Vivian Zitt recalls someone asking former First Lady Nancy Reagan how she coped while caring for her husband Ronald Reagan during his years living with Alzheimer's disease. You put one foot in front of the other and trust God, Zitt remembers the devoted wife of the former president saying.
For Zitt, who spent a similar season caring for her mother, it is a wise and pithy sum for a complex equation. But it's not without its irony.
As Zitt points out with a soft laugh, Reagan had a staff assisting her. Not so for Zitt or most family members who find themselves caring for a seriously ill or disabled loved one.
Zitt's experience has led her to consider starting a support group for caregivers at Calvary Baptist Church, where she is a member. One of her own biggest coping strategies, she said, was to pray.
Yet as a caregiver, she also drew strength and comfort from fellow mortals. "You want someone else [to talk to] who understands where you're coming from," she said.
According to the "Caregiving in the U.S." report, which was published by the National Alliance for Caregiving and AARP in 2004, praying, followed by talking with friends or relatives, are the two most common means of coping with the demands caregivers shoulder.
So a faith-based group for caregivers seems like a good idea. At this point, though, few Huntington Beach churches have one.
Grace Lutheran Church is one exception. Its Orange County Care Connection Outreach — a day-care program for adults 55 or older, who are frail and in need of extra care and supervision or have mild to moderate memory impairment — also reaches out to caregivers, with services open to anyone regardless of religious affiliation.
At $45 a day, Care Connection's day-care gives caregivers a chance to take a breather from what its website calls "the physical and emotional demands of 24-hour care."
Its intentionally non-institutional day-care environment with a high staff-to-participant ratio is reassuring. The program aims to meet the functional, creative, emotional and spiritual needs of those in its care.
For caregivers, it offers consultations, referrals, training and encouragement. On the first Saturday morning of each month, it hosts a support group where caregivers can talk about theirconcerns and find solutions for difficult situations.
An expert is there to give them tips on coping with unique challenges they face. On April 7, for example, Ellis Waller, a gerontologist and instructor at Coastline Community College, who founded the Orange County Care Connection Outreach nearly 12 years ago, will talk about how to communicate with people with dementia.
It's a skill all its own, said the program's director Crystal Orr. And she would know.
Long before Orr directed the program, her mother, who had Alzheimer's disease, was one of its first participants. Care Connections made it possible for Orr to keep her mother at home until her life's end.
An estimated 21% of the population, age 18 and older, provided "unpaid care to friends or relatives 18 and older," according to the "Caregiving in the U.S." report. That amounted to 44,443,800 adults.
Apply those numbers to the population of Huntington Beach, as taken from the 2000 U.S. Census, and there could be as many as 30,956 caregivers in the city. Some of them find help at the Orange Caregiver Resource Center, which is affiliated with St. Jude Medical Center in Fullerton.
The center's associate director, Ian Wilson, counts keeping the faith among the most important things caregivers can do for themselves. "If you're looking outside yourself; if you're praying; if you're involved in a church group," the soft-spoken Wilson said, "usually you'll get strength with that.
"You can cope better … if you're feeling like God is on your side. [When] you know he's not punishing you because you're in this situation … it's really something that draws you closer to him."
It's also critical for caregivers to take time for themselves, to ask for help, to take care of their own health — as well as their loved one's health — and to plan for the future, he said. Know your loved one's diagnosis, he advised. Know what lies ahead.
The resource center, which has a website at www.caregiveroc.org, provides multifaceted assistance geared to ease the caregiver's load. Many faith communities, even when they don't have a ministry dedicated to caregivers, try to help.
Congregations like Central Baptist Church, Beachcities Community Church, St. Wilfrid of York Episcopal Church, Calvary Baptist Church and the Sangha Center for Spiritual Living employ lay ministers, deacons and deaconesses and small groups to support caregivers with their task.
At St. Wilfrid of York its seniors' ministry, Celebration of Wisdom also hosts an interfaith worship service for caregivers and their loved ones twice a year. The next is scheduled for June 28.
Paula Hulse, a lay pastoral minister who oversees the group, sent me a poem titled, "Caregiver," written by Gwen Tremain Runyard, who is a member. Runyard, Hulse said, has expressed what many caregivers feel, sometimes without being able to articulate it.
"I look in your eyes
But they don't know me.
I speak of the past,
And you smile.
I touch your hand
For I know
You will be leaving
In a little while.
I wish I knew how to reach
I know I'm still in your heart.
I'd like you to know my
soul has been weeping
long before the
A little longer.
I'll comfort you
When you sigh,
I wonder if you'll ever
Know I love you, and
I'm trying to say
As our nation's affluence and its advanced health care prolongs the years we live, the number of caregivers among us grows. The care they receive is as crucial as the care they give.