The Atlanta Journal and The Atlanta ConstitutionApril 5, 1998 Section: Gwinnett Extra Edition: The Atlanta Journal Constitution Page: J01 Memo: Home

Sue's story One woman who, at every fork, has refused to take the easy road

 Maria M. Lameiras Staff 

Though her husband, diagnosed with a debilitating disease, pleaded with her to leave and make a new life for herself, Sue Haulk-Bailey refused to budge.And despite numerous other challenges added along the way, 20 years later Haulk-Bailey is standing firm.In 1978, John Bailey was forced to quit work because of increasing disability from multiple sclerosis. At 31, he left the Sherwin-Williams Co., just three years after being one of the company's top five salesmen nationally. It was two years after his illness was diagnosed and nearly 10 years after the symptoms began It was devastating for Bailey, and he also understood the burden the disease would impose on his wife."I came home from work, and he said, 'Sue, you're 27. Divorce me, get remarried, have a big family, lead a normal life. Forget about me,' " said Haulk-Bailey. She told her husband that he hadn't asked for his disease and that she never would leave him.Angry and hopeless, Bailey went into a rage, chasing his wife around the house in his electric wheelchair. He hurled a flowerpot at her and even snatched up a kitchen knife, attempting to frighten her out of his life."We had a sunken living room, and all I had to do is go down there to get away from him," Haulk-Bailey said. "It wasn't funny, but I couldn't help but laugh because he would never hurt anybody. I told him, 'There's nothing you could do that would get me to leave.' He went through it all in that one afternoon and never mentioned it again."But that was only the beginning of the major adjustments Haulk-Bailey would make.

A full house

Comings and goings of the sick and the well

The bright, open rooms of Haulk-Bailey's Loganville home are full, but not of the gaggle of children she envisioned when the couple married on April 8, 1972.Occupying a back bedroom with floor-to-ceiling windows that give him a view of his wooded back yard is Bailey, now 51, who has been bedridden for 15 years. He has lost control of all of his limbs and can move only his head. It has been two years since he has left the bed for any reason other than to go to the hospital or a doctor's office.Down the hall and on the right is the bedroom of Haulk-Bailey's mother, Doris Haulk, 80, who suffers from the early stages of Alzheimer's.Through the ivy-patterned kitchen and to the right, another bedroom belongs to 88-year-old Eunice Hogan, Haulk-Bailey's sister's mother-in-law, who came to live with the couple shortly after their daughter, Jenni, was born in 1987. Hogan first came to help care for the baby, but is now legally blind and has a heart condition. She says Jenni is her "nurse and gofer."

The home also is a haven for 10 formerly stray dogs who roam in and around the house.In addition to caring for all of her charges, Haulk-Bailey is serving her second term as a Loganville city councilwoman, a post she sought when development began pressing into the semirural town that sits on the line between Gwinnett and Walton counties.Modest about the potentially overwhelming load she bears, Haulk-Bailey is quick to point out that she has a network of family members, neighbors and friends who regularly step in to share the load when she has to go to city meetings, run errands, take Jenni to dance lessons or simply take a shower.Haulk-Bailey's nephew --- and Eunice Hogan's grandson --- Craig Hogan, lives with the Baileys and helps Haulk-Bailey with tasks she would not be able to handle on her own. His brother, Kurt, a respiratory therapist who lives in Decatur, drops by to check on his uncle as often as he can. Their mother, Pat Hogan, makes one-week visits once a month from her home in Cleveland, Tenn., to take her mother-in-law to doctors' appointments and to help her sister with household tasks and their mother's needs. Another sister, Jerry Green, and her daughter, Sandy Yancey, who live nearby, stop in to help and visit several times a week, as does longtime neighbor Nellie Petty, who comes by almost daily to exercise on Haulk-Bailey's treadmill. She helps outby running errands or tidying up.Also, Doris Haulk goes every weekday to Daily Haven, an adult day-care center for Alzheimer's patients in Conyers.

