Jeanie Greenwell wears her advocacy on her back. Literally.
Even when she’s off duty from her job as a registered nurse at Carmel Manor, Greenwell is usually dressed to the nines in a purple ensemble with her Alzheimer’s awareness bracelet on her wrist and an Alzheimer’s insignia pin attached to her shirt.
While working in the care facility for Alzheimer’s and dementia patients, she’s in purple scrubs adorned with her stethoscope, thermometer, and blood pressure cuff, all in the signature purple of the Alzheimer’s Association.
The Alzheimer’s Association describes the disease as “a type of dementia that affects memory, thinking, and behavior. Symptoms eventually grow severe enough to interfere with daily tasks.”
Greenwell has her Master of Science in Nursing and is board certified in Gerontological Nursing, which is the study of aging processes and individuals throughout life. Most of her career has been dedicated to geriatric sites. Before coming to Carmel Manor in June 2022, she worked at Good Samaritan Hospital and Highlandspring of Fort Thomas.
“It’s a profession that you really have in your heart and soul and has to be your passion,” Greenwell said. “Especially with Alzheimer’s, because there’s no predictability in the disease, and you just go through a range of ups and downs. And you really have to have patience, care, and wherewithal to provide for their needs and to positively affect their lives however you can.”
While at Good Samaritan, Greenwell was one of four nurses who took care of roughly 27 patients. She said she was drawn to dementia care units because, like her job at Carmel Manor, she is the only nurse for a maximum of 16 patients, which allows her to understand them better.
She said she tries to investigate their background and talk to their families as much as possible.
“I’m a very logical thinker and empathetic person,” Greenwell said. “What I teach others is to really learn the resident or the patient. Trying to figure out what time they start getting upset, what time is a good time for them, or when they appear drowsy. You notice every little thing about them so that you can interact with the doctor and really figure out their best treatment plan.”
Greenwell said that working during the heart of the COVID-19 pandemic when no visitors were allowed into the hospital, she had to play mother, father, sister, and friend during her patient’s deaths.
“They relied solely on staff, and it really changed my perspective on life,” Greenwell said. “I’ve been a nurse for 17 years. I carry every patient I’ve ever cared for with me.”
That’s when Greenwell decided to reach out to the Alzheimer’s Association in May 2021.
“I was given the opportunity during the tail end of COVID-19; I felt like I needed to reach out and do more because they didn’t have a voice, and not all of them can speak out for themselves,” Greenwell said. “So, I reached out to the Alzheimer’s Association.”
Greenwell was asked to be a legislative advocate in Kentucky’s 4th Congressional District for the Alzheimer’s Association. Through the Alzheimer’s Association, she gets to write letters to editors, speak at Capitol Hill, and do outreach through social media, which she has never previously explored. Through Twitter, she said she stays in touch with advocates all over the world.
“After COVID-19, there were so many horrible things that happened, but from that came energies to really try to change things for the better and to speak for those who can’t speak for themselves,” Greenwell said.
Through her Alzheimer’s advocacy and her everyday work, Greenwell said she had gotten her voice back.
“When I became involved in advocacy, I realized I was able to speak for all of them, and none of them would be forgotten,” Greenwell said. “And how important it is to put legislation in place and funding because it is a devastating horrific disease.”
Greenwell’s team of eight is the chapter representing Greater Kentucky and Southern Indiana. She said the association wanted a mix of people from different walks of life. Her team consists of individuals like a nurse, a primary caregiver, a researcher, and someone from a mortgage company who sees the financial strain associated with the disease.
One year after joining the Alzheimer’s Association, in May 2022, Greenwell was asked to attend a forum in Washington, D.C., called the Impact Movement. Thinking back to that moment, she said the feeling in the room was palpable.
“The energy was electrifying because everybody was supporting everyone, complimenting each other,” Greenwell said.
And, of course, they were doing so while sporting their signature color.
“You would say, where did you get those purple shoes? Those are wonderful,” Greenwell said. “You’re cheering each other on from all across the US, all towards a common goal.”
But a large part of the time spent in Washington, D.C., was dedicated to speaking with senators and legislators, telling them direct stories of experiences with the disease. Greenwell said the work is planting seeds for people who haven’t spent 17 years seeing how the disease progresses and affects families.
“It kind of makes me cry sometimes,” Greenwell said, getting choked up. “Because I think people don’t understand the importance of just stepping up, and you don’t know what situations you’re going to end up in where your voice is actually heard.”
Next month, from March 19-21, Greenwell will be back at Capitol Hill to speak for a second time. She said being asked back for a second time was one of the “biggest thrills” of her life.
