From the time she was young, Carolyn Holtzen has known the impact of Alzheimer’s disease, starting with her grandmother.
“Most of my childhood memories are of her with the disease,” Carolyn says. “And she lived for quite a long time with it, into her 90s.”
Later in life, Carolyn started to notice her mother, Sara, showing signs of memory loss. Carolyn’s father, Paul, chose not to seek out a formal diagnosis, but still took on the role of primary caregiver. While Sara was still functioning at a high level and had learned skills to navigate the disease, Paul filled in the gaps created by Alzheimer’s. Then in 2015, Paul passed away, leaving the family unprepared to fill those gaps.
“It put us in crisis mode,” Carolyn says. “It left us in a position of scrambling to figure out how to manage her care without my father. Her status greatly deteriorated with his death. When there was a stressful situation, a lot of her functioning just went out the door.”
The whole family worked together to ensure proper care for Sara, including Carolyn’s two sister’s and brother.
“It’s been interesting to watch Carolyn’s family deal with it,” says Carolyn’s husband, Mark. “Their different personalities coming together in different ways to support her: knowing when to push, when not to push, how much to push.”
The lack of a diagnosis created a difficult situation for the Holtzens, who were trying to provide care for a family member who didn’t think anything was wrong.
“Part of the reason this has been really difficult is she actually isn’t aware of it,” Carolyn says. “A lot of people get frustrated because they don’t remember something, or they can see the disconnect between what they should know and what they do know; however, she doesn’t see it. You ask her what happened in the morning and she has no idea. She doesn’t recognize that as a problem.”
To ensure Sara got the best care, the family made the difficult decision to move her into Aegis on Madison.
“She didn’t want to go, but she was doing it for us,” Carolyn says. “In her typical selfless fashion and remembering what happened to her own mom, she recognized that the most loving thing she could do for us was to agree to go into an assisted living facility. Without my dad, it wasn’t how the story was supposed to go. It wasn’t supposed to be by herself, but she did it.”
Today, Sara continues to live at Aegis, where Carolyn, Mark and their children visit frequently. Like Carolyn, the children have been made aware of the impact of Alzheimer’s disease early in their lives, and they continue to learn more with every visit.
“In a lot of ways some of the relationships in our family have gotten more joyful with her,” Carolyn says. “Especially now that we’ve moved her to a new environment. Being in the house after my dad died caused a huge amount of stress for her, but now she’s somewhere that allows her to be relaxed and joyful. She’s a warm grandparent with my kids. She tells them how wonderful they are and wants to hold their hand and they’re kind towards her. Everything is in the moment. We’ve been grateful for how it has manifested for her.”
“The kids have been great,” Mark says. “Interacting with Grandma to this day, there are certain questions I can’t ask, so I coach our kids: ‘You can ask, but she’s not going to know.’ What I still love about talking with her is that — while you can’t ask about the day-to-day, or what happened, or how are you’re feeling, or what you did yesterday — you can go profound and I enjoy that. She loves making observations about the world. She loves people. She loves saying our family is beautiful. The weather, just looking around, right in the moment. As her caregivers say, we’re going for moments of joy. There’s something beautiful about that.”
Since getting more involved in Sara’s care, Carolyn has stayed up to date about Alzheimer’s advocacy and research information through the Alzheimer’s Association e-newsletter. Their support of the cause compelled them to join the Walk to End Alzheimer’s.
“Watching her own mother go through Alzheimer’s, my mom had a lot of fear around it,” Carolyn says. “Probably because of the misconceptions about it and what could be done. I think that’s why I’m a big advocate of the Walk — because of that research component and that advocacy component. There’s so much that we can’t do at this point, and I want that to be different. Hopefully for myself or at least for my children.”
While last year was Carolyn and the children’s first Walk, this year Mark will be joining in, as the family walks in Seattle on September 29. Carolyn remembers last year’s Walk fondly.
“It couldn’t have been a better day,” Carolyn says. “I had various friends show up who were dealing with it — and there’s a sense of community, where people come together who are tackling the disease in their own life and within their own families — that was meaningful to me. It was powerful to see that community come together.”
“Didn’t you like the flowers, too?” Mark asks.
“Loved the flowers, it was so beautiful,” Carolyn says. “We put them out in front of our house in a little display, and we put out our Walk sign for a while.”
“Carolyn and the kids came back really excited last year,” Mark says. “I tend to go into these things with zero expectations, but then am surprised at the things I feel. It’s been a very personal thing to watch this all unfold, so I’m sure there are things that I have not considered or haven’t taken the time to step back from and get a little perspective.”
For years, Paul lovingly filled the gaps for Sara that were caused by Alzheimer’s disease. Today, while reflective, Carolyn and her family look forward — forward to a day when Alzheimer’s disease, and the gaps it creates, are no more.
“I think why I originally reached out this year was to change my team name to Better Together,” Carolyn says. “Because I think that was a big takeaway from the Walk last year. It’s a lot for someone to do alone and it’s better for us to help each other and lean on each other. Within my family and my siblings, we’ve navigated this with in-laws and friends. It’s an all-encompassing disease when it hits your family.”
Join the Holtzens and the thousands in Washington and Northern Idaho for the Walk to End Alzheimer’s. Register today at alz.org/walk or call 1.800.272.3900.
Support the Walk to End Alzheimer’s by joining the 2018 Walk Match Challenge and double your impact! Learn more and join before the challenge ends Friday, August 25.