Juleen Flanigan plays a keyboard and listens to music in her room at Maplewood at Stony Hill. She loves rhythm and movement, taking walks, and helping people out when she can. It comes naturally from her decades-long career in social work. Her specialty is early childhood, birth to three and she spent 30 years setting up programs for Education Connection (now named EdAdvance) in Litchfield and Danbury.
She is a faithful person and a member of St. Mary’s parish in Bethel. A longtime parishioner, Juleen is one of the founders of Women of Faith. Juleene has attended daily mass her whole life and continues that devotion with her husband of 36 years Ray Flanigan, owner of Bethel Photoworks. They watch the live-stream from St. Thomas More Church in Breezy Point, N.Y. every morning when Ray visits her before work.
The church played a significant role for Juleen as she grew up one of 12 children. Her family lived in Richmond Hill, N.Y. but spent summers on the Rockaway peninsula. “Their mother took all the children to mass every day,” Ray said, recounting the story. He visits his wife in the evenings as well.
Juleen's sons from a prior marriage, Brien O’Callaghan and Shannon O’Callaghan, both in their 50s, were baptized at St. Thomas. Ray and Juleen still go to Breezy Point to visit family.
On Sundays, Ray and Juleen attend live mass at St. Mary's. After, when they go back to their house, Ray notices Juleen no longer seems to feel at home. It seems like not that long ago when Juleen and he were taking long walks with their two dogs, as part of Juleen’s regimen to walk seven miles a day to stay fit. Now, when Ray sees her at Maplewood, she no longer asks about the dogs.
In 2017, Juleen was diagnosed with early-stage dementia. One year later, her doctor delivered more bad news. Juleen had early-stage Alzheimer’s. This past February marked only one year since Juleen had to stop driving, her husband said. “She was still going to mass every day.” He attributes the exercise, along with the lifestyle changes the couple made together to a plant-based diet, getting proper sleep, and taking supplements as the reason Juleen's physical abilities are stable. But her thinking and memory skills have significantly declined over the five years since her 2017 diagnosis.
Today, her days include physical activities in memory care at Maplewood, where the Flanigans have arranged for two paid caregivers to supplement what Maplewood provides.
Ray has become an active fundraiser to help pay for his wife’s care. At $8,200 a month for Maplewood and an additional $2,000 a month for private caregivers, it is a prohibitive financial burden. Juleen has a 401K retirement account and receives Social Security. When her savings are depleted, her family will have to move her from the private assisted living facility to one that Medicaid approves, Ray said.
Ray held a birthday fundraiser that raised $9,000 in the first weekend. In addition, he is holding a Mother’s Day walkathon in Bethel to raise money.
Ray said Juleen is a very active person. She’s busy all the time. She wants to do things. “Someone that sits all day doesn’t need as much care. A person with Alzheimer’s that is still active needs a team of care.”
“The support from Juleen’s friends at St. Mary’s, former colleagues, and the Bethel community has been unbelievable. We still go to Breezy Point to visit. The business has been great for 24 years. A support group has been great therapy for me.”
He hopes that by talking about their story more people will become aware of the devastating financial impact on top of the emotional one dementia care brings to families.
The couples’ background: married after exactly one year
A year to the day when Ray and Juleen met, they got married.
He is from Westport, where he was working for a framer and doing photography and Juleen was working there for a caterer, though she had lived in Bethel since the 1970s.
“She had to arrange for someone to photograph the food they were doing for a 2,000-person cocktail party at Pepsi headquarters in Somers,” Ray said.
He was 35 and she was 39.
Ray feels that his wife’s cognitive decline may have been precipitated by injuries she suffered in 2014 when her car was hit by a truck.
Julene had left St. Mary’s and was on Route 67 to go to Education Connection in Litchefield when a Ford F-350 came out of a gas station and crashed into the front corner of her car.
The airbags bruised her sternum and she was badly shaken from the impact, according to Ray. Juleen also had a concussion and spent six months in physical therapy and out of work.
She returned to work and was quickly immersed back into a substantially busy work schedule, Ray said.
Julene has her masters in social work and is specially trained to work with young children from birth to three. “She set up many programs for Education Connection and trained lots of people. She did such a good job at the training that when she was out for six months everything ran smoothly. One of her programs was to set up counseling for the siblings in Sandy Hook. She was known throughout the state for her work,” Ray said.
Within a few months after she returned to her job, Juleen started having difficulties like missing appointments and showing up to the wrong place for work meetings. "She wasn't able to keep on top of her calendar," Ray said.
Ultimately, she made the choice to retire. Gatherings in her honor included speakers like the mayor of Danbury, school superintendents, and retired co-workers she had trained.
Her first diagnosis came first from a doctor in Connecticut, and then the couple went to Florida to see two dementia and Alzheimer’s specialists. One of them advised Juleen to adopt a holistic lifestyle, with plant-based eating, exercise, sleep, and supplements. The couple complied and returned to Connecticut.
Her diagnosis and assessments of its progression are based on several factors used by her doctor, including the Montreal Cognitive Assessment. The test is a series of 30 questions. When her doctor was certain it was Alzheimer’s he gave Juleen a prescription and told Ray “Go to a support group.”
One of the Florida doctors did genetic testing and found that Juleen has the gene that makes her susceptible to Alzheimer’s and dementia. The gene, APOE ε4 u, increases the risk for Alzheimer's and is associated with an earlier age of disease onset in certain populations.
“They said, ‘Unfortunately, there’s not much you can do.’ So we switched our diet to a plant-based one and walked the dogs,” Ray said.
Ray couldn’t believe what he was hearing about his wife who “directed so many programs” and was dedicated to her profession, such an active person, fit, but facing cognitive decline.
“I believe it’s environmental. I believe it’s in the food we eat daily. “It’s brutal. I cry every day,” Ray said.
The significant decline was noticeable last February when she had to give up driving. Ray first noticed a problem on their vacation. “Juleen said to me ‘I want to go home to Ray and the dogs,” he recounted.
Back home, he realized he couldn’t leave his wife alone. Having part-time aides wasn’t enough supervision so he looked into getting a full-time live-in aide, which would have cost $10,000 a month and would not have included driving her or getting up at night for her care. .
“She was going to bed early and might go outside on the driveway at four in the morning to go to mass. I could no longer go to work and leave her alone. If I had someone come live in I would still have to keep the two aides the four mornings and two afternoons. It is not helpful to have an aide that cannot drive.”
So last fall, they decided Juleen would go to Maplewood. The same aides she had at home are the ones that go to help. One of them has taken online training in Positive Approach to Care (PAC) by Teepa Snow, an occupational therapist that has worked with people with dementia for 40 years.
Known as an educator on dementia among caregivers, Snow has a YouTube channel which inspired Ray to learn as much as he could about PAC. He even went on Snow’s YouTube broadcast on Friday, Apr. 21 to tell Juleen's story.
Juleen takes medication that is supposed to slow the progression of Alzheimer’s, but Ray is uncertain if it is helping. He is certain however that, “Alzheimer’s isn’t something you can beat. In 110 years of Alzheimer’s research, there’s still no cure.”
Birthday fundraiser, walkathon
“Like so many families we would have preferred remaining at home but the cost of home care sadly negated the possibility.”
The Walk for Juleen’s Team is on Saturday, May 13 from 11 a.m. to 1 p.m. at the Bethel High School track. The day will start with a 9 a.m. mass at St. Mary’s, 26, Dodgingtown Road. After the walk, there will be a reception from 2 to 4 p.m. at Maplewood at Stony Hill, 46 Stony Hill Road. Donations are accepted. Visit here to learn how you can donate or get involved.