Karson Barenholtz: award-winning granddaughter

What’s in a name?

The daisy flower is a perennial with one composite head supporting several petals. Blooming in groups, their beauty can be observed collectively or individually, perhaps placed behind one’s ear. The Daiseys are a family in the Cape Region led by Jimmy and Doris Daisey, who spent a lifetime supporting several loving children and grandchildren. Similar to the flower, the family works great as a group, but can also shine independently. When the storm clouds of Alzheimer’s came rolling into Doris’ life, one of her petals, granddaughter Karson Barenholtz, knew it was time to provide a little shelter from the rain.

Karson’s mom, Margie Daisey, had her at a young age. The first place they lived was with Doris, bringing the women close together and creating a special bond. Even after Margie and Karson moved out, Karson preferred to spend her summers with her grandmother and visit her as often as possible. Accepted and attending East Carolina University, college took her down to North Carolina. There she would meet her husband, Daniel, and eventually start to settle into a life down there. Thunder rumbled.

“When we found out about her diagnosis, my husband and I were just kind of like, ‘we have to move back,’” Karson said. “I couldn't imagine anything happening to her.”

The move brought her within a five-minute drive of Doris and closer to the rest of the family. A movement was happening within the family. The petals began to brace for the periodic storms the devastating disease brings about.

“When I got my diagnosis, I thought, ‘oh well, that's it,’” Doris said. “And then after my family and friends started rallying around and Karson made that move, I thought, ‘it's not the end for me. I have to do this for them.’”

Doris stepped into her fight with a mighty support system fueled by the love of her family and friends. The petals had become the protector and this Daisey began to roll with the thunder. 

“She still lives with her husband; we’re thankful my Pop Pop [Jimmy] is still around,” Karson said. “He manages her medications and I usually try to take her to her doctor’s appointments.”

The appointments are difficult. Doris has a lot of doctors to see and scheduling them can become complicated. Karson and the rest of the family play a key role in managing the care plan and making sure Doris engages in healthy activities. While the doctors consume a lot of time, the family plays cards, goes on walks and prepares meals with Doris to keep her active.

Karson credits the Alzheimer’s Association Delaware Valley Chapter with providing support for the family and, she said, she believes their research is really making a difference. Recently, the U.S. Food and Drug Administration approved a treatment for those in the early stages of Alzheimer’s. Lecanemab is an option for people with mild cognitive impairment or the mild dementia stage of Alzheimer’s. It is the second drug approved to change the course of Alzheimer’s by slowing its progression. Unfortunately, Doris has progressed beyond this stage, but does that still bring her joy?

“Sure, it does,” Doris said. “To know that eventually someone will be cured from this disease.”

Karson maintains an active role in the Alzheimer’s Association as both the co-chair of the Rehoboth Beach Walk to End Alzheimer’s and a community educator. She manages the social media for the walk and educates interested communities. Her informative programs run 30 to 60 minutes, covering topics such as the warning signs of Alzheimer’s and how to handle the financial aspect of the situation.

Her work in the nonprofit was recognized Dec. 1, 2022, in Wilmington by Gov. John Carney, who awarded her with the 2022 Governor’s Outstanding Volunteer Award. She and Margie began volunteering for the organization after Doris was diagnosed a little over two years ago. Karson said she is always learning about the disease and ways she can be helpful to her grandmother.

Patience is a virtue and when caring for someone with Alzheimer’s, Karson said, it is vitally important. Sometimes Doris may forget some information and engage in a similar conversation about the topic. Karson said she has no problem having the conversation again and thinks it’s important for all caregivers to be on the same page with the respectful approach.

“There's good days and bad days,” Margie said. 

Doris is aware of her good days and bad days; she and others with the disease should not be mistakenly treated like children.

“I know when I get up sometimes during the day, my head just swirls,” Doris said.

When she begins to recognize it might not be the best day, she tries to nap or calls the girls to have a conversation and explain it might be a bad day. Doris notices that eventually things clear up.

A silver lining has been the memory recall Doris has had and stories she tells her grandchildren. Although Karson has been close with her grandmother her whole life, she did not know things like the apple tradition Doris’ mother had during the holiday season.

“I think of her from the minute I was born,” Karson said. “She had a whole life I knew nothing about.”

Doris enjoys talking about her past memories, looking at videos and combing through old family pictures. Karson said Doris identifies the people in the photos and provides the occasional story on the captured moment. 

Karson will continue to support her grandmother in a variety of ways as researchers continue working to find a cure for the devastating disease. She encourages people dealing with Alzheimer’s in any capacity to go to alz.org or call 1-800-272-3900 and be as active as possible with themselves or loved ones. Doris has a message for anyone going through the disease themselves.

“I hope people can realize that there is help out there for them and support. Don't be embarrassed because you have it.”