November 23, 2018

‘God was always there’: Caregivers say ‘faith was part of the journey’

Carolyn and Kenneth Gardner of St. Joseph University Parish in Terre Haute smile for the camera in this photo from October 2010. Carolyn spent about six years caring for her husband, who suffered from a dementia she believed to be Alzheimer’s disease, until he died in August 2013. (Submitted photo)

Carolyn and Kenneth Gardner of St. Joseph University Parish in Terre Haute smile for the camera in this photo from October 2010. Carolyn spent about six years caring for her husband, who suffered from a dementia she believed to be Alzheimer’s disease, until he died in August 2013. (Submitted photo)

(Editor’s note: The Criterion is running a series of articles on senior‑related issues through the lens of the Catholic faith. See the first installment in this series here. This installment will focus on the growing population of those with Alzheimer’s disease and dementia and the family members who care for them. Three Catholics in central and southern Indiana share their experiences as caregivers.)
 

By Natalie Hoefer

BLOOMINGTON—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: these behaviors were 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 (AD) now affects more than 5 million—or one in 10—Americans above the age of 65, with as many as 16 million citizens expected to have the disease by 2050. It is currently the sixth leading cause of death nationally, and comprises as much as 70 percent of dementia cases in the United States. (See related article on Alzheimer’s/dementia statistics on page 9.)

The figures regarding AD caregivers are just as staggering. According to the Alzheimer’s Association, 16 million Americans—primarily spouses and adult children—provide unpaid care for people with AD or another form of dementia. Of that figure, 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 agreed to share with The Criterion their experiences as caregivers of a loved one with Alzheimer’s—Rillo and Gardner for their spouse, and Huey for her mother.

Their journeys reveal similar paths, common emotions as caregivers—and their Catholic faith that saw them through to the end.

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‘You tell yourself they’re not so bad’

As the three Catholic caregivers note, the first signs of the disease are subtle and can be explained away by tiredness, stress or just “old age.”

Rillo’s wife Joan first began showing signs of AD 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,” recalls Rillo, 91.

Other odd behavior slowly began to surface during the next several years. Joan finally had an assessment done by her physician in 2010. She was diagnosed with Alzheimer’s.

“The biggest signs came around 2011 or 2012,” says Rillo. In the mid-1990’s, he and Joan became oblates of Saint Meinrad Archabbey in St. Meinrad. Together they published an oblate newsletter for several years.

“One day she looked at the computer and said, ‘I can’t do it,’ ” recalls Rillo. “Just like that. It’s not that she didn’t want to, but she couldn’t remember how to do it.”

Gardner, 73, observed much the same symptoms in her husband Kenneth (Ken), starting when he was 67.

“It started with confusion,” she recalls. “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.”

And then there were the car accidents. He had three wrecks within a short time.

“He finally had to spend a night in the hospital” after an accident, says Gardner. “They called me at midnight and said he was wandering around and didn’t know where he was.

“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.”

Two years passed between the manifestations and the assessment.

“You just don’t want to believe that something could be wrong,” Gardner says.

Huey, 61, agrees, saying 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 admits. “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 in on her daily.

“She’d find a sandwich in a drawer, and we would just laugh about it,” says Huey. “[Mom] had more car accidents, but they could always be explained.”

It was a family reunion that opened Huey’s and her siblings’ eyes.

“She couldn’t remember peoples’ names,” says Huey. “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.”

‘I wanted her to ... know her existence matters’

By the time McClain was nearing 88, Huey’s siblings decided to move their mother to an apartment at Robin Run Village, an assisted living facility in Indianapolis not far from Huey.

On day seven, her mother fell trying to get out of bed. A trip to a hospital revealed that she had fractured a bone deep within the hip, the kind of injury that only time can heal.

Huey had signed a contract for progressive care at Robin Run. The staff performed an assessment on her mother to determine where she should be placed.

“It was then I learned just how much was wrong with her,” says Huey. “The assessor asked her simple questions like what day it was, who the president was, and she was way off.”

McClain was placed in the facility’s memory care unit for those with dementia, and “she thrived there,” says Huey.

She learned how to help care for her mother. Except for a few breaks and trips out of town, Huey visited her mom daily for four years.

“I dressed her and did her hair every day and picked out jewelry for her,” she says. “I wanted her to look good to let her know her existence matters every day.”

As Huey and a friend were praying the Divine Mercy chaplet by her mother’s bedside on April 9, 2017—Palm Sunday—McClain died, just shy of her 91st birthday.

