that are with the people a lot.” One concern they have is that a patient may visit a physician because there are a lot of medical conditions that can cause symptoms that look like dementia or brain changes when it might be related to the thyroid, a urinary tract infection or a whole host of other things.

“It really is not just one specific thing. It’s gathering as much information you can and going to a local physician, and they can often times, if need be, make a recommendation to go to a neurologist, a gerontologist or someone trained in that field. We have tremendous practioners and medical doctors too that have been so helpful in helping make this kind of rule-out diagnosis.”

Kathy said with her mom, the first thing she noticed that wasn’t right was her mom’s cooking. “She was an amazing cook, always made homemade bread. We never had any store bought bread in our house. It was her cooking; all of a sudden she couldn’t remember how to do some of those things, and foods were different, and it was maybe something isn’t right.” Kathy also recalled that when her mom and dad would come to visit, they’d be in the middle of a conversation, and she would all of a sudden get up and say “‘Lloyd we need to get home,’” and they always said, “Mom, gosh we’re having this nice conversation,” but she’d say “No it’s time to go home.” It wasn’t until I read a book called The 36-Hour Day, how that is one of the signs of something being wrong.” They feel the most comfortable in their own home and in their own environment, she said, so her mom was on edge, and it was time to go home. “That was one of the first signs.”

Renita said when you think about any age in time, where do we want to go when we’re tired, overwhelmed, or not feeling well? We want to go home. “That’s with this memory cafe too. We want a home-like feel to it, a home-town feel so that’s why we want the same location, the same decorations, the same pattern and that real comfort of home-like feel so they can open up and feel comfortable is our goal.”

Kathy said they’re hoping this cafe will take off and grow. “The need is out there.” They have some amazing backup facilitators that Renita found, Kathy said, and they’re excited about that.

Renita said they think the people who are going to come through the door are going to come up with the best stuff.  “The one thing too that stands out in my mind is when you go to have coffee with your friends or your family members, who brings their little agenda with the five, 10 items on there. I have to admit for me that’s a little different because that’s how we would have a gathering. This one is truly the ebb and flow for the people by the people and that’s the intriguing part.” There definitely won’t be any agenda, Kathy said.

The coffee is on, and treats are there, and smiles will be there as well, said Renita. “We’re also hoping the humor comes along with the relaxed atmosphere because we all know when people are relaxed, through the hardest times in our life there are times that a bit of humor goes a long way.” Kathy said when they went to J. Arthur they saw that too. “It’s a serious thing, and you have a lot of serious things in your life, especially when you’re facing those issues, but there is a lot of laughter too.”

Renita said it was so great, coming to the J. Arthur group that had been meeting for a while. “The twinkle in each of their eyes, the warmth and the leaning in, just being there was quite amazing, and these are the folks that had dementia, and once you saw them engaging that was forgotten but was so clear was still their honesty on the difficult things they were sharing. They were the most awesome resources for one another.” She said it was so heartwarming how they helped each other with ideas and thoughts. “That was a real piece for me that I’ll never forget.”

Kathy said they’ll do this with a lot of help from a lot of people. Interested people can call Kathy at 320-235-8573 or Renita at 320-212-7086.