When Stephanie Aasness' mother Mary Waldorf was diagnosed with Alzheimer's Disease in 2013, the Alzheimer's Association was there to help the family through this difficult time.
Now, Aasness is giving back, by facilitating a support group for Alzheimer's caregivers.
Her family also is the honorary family at the Alzheimer's Association's Walk to End Alzheimer's, which is taking place on Saturday, Sept. 11, at the Alexandria Area YMCA.
"I'm more than excited to be a part of the Alzheimer's Association," Aasness said. "A goal of mine this year was actually to get more involved in the Alzheimer's Association and be able to make an impact for families that have gone through or are going through what we're going through. I'm excited to see where the rest of this year takes us, and I'm ready to open my door to whatever comes my way."
There had been a similar support group in the past, but attendance had fallen off because of the pandemic.
"A group of us decided that it was probably time to get something going back in the area, and so we went through the training process to become group facilitators," Aasness said.
The group will meet the third Tuesday of each month, starting this month on Sept. 21.
Aasness said she is very excited to get it going.
"Ever since my mom's been diagnosed, it kind of became my own personal mission to try to make it easier on families who have to go through what we went through and are going through," she said.
Although Aasness' mother Mary Waldorf was diagnosed with Alzheimer's in 2013, she had been showing symptoms since 2011. She is now completely unable to walk, and she depends on others to attend to her day-to-day needs, such as eating, bathing, dressing and repositioning.
Through that time, Aasness said the Alzheimer's Association has been the support of her family, which includes her father and three sisters.
"We started attending after my mom was diagnosed," Aasness said. "We started going through some facilitations where they would walk us through what each of us were going to go through as far as how we were going to lose our mom, how we were going to go through the loss."
The group showed "how each of us were going to have a different experience on what that loss would look like, because of the relationship that we had with our mother, as well as my dad losing his wife slowly every day, too."
The impact of these sessions was "huge," Aasness said.
"It opened up a lot of hard conversations that we had to have, and so I'm forever thankful for the Alzheimer's Association for having that program," she said.
The family also attended Meeting of the Minds events, which are held annually in the Twin Cities.
"They would bring in Mayo doctors, people from different communities that suffer with dementia and Alzheimer's, all the different variations of dementia, and that was just kind of a way for us to educate ourselves, as well as feel like we're not alone," Aasness said.
Attending these events and meeting these people could be an emotional experience, Aasness said.
"Everybody has a different story, and so at first … we didn't really meet anybody with a story similar to ours, just because our mom was so young," she said.
Her mother turned 64 in February.
"At first there was kind of that sense of aloneness, but they do have an Alzheimer's support group for younger caregivers, and we jumped on that Facebook page and found some support in that," Aasness said.
Early-onset diagnosis of Alzheimer's has become more common over the past 10 years, however, she added.
"Unfortunately, if you were to do any Google search on early-onset Alzheimer's, there's quite a few people that are actually even younger, into their 40s, that are showing the signs of early-onset Alzheimer's," she said.
Aasness said she has two pieces of advice for families who are going through situations similar to hers.
The first is to value time.
"Time is so valuable every single day, so just taking those moments and really being there, being present, making a memory has been the biggest thing that we have taken away from my mom being diagnosed," Aasness said.
The second piece of advice is to make plans.
"We did a lot of planning in the earlier stages, and although those conversations were really tough to have, like right now with her being in her final stages, we are able to just be there for her," Aasness said. "We don't have to worry about funeral planning, we don't have to worry about should we do hospice. All those conversations have been had, so when they come up, we're ready to just tackle them as a family with love and not in an argument or something spiteful."
Aasness' family will be on-hand to tell their story at the Walk to End Alzheimer's on Saturday.
Participants can walk in their neighborhood, or via the official mobile app, or in-person following provided COVID safety protocols. Check-in is at 1 p.m., and the opening ceremony is at 2 p.m., with the walk to follow.