‘I honestly thought I could do it all’

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.

“I was always a strong person,” he says. “I honestly thought I could do it all, that nobody could care for her like me.”

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 Autumn Hills Alzheimer’s Special Care Center in Bloomington, just a few 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,” says Rillo. “But the decision wasn’t about me, it was about [Joan].”

In hindsight, Rillo realizes he should have sought help sooner.

“I could have made her more comfortable if I had put her in Autumn Hills one to two years earlier,” he says. “Plus I didn’t realize the toll [caregiving] took on me until after she was there.”

Rillo visited his wife “seven to eight hours every day for one year and three months,” he says.

When Joan died at the age of 83 on Feb. 15 this year, the couple had been married almost 62 years.

‘You couldn’t have pried me from him’

Like Rillo, Gardner cared for her husband in their home. Soon after his diagnosis, they moved into a condominium.

“There was a fenced-in part, so he could walk outside and be safe,” says Gardner, who was 65 at the time of the diagnosis. “But sometimes a neighbor would call me saying he was at their gate.”

While their children—five in Indiana and one in California—were there when she needed them, says Gardner, “I was with Ken 24/7. You get exhausted.”

She received in-home help from her region’s Area for the Aging agency. Gardner would also drop her husband off occasionally at an adult day care service so she could run errands, but “he didn’t like it at all,” she admits. “He knew what was going on.”

Gardner says Ken became angry only toward the end, about eight years into his illness. An incident in the summer of 2013 led to her calling 911 for safety. Two weeks of hospitalization followed for Ken, then one month in a nursing facility to regain his strength.

“That was the worst month of my life,” says Gardner. “He didn’t get the care he needed. … I finally called the doctor to ask if I could get hospice and take him home.”

Ken, 75, died at home 10 days later on Aug. 14, 2013, surrounded by his family and his wife of 48 years.

Despite the hardships of caregiving, says, Gardner, “You couldn’t have pried me from him. There was no place else I wanted to be but beside him. I don’t regret a thing.”

‘Faith was in every part of the journey’

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,” says Gardner. “God was always with me.”

During Mass at her parish, she says, “People sitting around us were wonderful. They would help get him Communion” while she served as an extraordinary minister of holy Communion.

And thanks to help from parishioners who would stay with her husband during coffee and donuts after Mass, Gardner was able to continue teaching fourth‑grade religious education, something she says she “enjoyed, and it was such a blessing to continue doing that.”

God was with her through the eight years of Ken’s dementia, she notes, providing her “the privilege of being with Ken when he died. God just worked it all out.”

Now, Gardner both coordinates and volunteers with her parish’s Communion ministry for the homebound.

“I visit a nursing home, and I see people dealing with [Alzheimer’s],” she says. “I can talk with them and be compassionate and be their friend. It makes me feel good that I can help someone when no one else understands, and I can talk with the families.

“God always gets you through things to learn to help others.”

Like Gardner, Rillo credits God for sustaining him throughout the years he cared for his wife. He also found the comfort of constancy in his prayers as an oblate of Saint Meinrad.

“Benedictine oblation was my umbilical cord,” he says. “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.”

But sometimes his prayer was a non‑scripted plea.

“I would pray, ‘O God, I can’t blame you. You must have some reason. Please don’t let my love or patience diminish,’ ” says Rillo.

Like Gardner, he is using his experience to help others. He attends and often speaks at support groups for caregivers of loved ones with AD.

Looking back on his seven-year journey as a caregiver, Rillo says his “prayer life grew in intensity and scope. Her Alzheimer’s made me stronger in faith.”

As for Huey, “Faith was in every part of the journey,” she says. “You could see God’s hand in everything.”

Her mother had frequent access to the sacraments during her four years at Robin Run, and when Huey took her mother to Mass, she says, “You could see in her eyes that she loved it.”

In the days before her mother died, “God worked out all the details,” says Huey. The siblings were able to make a final visit despite living in different states, and their mother was able to receive the anointing of the sick.

And of course, she adds, there was the Divine Mercy chaplet she and her friend were praying at her mother’s bedside when she died. Huey is familiar with the words of Christ recorded by St. Faustina in the 1930s: “When they say this chaplet in the presence of the dying, I will stand between My Father and the dying person, not as a just Judge but as a merciful Savior” (Diary of St. Maria Faustina Kowalska, #1541).

“I know God permitted my mom’s Alzheimer’s, and I know he had me care for her,” says Huey. “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.” †

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