By Melody Burri
Alzheimer’s disease is the only public health issue in the top 10 in the U.S. today that has no cure, prevention or treatment.
The Rochester and Finger Lakes Chapter of the Alzheimer’s Association has been working hard to change that for the last four decades, serving area families dealing with the impacts of this deadly disease.
“Forty years ago, our chapter was founded to support the caregiver,” said executive director Teresa Galbier. “A small group of families with nowhere to turn came together to support each other. They ran a small ad in the paper that said ‘we’re getting together and if you are a caregiver, you’re invited.’”
“That Thursday night,” she said, “80 people showed up.”
The Rochester and Finger Lakes Chapter now serves nine counties. Over the last two years, since March 2020, they’ve fielded 11,513 phone calls, offered 1,012 programs serving 6,100, and had 17,600 engagements with family caregivers, people living with Alzheimer’s and members of the professional community.
“Most people living with Alzheimer’s will be cared for by a family caregiver,” said Galbier. “We are here to walk the journey with the families. We don’t want them to walk alone. We want them to have the tools they need to be informed and educated caregivers. The resources we offer include caregiver support groups, education and our 24/7 help line so they know we’re just a phone call away when they need us.”
The Alzheimer’s Association also offers engagement opportunities for those in the early stages of the disease.
“After people receive a diagnosis, they tend to isolate, which makes the journey even more difficult,” said Galbier. “So we offer outings, boat rides, art gallery tours — opportunities to meet new friends and neighbors who will become their new network of support, because they’re all walking similar journeys.”
The Alzheimer’s Association offers support groups for families and all programs are free to people with the disease and their family caregivers.
“That’s why we fundraise,” said Galbier, “so there will be no cost to families.”
According to Alzheimer’s Disease facts and figures (alz.org/facts), more than six million Americans are currently living with Alzheimer’s. The cost of their care was an estimated $355 billion in 2021, and is on track to increase to more than $1.1 trillion (in today’s dollars) by mid-century.
“I’m here because I have to fight the fight every single day until I can be part of the team that announces the first survivor and we can celebrate a world without Alzheimer’s and other dementias,” said Galbier.
One family’s story
Denise’s husband was diagnosed with Alzheimer’s in February 2020, just weeks before COVID-19 was declared a pandemic. At the time, she was running her own business — something she’d been doing for the last 30 years.
“My husband declined greatly after the diagnosis,” said Denise. “So I not only had to deal with the surprise of his condition, but everything that was going on with COVID.”
By October 2021, it had become too difficult to work full-time, provide sole care for her husband and keep up with essential demands like laundry, grocery shopping and household chores. Denise made the tough decision to shutter her business. Since the couple had been planning to retire eventually, she bumped the date forward, packed up the house and moved cross country.
She describes it as being “probably the most difficult time in my life.”
“The one thing people should know about the disease is that it strips the essence of the individual away very slowly at first,” she said. “You don’t notice that anything is happening. You think to yourself, ‘maybe this behavior is aging, maybe he’s just in a bad mood, why is he making that decision?’ All the while your life is changing, again very slowly.”
Once a diagnosis is made, fear, sadness and loss set in, she said.
“I think this happens in all cases, but especially when a spouse or partner becomes the caregiver,” said Denise. “You have lost your partner in life — someone that you shared everything with — and now the body is still there, but the person as you have known them is fading away day by day.”
The Alzheimer’s Association’s wives and partners support group has been instrumental in helping her work her way through some of the feelings, Denise said. Listening to others who are dealing with the same emotions is very helpful.
“Alzheimer’s patients all experience the disease in a different way,” she said. “We as caregivers don’t have a play book to follow, but by listening to others going through the same thing, it gives us a little more knowledge to be able to continue on.”
More than two years later, Denise still says she’s glad that she has the opportunity to care for her husband, and she knows that he would do his best for her if the situation was reversed.
“Life is ever changing — you have good days and bad,” she said. “You just need to remember that it is a disease, and the way that you approach it makes a huge difference in the outcome of each day. There are many people out there to help. You just need to reach out.”