'God was always there' for caregivers of loved ones with Alzheimer's
Natalie Hoefer Dec. 31, 2018
For Thomas Rillo, it was the moment his wife could not remember how to use the computer.
It was similar for Carolyn Gardner, whose husband became confused by tasks he could previously perform on autopilot.
And for Dyan Huey, it was the time when her mother, looking at two of her grandchildren, called one fat and the other skinny.
In each instance, Rillo, Gardner and Huey were forced to face the truth: Such behavior was more than just the quirks of aging.
Soon each would learn the name of the road that they had unknowingly been traveling for some time: Alzheimer's disease.
According to alzheimers.net, Alzheimer's disease affects more than 5 million Americans -- about one in 10 who are 65 and older. As many as 16 million citizens are expected to have the disease by 2050. It is the sixth leading cause of death in the U.S.
The figures regarding caregivers of those with the disease are just as staggering. The Alzheimer's Association reports that 16 million Americans -- primarily spouses and adult children -- provide unpaid care for people with the disease or another form of dementia. Of that number, about 34 percent are age 63 and older.
Rillo of St. Charles Borromeo Parish in Bloomington, Gardner of St. Joseph University Parish in Terre Haute, and Huey of St. John the Evangelist Parish in Indianapolis recently discussed their experiences as caregivers with The Criterion, newspaper of the Indianapolis Archdiocese.
Their journeys reveal similar paths, common emotions as caregivers and their Catholic faith that saw them through to the end.
As the three caregivers noted, the first signs of the disease are subtle and can be explained away by tiredness, stress or just "old age."
Rillo's wife Joan began showing signs of the disease in 2005 while packing for a move. She was about 70 at the time. "A friend who was helping told me she packed and unpacked her socks two or three times," recalled Rillo, 91.
Other odd behavior slowly began to surface during the next several years. Joan finally was diagnosed with Alzheimer's in 2010.
In the mid-1990s, he and Joan became oblates of St. Meinrad Archabbey in St. Meinrad, Indiana. Together they published an oblate newsletter for several years.
"One day she looked at the computer and said, 'I can't do it,'" Rillo recalled. "Just like that. It's not that she didn't want to, but she couldn't remember how to do it."
Gardner, 73, observed similar symptoms in her husband Ken, when he was 67. "It started with confusion," she recalled. "We raised terriers at the time. He was giving the dogs medicine for the eyes and ears and he reversed it. He put the eye medicine in the ears and the ear medicine in the eyes. He would never have done that before."
Then there were the car accidents. He had three wrecks within a short time.
"We finally went to the doctor and ran some tests. It was never officially diagnosed as Alzheimer's, but I'm almost certain that's what it was," she said.
Huey, 61, said she and her siblings were "in denial" about their mother's odd behavior.
"Family is the least compassionate at that (beginning) stage because they just want their lives to be normal," she admitted. "You deny it. You tell yourself they're not so bad, that everything will be OK."
At the time the symptoms became more obvious, Huey's mother, Mary Elizabeth McClain, was about 85 and living in West Virginia. One of Huey's sisters lived nearby and checked on her daily. It was a family reunion that opened Huey's and her siblings' eyes.
"She couldn't remember peoples' names," Huey said. "She was agitated. At one point ... she looked at the grandkids and said, 'That one is fat. And that one is skinny.' She would never have said anything like that before."
As McClain neared 88, Huey's siblings decided to move their mother to an assisted living facility in Indianapolis. After a fall, McClain was diagnosed with Alzheimer's disease. Except for a few breaks and trips out of town, Huey visited her mom daily for four years.
As Huey and a friend were praying by her mother's bedside in 2017, McClain died, just shy of her 91st birthday.
At the time of Joan's diagnosis, the Rillos had been married 55 years. She was 77 and he was 84, but he was determined to care for her in their home.
Rillo bathed and dressed his wife. He cooked, cleaned, shopped, did laundry and home maintenance and never left her alone. But "doing it all" took its toll. Rillo suffered three falls while caring for Joan. Then in 2017, she fell two days in a row, and he was unable to pick her up without help from a son.
With his children, Rillo decided it was time to move Joan into an Alzheimer's care center in Bloomington, minutes from their home.
"It's hard to relinquish caregiving to others who don't have the same love (for your spouse) as you, no matter how professional they are as caregivers," Rillo said. "But the decision wasn't about me, it was about (Joan)."
Joan died at age 83 last February. The couple had been married nearly 62 years.
Like Rillo, Gardner cared for her husband in their home. Soon after his diagnosis, they moved into a condominium.
While their children -- five in Indiana and one in California -- were there when she needed them, Gardner said, "I was with Ken 24/7. You get exhausted."
Gardner said Ken became angry only toward the end, about eight years into his illness. Ken, 75, died at home in 2013, surrounded by his family and his wife of 48 years.
Gardner, Rillo and Huey all agree: It was their faith and trust in God that carried them through their journey.
"I never felt so close to God as at that time (of giving care) because it was just him and me," Gardner said. "God was always with me."
God was with her through the eight years of Ken's dementia, she noted, providing her "the privilege of being with Ken when he died. God just worked it all out."
Now, Gardner coordinates and volunteers with her parish's Communion ministry for the homebound.
Rillo credits God for sustaining him throughout the years he cared for his wife. He also found the comfort of constancy in prayer.
"Benedictine oblation was my umbilical cord," he said. "I would read the Liturgy of the Hours to her that we used to pray together. I prayed the rosary out loud, and she would close her eyes and move her lips in synchronization with my words."
As for Huey, "Faith was in every part of the journey," she said. "You could see God's hand in everything."
Her mother had frequent access to the sacraments and when Huey took her mother to Mass, she said, "You could see in her eyes that she loved it."
In the days before her mother died, "God worked out all the details," Huey said.
"I know God permitted my mom's Alzheimer's and I know he had me care for her," Huey said. "When I said yes to taking care of her, it was like saying yes to God. Everything fell into place."
"This was a total faith journey," he added.
Natalie Hoefer is a reporter at The Criterion, newspaper of the Archdiocese of Indianapolis.
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