Three Daughters Find Their Own Special Ways to Honor Their Mothers Who Have 础濒锄丑别颈尘别谤’蝉 Disease

Through fundraising, theater, and the choice to become a geriatrician, these 3 women help their own mothers as well as the greater dementia community.

alzheimers disease
Kieran McAvoy (left), with her daughter, Eimear Faith, and her mother, Jackie (far left); Meghan Everngam (center), at the finish line of the Boston Marathon; and Denise Arribas (right), performing for residents of a memory care unit; all have found ways to support those living with dementia.Courtesy of Kieran McAvoy, Meghan Everngam, and Denise Arribas

Marathoner Meghan Everngam hears the cheers whenever she runs a race.

But the support has been a bit louder since she started running with the End 础濒锄丑别颈尘别谤’蝉 team, a program initiated by the Alzheimer's Association.

Now she runs every race in honor of her mother, Katherine, who was diagnosed with the condition in 2016, and uses her marathon participation to raise money for research.

“The crowds at marathons are always amazing, but the number of people I hear yelling out ‘Thank you for running!’ since I started running with the team is incredible,” says Everngam, who has finished both the Marine Corps Marathon in Washington, DC, and the Boston Marathon.

“You can tell there are so many people who have been impacted by this disease,” she adds. “I am so proud to run for the End 础濒锄丑别颈尘别谤’蝉 team. It’s a privilege being able to represent people living with the disease.”

That community includes more than six million people in the United States who are living with 础濒锄丑别颈尘别谤’蝉 or another form of dementia, a number that’s expected to double by 2060, according to the 础濒锄丑别颈尘别谤’蝉 Association.

In honor of Mother’s Day, here are three women who have decided to take up the cause to help the growing population of people impacted by dementia after their own mothers were diagnosed. Their stories highlight how families and caregivers can improve the lives of loved ones living with the condition.

Putting a Smile on People’s Faces Through Improv Theater

Denise Arribas is a professional actress. So it seemed natural for her to use her talents to boost the spirits of her mother, Ari Acevedo, and others like her living with advanced dementia.

With support from the Alliance Theatre in Atlanta, Arribas formed a performance troupe called Unexpected Encores. The group performs short improv-based shows for people living with advanced dementia in the same memory care unit where her mother currently resides.

According to Arribas, the performances are tailored for people with the condition — meaning they’re designed to be positive and not add to their stress — and can be interactive if the residents are comfortable with that.

The goal is to entertain and engage through jokes, songs, and dancing, Arribas says. There’s even a problem-solving component, in which a storyline may feature a performer having a challenge and asking the memory care residents to assist.

“Giving them a sense of purpose is huge,” Arribas says. “And we bring a lot of positive energy.”

Acevedo was diagnosed with 础濒锄丑别颈尘别谤’蝉 at age 61, five years after she relocated to Atlanta from Puerto Rico to be closer to her children and grandchildren.

Before the move, she had been a professor of early childhood education at the University of Puerto Rico in San Juan for more than 30 years.

If you have the skillset to bring joy to the world, use it.

The diagnosis was certainly hard on Acevedo and her family, but the fact that they all now live in the Atlanta area helps, Arribas says.

One of the first things Arribas did after her mother’s diagnosis was get in touch with the Georgia chapter of the 础濒锄丑别颈尘别谤’蝉 Association. In addition to professional acting, Arribas has worked as a clown in a children’s hospital, so she has some experience providing entertainment and therapy for those who need it.

Still, she consulted with the association about what kinds of performances would work well for people with advanced dementia.

She started teaching theater through the Georgia chapter, and now her group has a grant to organize a performance every other Saturday at the Alliance Theater for people with advanced dementia and their caregivers, starting later this spring.

“I really want to use my pain, and my family’s pain, for good and to help others,” Arribas says. “I think what my story shows is that if you have the skill set to bring joy to the world, use it. That could mean, when you visit, bringing music your loved one with dementia likes and responds positively to or cooking them a favorite meal. Anything to create a connection.”