Teams like Greenwell’s from across the country secured $226 million in funding for research to help find a cure for Alzheimer’s, which passed on Dec. 29 last year. They also secured $33 million toward Alzheimer’s public health infrastructure.
This year, Greenwell will work toward the “Gathering Voices” campaign, which ensures Medicare coverage for those diagnosed with Alzheimer’s Disease.
According to Greenwell, the Center for Medicare and Medicaid Services currently “won’t meet those affected with Alzheimer’s halfway” for coverage.
“Medicare covers every other FDA-approved treatment for all other diseases except for Alzheimer’s,” Greenwell said. “Currently, there are two FDA-approved treatments for Alzheimer’s Disease that Medicare does not cover. This is unprecedented and a complete travesty.”
The Gathering Voices campaign urges representatives to join the Congressional Task Force on Alzheimer’s Disease to encourage Medicare coverage of those treatments.
Greenwell said that in 2022, Alzheimer’s and other dementias cost the country $321 billion, and by 2050, those costs could rise to more than $952 billion.
In addition to her social media and time spent on Capitol Hill, Greenwell has also written Op-Eds for additional exposure.
Her first-hand experience with her patients led her to additional advocacy work, but a battle with cancer also led the charge in that fight.
“Something that lit a fire in my heart and soul was something that happened to me,” Greenwell said. “In December 2021, I was diagnosed with cervical cancer.”
While undergoing radiation treatments, Greenwell still put her patients first.
“I started radiation treatments and decided to continue working as long as I could so I wouldn’t disrupt the daily routines and reliance on my presence from my Alzheimer’s patients,” she said.
She only missed five work days in the three months she underwent radiation.
“Any slight change in their routine can be very disruptive, and that was my utmost concern,” Greenwell said. “As a nurse, once you know what’s wrong, it’s like, OK, problem solved. I can deal with this.”
During her fight with cancer, Greenwell said she experienced what it was like to be ignored and ostracized by a close friend who wouldn’t meet her halfway, which made her want to speak on behalf of her patients even more.
“I’ve always been able to have a voice and stand up, and in this case, I had no voice, and then at that moment, it clicked in my head how important what it is I’m doing,” Greenwell said. “What all advocates are doing for the Alzheimer’s Association and other causes that people stand up for and put their heart into.”
Greenwell said she tries to live by the quote, “be a drop of love in someone’s ocean of pain.”
“When you write to your congressman or senator or donate to Alzheimer’s Association, all those little drops can help counteract somebody’s pain,” she said.
As positive and passionate as Greenwell is about her work, there are still mental and physical wears of a job like hers.
Greenwell said that at the end of the day, she has to let go before she heads home.
“All of my residents and patients are weaved into my soul, but you also can’t let all the conflicting emotions affect your own health,” Greenwell said.
She has also been certified in Reiki healing energy and seeks help from aroma therapy, acupuncture and massages to release built-up tension.
“It’s hard when you’re an empathetic person, you absorb a lot, and then there’s just some of it out of your control,” Greenwell said. “I picture that, and I have it disappear for the day because there’s always the next day. There’s always new challenges and new successes or failures.”
She said there is appropriate grief when one of her residents passes away, and she is tempered with the fact that, in most cases, it is peaceful, and she is one of the last people to be there for them.
“I just encourage them that it’s okay to let go, and a lot of people are just like, I don’t know how you do that,” Greenwell said. “But for me, being there is important.”
Going to work every day is a love for Greenwell, and interacting with family members each day, she said, makes them like her family too.
“Yesterday they were playing music and we had the opportunity to dance. The residents that couldn’t dance were dancing in their wheelchairs,” Greenwell said. “I just looked around, and I thought, this means everything. This is a good day for a majority of residents.”
She said that at Carmel Manor, she could focus on activities like dancing, karaoke and crafts with her residents.
“It’s such a comprehensive way to take care of people and to understand,” Greenwell said. “We’ll treat something they drew, like it’s Picasso, frame it, and hang it up. For them to be able to express themselves is just amazing.”
She said Alzheimer’s plaques begin forming on the brain, putting every resident in different stages; therefore, they are all different.
“People say, ‘Well, what about tomorrow?’ You have to focus on the present and be thankful for the good days,” she said.
A large part of that is Greenwell working on what she wants to be remembered by.
“I think, ‘What can I do to leave a legacy?’ I think that helps me a great deal,” she said. “Being a good nurse was fine with me, but when I was given the advocacy platform, I thought I can really leave a legacy.”
Contact the Alzheimer’s Association at (800) 272-3900 or alz.org.