Tricks of the trade

Years of trial and error yield expertise

Although she has structured her life around caring for others, Haulk-Bailey said she never envisioned herself in those roles."If you told me when I was 21 that I'd be cleaning bottoms and cleaning up vomit, I would have told you that you were crazy. I would have said I couldn't handle it, but here I am," Haulk-Bailey said.Her aplomb in dealing with everything from frightening episodes --- when her husband's chest muscles spasm so badly that he can barely breathe --- to dealing with a willful child, to dealing with her mother's bouts of confusion, has come from years of trial and error, Haulk-Bailey said. At first, she was frustrated by the seeming lack of information she faced when dealing with her husband's illness. Fortunately, she learned of resources through health care professionals and since has become a self-taught expert on the disease, according to family members. She also has picked up "tricks" over the years that make day-to-day caregiving easier for her and her family. Haulk-Bailey said she writes down everything she learns --- from where to get information to items that help her through her daily routine --- for a book she one day hopes to write for caregivers. For example, when cleaning her husband's room, Haulk-Bailey uses a disinfectant mouthwash instead of aerosol disinfectants because it is less likely to irritate the skin. She has figured out that coffee creamers or cups with curved rims help her pour liquids into her husband's mouth without making a mess. Because he suffers from Trigeminal neuralgia --- a burning pain in the face caused by the degeneration of nerves that feed directly into the brain --- he can't stand the touch of a glass to his lips. She has learned how to care for her husband's feeding tube and external catheter. She knows how to position the breathing machine that must be attached to his chest when his muscles begin to fail him.Although the family has had help over the years from visiting nursing aides who come each day to bathe Bailey, cutbacks in Medicare ended that service for the Baileys about two weeks ago.

"They say there is nothing I can't do for him," Haulk-Bailey said. And, although she knows how to bathe him, it is difficult for her, at 5-foot-3, to lift and roll her 6-foot husband by herself, even though his weight has dropped from 215 pounds to 140."If I just had John and I had no one else in the house, I could do everything they want me to do, but I still have the yard and the house and nursing and cooking and all the things a normal household has," Haulk-Bailey said.Alert and articulate despite his paralysis, Bailey said he is more concerned with how his illness impacts his wife and daughter than his own loss of function."The only thing that really gets next to me is to see Sue bottled up with all of this," he said.

A wife, a mother, a daughter

Crying in the shower, coming back for more

Haulk-Bailey does her best to shield her husband from the financial and emotional struggles the family faces because she does not want him to feel guilty about a situation beyond his control. "I take a lot of showers, and that is where I cry. I don't let him see me get upset," she said. Haulk-Bailey said the only reason the family is able to survive financially is that when her husband's illness was diagnosed, they turned to a lawyer and a financial advisor for help.Although she worries about her husband's medical crises, Haulk-Bailey said watching Alzheimer's disease strip away her mother's personality is much more difficult."Mother's a character. She has a quick wit and she will always get the last word. And it's usually funny. But this disease is robbing her of those things," Haulk-Bailey said. "She doesn't want you to know that she can't remember things, so she'll make things up, from what she had for lunch that day to where she went." Through it all, she strives to provide stability for her young daughter. Haulk-Bailey often finds her self in the role of "bad guy" with Jenni because her husband, although he tries to keep an active role, can deal with his daughter's behavior in only a limited capacity. By the time of his daughter's birth, Bailey could use only his left arm, but he would cradle Jenni there for hours on end. The bond between Jenni and her father is evident when she talks about their unique relationship. "When Mom is at meetings, me and my dad watch TV and talk," said Jenni, 11. "I tell him about my boyfriends, and we talk about sports and wrestling, things he likes that Mom doesn't like." Jenni is sometimes sad because her father can't do things with her that her friends' fathers do, but she takes comfort in one constant. "I always know where my dad is. When my friends' dads go away on business, they have no one to talk to, and I can always talk to my dad," Jenni said. Despite the difficulties she faces from day to day, Haulk-Bailey loves her family and can't envision herself doing anything differently. "I'm a wife. I'm a mother. I'm a daughter. I don't look at this as a 'have to,' I look at this as a 'want to,' " she said. "I could put my mother and Eunice in a nursing home, and I could put John in a nursing home and have a 'normal' life, but that's not me.

Copyright 1998 The Atlanta Journal and The Atlanta Constitution