Providing Care to Other Families Affected by Dementia

Kieran McAvoy was in medical school when her mother, Jackie, was diagnosed with 础濒锄丑别颈尘别谤’蝉. She had always planned to go into medicine — her father is an internal medicine physician in Waukesha, Wisconsin, and her mother was an emergency room nurse before working as the office manager for her husband while raising her five children — but her mother’s diagnosis made her rethink her career direction.

While in training at the Medical College of Wisconsin, the younger McAvoy was paired with a geriatrician, Angela Beckert, MD. In learning about the field, McAvoy administered the Mini-Cog test to her mother, who had been experiencing dementia symptoms.

“She failed and, with her symptoms, she really checked all the boxes for 础濒锄丑别颈尘别谤’蝉,” McAvoy recalls. Dr. Beckert agreed to evaluate McAvoy’s mother, even though at age 64 years, at the time, she wasn’t considered geriatric. The doctor confirmed the diagnosis of 础濒锄丑别颈尘别谤’蝉.

At the same time, the process inspired McAvoy’s life’s work. Since graduation, she has entered the field of geriatrics, treating patients like her mother, and helping their families provide care.

We all need to be able to ask for help when we need it.

Although she only shares her personal story with patients when she feels it will benefit their care, McAvoy says her experience with her mother has “definitely” shaped her practice.

“For one thing, I have a high awareness of caregiver burnout,” she notes. “Caregivers for people with 础濒锄丑别颈尘别谤’蝉 are called the hidden patients, because they often overlook their own health and put off their own medical care to care for their loved ones.”

But “because of my own experience, I make sure to pay attention to caregivers and ask how they’re doing from a physical and emotional standpoint,” she adds. “They’re very appreciative of that.”

Jackie McAvoy is still living in the family home, primarily under the care of Kieran’s younger brother, though the entire family contributes.

Still, as much as that experience informs the care McAvoy offers patients in her daily life, it’s the opportunity “to honor [her] mother” through her work that makes it so rewarding.

It also reminded her of the support system available to people with 础濒锄丑别颈尘别谤’蝉 and their families.

“I tell my patients all the time to utilize the resources that are available to them, like the 础濒锄丑别颈尘别谤’蝉 Association,” she says. “And knowing that the support system is out there is huge, because we all need to be able to ask for help when we need it. For me, it was comforting to know that I wasn’t alone, and I want my patients, and everyone touched by the disease, to feel the same way.”

Racing to Raise Money for Research and Awareness

A longtime runner, Everngam decided to combine her passion for the sport with supporting the cause that has shaped her family since her mother’s diagnosis in 2016.

Her mother, Katherine, was 66 at the time and is 73 now.

She began experiencing symptoms of dementia in 2015, and her health “declined pretty rapidly” after her diagnosis.

Katherine Everngam still lives at home, in Chevy Chase, Maryland, with Everngam’s father, but is no longer able to walk. The family cares for her, along with paid caregivers.

Since 2019, she has been in and out of hospice and, as of this writing, is receiving end-of-life care, according to her daughter.

“Up until this point, my mother has outlived all expectations, but we’re definitely toward the end now,” says the younger Everngam, whose grandmother also had 础濒锄丑别颈尘别谤’蝉. “We’re talking weeks to months now.”

I feel like I’m doing something to help, which is important, because so much is out of your control when a loved one is diagnosed.

Katherine had seen her daughter run in marathons before her diagnosis, so it seemed like a good way to help raise money for research and increase awareness of the disease, she says.

Most recently, Everngam ran the 2023 Boston Marathon, raising nearly $20,000 for the 础濒锄丑别颈尘别谤’蝉 Association.

“In addition to advocacy and fundraising, running has been really therapeutic for me during what has been a stressful time,” she explains. “I feel like I’m doing something to help, which is important, because so much is out of your control when a loved one is diagnosed.”

Everngam acknowledges that not everyone can run 26.2 miles — and conquer Boston’s infamous “Heartbreak Hill” — for 础濒锄丑别颈尘别谤’蝉, but there are lessons for other daughters in her position.

“One thing doing this has taught me is that you’re not alone,” she says. “Millions of people are affected by 础濒锄丑别颈尘别谤’蝉, and there’s support out there, including the 础濒锄丑别颈尘别谤’蝉 Association. I’ve met so many people who have experienced the disease in their families, and that support is so important.”

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