Navigating memory loss at the Memory Cafe

- Marian and Larry Heinz have been walking through life together for 49 years. Their foundation is built on two mottos: "keep busy" and "keep their sense of humor."

"I was fixed up with somebody else and he was fixed up with somebody else. We ended up getting together," said Marian.

"She forced herself on me," said Larry, jokingly. 

Marian and Larry, better known as "Tiny," love to talk about the good old days. They take those walks down memory lane because those are the days Tiny remembers best.

"That very day she told us it was mild cognitive impairment," said Marian. "Probably Alzheimer's. So that was August 13, 2013. You don't forget those dates."

It was a devastating diagnosis that would be difficult to explain to friends and family.

"I just thought everyone would look at him differently because like you say you get that picture of Alzheimer's and you get stereotyped," said Marian. "All of a sudden he turned dumb. And he certainly isn't dumb."

Tiny is in the mild to moderate stage of Alzheimer's. His long-term memory is still sharp, but his short-term memory drops out. Marian recalled one of the experiences that made her realize something wasn't right.

"I could see him on GPS and I thought, 'Oh he missed his turn,'" she said. "And he ended up driving around and turning around because he just could not find the right exits."

"It was kind of frustrating because I thought I still knew what I was doing, but in the back of my head I knew I didn't know any more," said Larry.

Five years after the diagnosis, they're still adjusting. They still laugh a lot and try to keep busy.

"We put the date on [the whiteboard] and then put the day's schedule," said Marian. "If he knows what's going to happen he doesn't remember, but if it's on the board it works really well."

They've also had to navigate the emotional side of dementia. Frustration. A loss of independence. Downsizing their entire life. They've learned a lot and now they're building a bridge for others walking the same path.

A few years ago, Marian and Tiny connected with the Anoka County Family Caregiver Connection, hoping to start a support group. Then, they got their church on board and together they created a safe space for those battling dementia and their caregivers.

About twenty people meet at Memory Cafe at Faith Lutheran Church in Coon Rapids twice a month. Some have been coming for years, other are just testing the waters. 

In just a few short years, the federal and county-sponsored, church-supported program has changed the lives of dozens of people. Donna and her husband David are regulars at the Memory Cafe. Donna doesn't fit the Alzheimer's stereotype. She's just 58 years old, diagnosed when she was just 53. Her husband is now her caregiver.

"It's hard to explain, but your brain is just like mush with nothing up there and it's hard to carry on a conversation anymore," said Donna.

Donna rarely talks, but when she comes to the Memory Cafe, David says she finds the confidence to open up and he gets to hear from his wife, who is still very much inside that shell.

"Oh, I don't know what I'd do if I didn't have him by me all the time,” she said.

"There's a lot of reluctant people in our group who are really grateful that they came and just the camaraderie of our disease and I call it ours because it is ours," said Marian.

And that's what sets the Memory Cafe apart. It's for both the diagnosed and the caregiver. It's time they can spend together, sharing without judgment and working on projects that stretch the corners of their minds.

"It's so important for me to put myself in these scary places where I just want everybody who's sitting at home to come and join us," said Marian.

Because while it's nice to walk down memory lane together, the best part of of memories is in the making, not the remembering. 

If you'd like more information about Memory Cafes in Minnesota click here. If you'd like information on how to start a Memory Cafe you can contact Jill at the Anoka County Family Caregiver Connection at 763-324-1608.

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