by Dana Herra, Daily Chronicle
DeKALB - For more than five years, Marianne Battista has watched a debilitating disease rob her husband of one thing after another.
There were tears when he had to use a walker. Then came the wheelchair. This winter, the illness finally confined 58-year-old Charlie Battista to his bed.
"Both of us, over the years, have been grieving each loss," Marianne Battista, 52, said during an interview at a coffee shop Friday evening. Every few weeks or months there would be some new symptom, some new loss."
Charlie Battista has multiple system atrophy, a neurodegenerative disorder somewhat similar to Parkinson's disease.
"I used to have the strength of a canary," he said during an interview Wednesday in his home. "Now I have the strength of a butterfly."
Marianne Battista, as his primary caregiver, is one of an estimated 8 million spousal caregivers in the U.S.
"Spouses are the last ones to identify themselves as being caregivers," said Richard Anderson, president of the Well Spouse Association, a volunteer support network for people whose spouses are critically ill or disabled. "The danger in the whole situation is burnout. You're trying to keep things the way they were, and your spouse can do less and less."
Anderson knows - he cared for his ailing wife for 29 years before her death in 2004. She suffered from an internal form of scleroderma, a disease that causes hardening of tissues. She had been sick for 24 years before Anderson found the WSA, which started in 1987.
The WSA provides people caring for their partners a level of support missing from other caregiver groups, he said. "
"You go to the caregiver groups, and people will talk a lot about looking after their elderly parents. But caring for a spouse is different," he said. "You go to disease-based groups, and they're very helpful for the ill spouse, but they don't have a component for the well spouse."
There is a level of intimacy in the spousal relationship missing from other family caregivers, Anderson and Battista said. There usually is a drop in income and a household shift as the well spouse takes on more responsibility.
"In marriage, you're partners," Marianne Battista said. "When your spouse is sick, you gradually take on the job you've been doing, and his or her job, and the job of caregiver. Now you're really doing the work of three people."
Marianne Battista was fortunate enough to already have a job when Charlie got sick, and she makes enough money to employ a caregiver while she works.
"We have to preserve her job because she carries the insurance," Charlie Battista said. "Our goal is to keep me out of a nursing home."
Many people have to quit their jobs when their spouses need round-the-clock care", Marianne Battista said, because they can't afford caregivers. Few insurance plans cover long-term custodial care, and many couples must cope with the loss of the sick spouse's income as well as staggering medical costs.
"The financial issues are just mind-boggling and very scary, and they're very hard to talk about with other people," WSA board co-chair Martha Scott said. "You're kind of on your own to work the system and find out who has good caregiving who can you afford and can fill in for you. The financial issues are very scary."
Throughout his illness, Charlie Battista has remained positive, Marianne Battista said. She credits that as a major reason the couple still has many of their close friends - something not all people dealing with major illness can claim.
"There seems to be an almost universal experience among spousal caregivers that your social life gradually disappears," Scott said. "People don't want to be around people who are sick. ... Gradually, people begin to feel uncomfortable. And for couple friends, the dynamic totally changes. So there's a sense of feeling really isolated, because nobody really understands."
Marianne Battista had surges of jealousy in the years it took her to accept her husband's illness. She would resent couples she saw in public who seemed to have such "normal" relationships, she said.
"It was a very lonely feeling for several years," she said. "With acceptance, that becomes easier. The anxiety is replaced by a peaceful feeling. I see a future for me now."
Battista is one of about 1,800 men and women who belong to the WSA which has members in the U.S., Canada, Ireland, Japan, Australia and Iceland.
"This well spouse group helps her out even if it's just moral support," Charlie Battista said.
While there is no local support group, Marianne Battista uses the organization's online forum and annual conferences to connect with other spousal caregivers.
œIt made me feel I wasn't alone she said. œI made friends. Friends who get it. We offer each other moral support and tips on how to deal with the little crises that come up in daily life.