Bob DeMarco Alzheimer's Reading Room

Thursday, March 15, 2007

Many Alzheimer's caregivers seek help in God



About a third of those who take care of loved ones with the disease feel 'more religious' because of their experiences, a new national study says.

'There is no minute in which the caregiver can afford not to be vigilant over the patient, and that makes for a very trying kind of challenge.'
— Dr. Jeffrey L. Cummings, founder and director of the UCLA Alzheimer's Disease Center


Source LA Times

By Tami Abdollah, Times Staff Writer
March 14, 2007

Each morning Frances Chavis sneaks out of her house for 6 a.m. prayer, hoping to get back before her husband wakes up.

Chavis, whose husband Lemuel, 72, was diagnosed with Alzheimer's disease in 2003, spends her days as a "shadow" — watching over her husband and the house, making sure everything is done correctly — and, when she can, she naps.

And every morning, after about two hours in church in the Crenshaw area, she returns to her home with the motivation and strength to go on.

"I have to realize that when it's too hard for me," Chavis says, "it's just right for God."

A survey to be released today indicates that Chavis' experience is not unique. The study found that about one-third of people caring for a loved one with Alzheimer's disease felt "more religious" because of the experience. The study, which surveyed 650 adults nationwide, was conducted by Harris Interactive on behalf of the Alzheimer's Foundation of America.

The survey found that 36% of respondents, who identified themselves as religious or nonreligious, said they felt "more religious." This feeling was more pronounced among African American respondents, with 48% saying that's how they felt.

"When you're dealing with disease, sickness and tragedy, people get shaken out of their lethargy and begin to ask the ultimate questions," said Father Paul Kowalewski, rector of St. James' Episcopal Church in Los Angeles. "And when they do, they find God, or God's presence."

More than 4.5 million Americans have Alzheimer's disease, a neurodegenerative illness characterized by memory loss and disorientation, among other symptoms. Alzheimer's disease, more common in the elderly, worsens over roughly a 10-year period and is fatal.

There is no cure, and only "modestly successful" treatments exist, said Dr. Jeffrey L. Cummings, founder and director of the UCLA Alzheimer's Disease Center.

About 20 million Americans are caring for someone with Alzheimer's, according to the foundation. Most of the caregivers are family members, spouses or adult children.

Because caregivers bear heavy burdens — for example, the frustration of patients who frequently do not remember that they don't remember — they may die younger and can lapse into substance abuse and depression, Cummings said.

"It's been called, the '36-hour day,' " Cummings said. "Because there is no minute in which the caregiver can afford not to be vigilant over the patient, and that makes for a very trying kind of challenge."

Although Chavis was previously religious — she was raised a Baptist and attended church on Sundays — she said that after her husband's diagnosis, the church anchored her even more.

"I couldn't do it alone, and even though I was centered around God, I had to seek him even more, because it started to get more hectic, and there were no answers," she said.

For Chavis, 51, the anxiety and stress ultimately led to an ulcer that put her in the hospital for five days last November. She said that since then, she started attending the morning prayer at West Angeles Church of God in Christ.

Lemuel Chavis, a former Los Angeles elementary school principal, used to be upbeat, his intelligence obvious, his wife said. Married nearly 12 years ago — it's his third marriage and her first — they enjoyed taking short trips to San Diego or Palm Springs. Sometimes they went to the beach.

Many evenings, she said, he would read poetry to her, including "If" by Rudyard Kipling and "Mother to Son" by Langston Hughes. But still, a "tough guy," he rarely cried.

Now, Chavis said, she sees her husband reduced to tears a couple times a week, complaining of the "splitting" in his head or his inability to do something. Like caregivers for Alzheimer's patients all over, she watches helplessly. And so she pushed herself closer to God.

"Who would I turn to?" she said. "I've tried talking to my friends, I've tried having a cocktail or two, I've tried … thinking about other things…. And I know it's going to get worse."

The experience, Chavis said, has taught her to trust in God's ways. She recalled moments of prayer: "I would say, 'You made him, you made the universe, you have to help me. You know the answers, I don't.' "

Peter Hill, a psychology professor at the Rosemead School of Psychology at Biola University in La Mirada, said that for some people, facing a loved one with a terminal illness is what makes them aware of their own mortality. The experience causes them to search for meaning beyond themselves, for "a sense of transcendence," he said.

Sometimes spirituality can help caregivers deal with the dissonance between the person the caregiver once knew and the person who is before them, said Glen Milstein, an assistant professor of psychology at City College of New York.

"The real bottom line to all of this is that care-giving for persons with chronic illnesses is hard," Milstein said. "So you're going to use everything that will help you cope. What is it to mourn a living person? What is the ritual of mourning a living person? Where else but religion would the human go?"

In the United States, there are more than 260,000 religious communities — synagogues, parishes, mosques and other centers of worship — and about 80% of Americans affiliate themselves with a religious institution, Milstein said.

Chavis said she has found comfort and strength in her religious community, its prayers and hymns, particularly the song "The Battle Is Not Mine, It's the Lord's."

According to the Alzheimer's Foundation, the disease affects nearly 50% of those over age 85. By 2050, almost 16 million Americans are expected to have it.

"When it gets down to illness and you are facing the ultimate realities, you could have all the science in the world," said Kowalewski, the St. James rector. "But you're really facing humanity. There's an old saying, 'there's no atheists in the foxholes,' and it's sort of like that."

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Bob DeMarco is an Alzheimer's caregiver and editor of the Alzheimer's Reading Room. The Alzheimer's Reading Room is the number one website on the Internet for advice and insight into Alzheimer's disease. Bob taught at the University of Georgia, was an executive at Bear Stearns, the CEO of IP Group, and is a mentor. He has written more than 700 articles with more than 18,000 links on the Internet. Bob resides in Delray Beach, FL.

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