Remembering ‘Zackie Boy’
A mother’s anguish as her child is placed in a nursing home
Story and photographs © Robin Rayne Nelson/ZUMA Press, All Rights Reserved
Powder Springs, GA — Nola Sayne greeted guests at the memorial celebration for her son Zachary, who died a few days into 2013.
Few of the guests had actually known Zach. He died where he had lived for the last 15 years – in a nursing home 200 miles away from his Georgia family.
Nola wanted the afternoon to feel more like an open house than funeral. “It’s to be a celebration for Zach,” she said.
Nola’s personal knot of emotions was a twist of grief, sadness and relief, all tinged with an undercurrent of guilt for placing her son in a skilled-care facility when he was ten years old.
“I always felt I should have done more to keep him home and care for him here,” she said quietly, even though she admits she had few options at the time.
“Zach was born five weeks premature. It was an emergency c-section and I was told everything was okay. I later learned he was born ‘blue’ and they had to give him oxygen for ten minutes to bring him back,” she said.
Nola brought her son home unaware of any problems. But Zach was her second child and she soon knew something wasn’t right.
“He didn’t make eye contact, he didn’t try to hold his bottle or try to lift his head,” she recalled. “His doctors eventually said he had spinal meningitis. After I got his medical records from the hospital we went to a see a neurologist. The doctor walked into the room and said, ‘He has cerebral palsy.’ I was 23 years old. I didn’t even know what that was.”
After several years of therapy, Nola enrolled her frail son in a special school for severely handicapped children. He never crawled or lifted his head. Typical milestones in child development never arrived. Within a year he began having seizures.
By then, Zach’s father was out of his son’s life. “He couldn’t handle it. He was never involved with his son,” Nola said.
“Zach eventually was able to do a few things that indicated he understood me. He could push a button or move a joystick with his hand. He responded to what I told him and he knew when I scolded him,” she said.
Zach laughed when she tickled him or whispered in his ear. “I used to lean over and say ‘Zackie boy, Zackie boy’ and he would just laugh and laugh. He was always wanting me to hold him or touch him. But he never spoke.”
While Zach was at the special school and an after-school daycare program, Nola was able to work; first as a customer service representative, later as a legal secretary.
“Whenever I applied for a job I explained my situation as a single mom with a seriously handicapped child. There were many times I had to leave early. I was always in trouble in my first job for leaving early or missing work because of Zach’s health problems. My other bosses were very understanding and kind.”
Caring for Zach when he was home was a full-time job in itself.
Nola’s son Josh was older by 22 months. “He learned to be very independent. I taught him to cook and do his own laundry when he was nine. Josh had to take care of himself because I had to take care of Zach.”
“I was Zach’s arms and legs and voice. If I fed him I couldn’t put him in a high chair because he’d fall over. So I sat him in my lap to feed him. When he was sick he slept on my chest so could feel him. I’m still a very light sleeper.”
“I carried him everywhere — to the video store, the grocery store, everywhere we went until he was 10 years old. He only weighed 30 pounds.”
Zach had a fragile immune system and was prone to constant infections. He had pneumonia numerous times, seven in his tenth year alone.
“That’s when doctors realized he had been aspirating food into his lungs when he swallowed. Part of it would go into his esophagus but part of it went into his lungs. The doctors decided he needed a feeding tube.”
After the tube had been placed, Zach gained nearly a pound every week. Lifting and carrying Zach soon became a struggle for Nola.
The day care center’s director called and said the staff was uncomfortable with Zach’s feeding tube. They wouldn’t keep him anymore, even though they had cared for him since he was six months old,” Nola recalled.
“The other daycare centers in the area refused to accept him,” Nola said. “My mother had been helping with Zach for all these years but she moved to Arizona. Zach’s father was still completely out of the picture. My support was gone.”
Nola placed newspaper ads hoping to hire someone who could care for him after school. One woman, an empty-nester, agreed to take the job. It didn’t last long.
“She called me after the first week and said, ‘I can’t do this anymore. Please come get him.’ I drove to her house. Zach was in his little carrier, sitting on the front porch. The woman opened the front door a crack and was crying. She said, ‘I’m sorry’ and closed the door. That was it.”
Nola tried for weeks to find another caregiver for her son but had no luck. Her understanding boss graciously allowed her to bring Zach to work with her.
“It was a metal fabricating plant. Zach slept on a pallet near my desk while I worked. It was noisy and dirty but the guys that worked there were wonderful to us. They were like brothers.”
Nola knew it couldn’t continue like that indefinitely. She moved in with friends to save money. She applied for Social Security benefits to help with Zach, but her application was denied.
“I didn’t have day care anymore. I didn’t have anyone to watch him. I had to figure out what to do. Zach had gained nearly 25 pounds because of his feeding tube. He had grown out of his wheelchair. And now every time we went somewhere I had all this other stuff to take, the feeding pumps, the equipment, all his medicine. We became even more confined.”
