Alix Welch, a Center Grove area resident, hugs her dad Jim Green during her wedding. Green was diagnosed with Alzheimer’s disease in 2018, placing Welch in a role as a caregiver for him. He died in 2023 and since then, Welch has been sharing her experience to raise money and awareness. SUBMITTED PHOTO
She was too young to be going through this.
Alix Welch knew that at some point, she’d be needed to care for her parents as they grew older. Alzheimer’s disease and dementia run in her family, and as she had seen other family members struggle with it, so she prepared to deal with it someday.
But the Center Grove area resident never expected to start that journey in her late 20s, when her father, Jim Green, was diagnosed.
“I felt like, I’m not old enough for this. I didn’t know what to do. You expect your parents to get older, but I’m not old enough for them to be going through this,” she said.
The experience opened Welch’s eyes. Now, she wants to ensure other people don’t go through the same experience. The 33-year-old started a fundraiser to support the Alzheimer’s Association, a nationwide nonprofit focused on accelerating global research, driving risk reduction and early detection, and maximizing quality care and support.
Almost as importantly, she has been sharing her story to give hope to other patients, families and caregivers who feel alone dealing with Alzheimer’s and dementia.
“Alzheimer’s can be a very lonely disease, for the people with it and the people caring for them. It doesn’t need to be; 6 million people in the United States are diagnosed with this, so there are a lot of people who are going through the same thing,” she said. “You’re not alone. It’s important for me to let people know that.”
Alzheimer’s disease runs in Welch’s family; in addition to her father, several other family members have been diagnosed over the lives. She remembers when her great-grandmother was diagnosed and moved into an assisted living facility on her 16th birthday.
So when her father was diagnosed with Alzheimer’s in August 2018, she had a baseline of what the experience would be like.
“He was experiencing what they called, ‘significant cognitive decline,’” she said. “Initially, he was diagnosed with Alzheimer’s, but that was modified shortly thereafter to Alzheimer’s with Lewy bodies, which is another variety of dementia.”
Dementia with Lewy bodies is a type of progressive dementia that leads to a decline in thinking, reasoning and independent function, according to the Alzheimer’s Association. Features of the disease may include spontaneous changes in attention and alertness, recurrent visual hallucinations, REM sleep behavior disorder, and slow movement, tremors or rigidity.
Many of the symptoms mimic Parkinson’s disease, Welch said.
After Green was diagnosed, Welch’s parents moved from Greencastle to Greenwood, where they all lived together under the same roof in 2019.
“We were there together for the lockdown. We spent every day together, which was a blessing but also a little frustrating,” she said.
In their time living together, Welch watched as her father slowly declined, though for years, he was able to maintain doing his daily tasks. He really enjoyed mowing the lawn, so he did that a lot, she said.
But over time, he had increased difficulty managing the steps in their home and moving around the house.
“It was a lot of monitoring and making sure he was safe, all the time,” she said.
The experience illuminated for Welch how difficult being a caregiver to someone with dementia or Alzheimer’s disease can be. She had been the one watching over her father while her mother went to work.
But while on family vacation, she understood the weight the constant monitoring had.
“I realized how much mental space was reserved for that,” she said. “When we got back, we felt it would be best for him to move into assisted living.”
On Father’s Day weekend of 2022, Green moved back to Greencastle into an assisted living facility. He thrived, becoming president of the Residents’ Committee at the facility, and overseeing landscaping in the garden. Welch is thankful he was able to spend the final year of his life interacting with other people in the town he knew so well, she said.
But in April of 2023, Green fell and hit his head. He died on May 13, 2023.
“It was very sad, but also sort of a relief. The disease had progressed significantly. There were hallucinations, there were gaps in memory, it checked all the boxes,” Welch said. ”But thankfully, it didn’t get to the point where he didn’t recognize us, he didn’t recognize himself. We didn’t get there.”
Still, the death of a parent can have a profound impact on people, and Welch was no different. In her career with Anthem Blue Cross Blue Shield, she supports the Indiana Medicaid population of older adults.
She felt compelled to do something big to benefit that population of Hoosiers.
“That population is my dad. He would have fit into that group perfectly. He was on Medicaid, he was a Medicare recipient, he was on long-term services. He checks all of those boxes,” she said.
Every year, Anthem partners with the Greater Indiana chapter of the Alzheimer’s Association on their annual Walk to End Alzheimer’s, and Welch has been active in the fundraiser. There, she learned about another effort to raise money called The Longest Day.
The idea behind the Longest Day was to create a fundraiser on the longest day of the year — the summer solstice. “Shine a light on the darkness of dementia” is the event’s slogan.
“It’s our second-larges fundraising campaign we have, outside of the Walk to End Alzheimer’s,” said Laura Forbes, communications director for the Alzheimer’s Association, Greater Indiana Chapter. “It’s really a way that people can participate in fundraising in whatever way they choose — kind of a do-it-yourself fundraiser.”
Welch felt it was ideal for what she hoped to do.
“It was a casual thing I just started on Facebook; I was going to force all my friends and family to donate to it,” she said. “But I mentioned it to someone at work who mentioned it someone else and down the line, and it’s taken off.”
Welch has been using The Longest Day campaign to raise money, but also to spotlight for people the resources available for Alzheimer’s patients, family members and caregivers.
She has been directing people to the Alzheimer’s Association webpage, where a full listing of programs such as a 24-hour helpline, area support groups and opportunities to consult with an expert about care can be found.
“There are support groups, there are lists of activities that you can do with your loved one with dementia to make them feel less lonely or keep them happy,” she said. “They have a ton of resources there.”
Her experience in the Medicaid and the insurance industry also made her aware of information, resources and help available through private insurers for families struggling with Alzheimer’s disease.
“I would encourage people to check with their insurance company to see what kind of resources are available,” she said. “They have resources available to them. I had no idea; I worked for Anthem and had no idea you could utilize these resources.”
AT A GLANCE
The Longest Day
What: A fundraising campaign built around the day with the most light — the summer solstice, this year happening on Thursday. People are encouraged to create or donate to fundraising activities of their choice on a day that works for them.
How does it help: The funds you raise advance the care, support and research efforts of the Alzheimer’s Association.
How to donate: Go to alz.org to find causes to donate to, or start your own. People can search for fundraisers, as well. For example, Alix Green, a Center Grove area resident who created a fundraiser in honor of her dad, Jim Green, can be found on the Longest Day site by searching “Alixandra Welch.”
