Cyndy Noel didn’t know what she was in for when her husband Ron’s memory issues first started to manifest themselves around 2006. Within two years, Ron’s changing behaviors could no longer be ignored, and while his Alzheimer’s had not yet been diagnosed, Cyndy was already reluctantly assuming the role of caregiver.
“I call those the ‘years of the b#@!*,’” the Colorado Springs resident said as she reflected on the challenges of dealing with a loved one whose memory and behaviors change uncharacteristically, without understanding the underlying reasons. “I would say things like ‘how hard is it to run the vacuum cleaner?’”
Today, six months after her husband passed away, Cyndy has a deeper appreciation for and understanding of the challenges – both to the caregiver and person with the disease – that Alzheimer’s poses. And if she has one key learning from the 10-year process, it is to not wait. Speak up and seek help.
“Alzheimer’s has a bad name,” Cyndy said. “People don’t want to talk about it. I didn’t.”
Ron had been a dentist who went back to school after retirement and became a part-time counselor. He was also a poet and blossoming artist. Yet Cyndy eventually saw the need to take charge and pushed for clarification regarding the changes in her husband’s behavior, then began exploring the options that were available to help her navigate the journey.
“The reality is that you don’t get it [Alzheimer’s] until you’re there,” she said. “Even many medical professionals don’t understand it.”
One day, after hearing her continuously complain about Ron, a coworker gave Cyndy a brochure from the Alzheimer’s Association, and the message clicked. She called that day, which eventually led to a meeting with a specialist and a diagnosis. And it sparked a relationship with the Alzheimer’s Association that continues after Ron’s passing.
In addition to the guidance on legal and caregiving steps, the Noels’ got involved in classes and workshops that brought them into contact with their “tribe,” people with shared experiences who Cyndy notes will “probably be friends for life.”
“Alzheimer’s is so complicated,” she said. “The ones who really get it are the ones going through it. We need each other. We can be a team. You can’t be afraid to reach out and connect.”
Those connections are as important – if not more important – for the caregiver as they are for the person with the diagnosis. Some people don’t make those connections and fail to adjust.
“You have to adapt to a new paradigm,” Cyndy said. “Sometimes there’s anger. Sometimes there’s guilt. There is a need for empathy,” which she noted is most likely to come from other caregivers.
Cyndy’s advice to people who find themselves embarking on the Alzheimer’s journey is to take a thorough and deliberate approach to getting a medical opinion, take charge of the situation in a respectful and considerate manner, get involved and learn as much as you can.
“Often doctors are in a rush to render an opinion and move onto the next case,” she said. “If you are the caregiver, encourage the doctor to engage with the family, because the individual with memory issues will be in denial. People can have the ability to ‘look great’ and fake it for a period of time, but that window gets smaller and smaller. Family members can explain how the person has changed.”
While her husband has recently passed away, Cyndy is by no means done with the Alzheimer’s Association. In addition to writing on the subject for area publications, she participates in the Colorado Springs Walk to End Alzheimer’s. Proceeds from the Walk go to support educational programs and services in the Colorado Springs area, as well as national research to find a cure for Alzheimer’s.
“My journey with Ron has been one of the most valuable experiences of my life,” she said. “I’ve changed and have become more confident in being with uncertainty, as well as more compassionate for myself and others. I’m grateful for that.”
To learn more about support groups for caregivers or other services of the Alzheimer’s Association of Colorado, go to www.alz.org.co or call the 24/7 Helpline at 800-272-3900.