“A social worker asked if I’d ever thought about placing Zach. I didn’t know what that meant. She said, ‘You know, putting him in a facility.’ I told her I didn’t know I could do that.” The social worker mailed Nola a list of nursing homes in the southeast that accepted children.
“There weren’t any facilities in Georgia that would accept children. There was one in North Carolina that had a long waiting list. There were some places in Florida. Alabama had two that were specifically set up to care for disabled children,” Nola recalled.
“I have to admit that part of me was relieved. I felt like I’d had a newborn with me for ten years. This home had 24-hour nursing care and I thought they’ll take care of him the way he needs to be cared for,” Nola recalled.
When the time came to move Zach into the facility, her friend drove Nola and her boys on the three-hour journey.
“It was absolutely horrible. I felt like an awful mother but I didn’t know what else to do. I had no options. My friend kept saying,’ This is the right choice. The kids at this place are always clean, most of the staff have worked there for years and they obviously love these kids.’
“And she asked me, ‘What are you going to do if you don’t do this? Do you have a bunch of money to pay a nanny or nurse to watch him?’ I didn’t.
Nola, Josh and her friend got Zach installed. His ward was a large room with several beds and large cribs, medical equipment and stuffed animals. The home accommodates 54 children.
The drive back to Georgia was somber. “My friend and I cried the whole way home,” Nola said.
Her tears, sadness and self-doubt festered in the weeks that followed. Her doctor prescribed anti-depressants. She began to drink.
“I felt very alone. I learned later that Zach had grown very depressed too. At first I called every night and talked to him. I drove down every two weeks, sometimes every week for a day or two. And Josh blamed himself for his brother moving to the home. He said if he had helped more at home then Zach could have stayed with us.”
Nola remarried a year after Zach was moved to Montgomery. She had known Jeff since high school. He was totally supportive and they often drove together to visit Zach.
“I felt like nobody else understood. Having a special needs child, you’re already in a small minority. When people learn you’ve placed your child in a nursing home they looked at you funny so most of the time I tried to avoid talking about it. They wonder, how could a parent do that?”
“It was too much to explain. People would ask me if I had kids. If I said yes and they asked their ages, they would say, ‘oh yeah, those high school years,’ or bring up drivers licenses or ask about college. It would lead to questions I didn’t want to answer. It was just easier to not talk about it.”
The weekly drives to Montgomery eventually became every three weeks. Usually Nola drove alone. Sometimes Jeff joined her. Now and then Josh would come along.
When Nola arrived on Saturday mornings she would tenderly brush Zach’s hair and as she talked to him. Sometimes he would open his eyes when he heard Nola’s voice. Mostly, Zach slept.
Nola routinely checked the feeding pumps that kept him nourished. She fluffed his pillows and made sure he was as comfortable as possible, carefully lifting his brittle and atrophied arms and legs. Sometimes Nola or Jeff lifted him in his wheelchair for a ride to the family room where they could take turns reading children’s stories to him. When weather permitted, they visited the home’s courtyard for a change of scenery, always mindful of bright sunlight’s effect on Zach’s pale skin and sensitive eyes.
In all the years of visits, the goodbyes never ceased to be difficult. Nola would kiss Zach’s forehead and whisper ‘I love you’ in his ear. Zach would sometimes respond with a blink of an eye. As dusk approached, Nola would head back to the interstate for the long drive home, always with a heavy heart. She was grateful for the excellent care her son was receiving, but in recent years there was a constant voice in her head urging her to bring Zach back to Georgia.
Zach had been in Alabama so long that he was now a resident of the state. Nola had to file for guardianship in order to move him back. In the fifteen years since she placed Zach in the home, not a single skilled-care facility for children had opened in Georgia. “Nothing had really changed. The waiting list for Georgia’s Medicaid Waiver that provides funds for disabled residents had grown to nearly 6,000 names,” she said.
With years of inactivity, Zach developed scoliosis that created problems with his lungs and heart. His breathing became labored. There were numerous visits to the Montgomery hospital’s emergency room. Nola always stayed with him, often for days at a time. “I wasn’t going to leave him in the hospital without a voice,” Nola said. “Bad things happen when you can’t talk.”
In the last few months as Zach’s condition deteriorated, Nola sensed the end was near. “His fingers were touching his arm and his toes were completely curled under,” she said.
“I wasn’t praying for healing anymore. I was praying for God to pretty much just take him. I had talked with Zach on some of his hospital stays when it didn’t look good. I held his hand and I told him, “You don’t have to stay here. It’s okay. You can let go.”
“At Christmas, we drove down to visit and bring his gifts. They were brightly colored pillows and pajamas. He had quite a pillow collection since that’s how we shifted his position in the bed, with pillows.”
The next week, Zack was back in the hospital for more breathing difficulty.
“The doctors couldn’t find anything specifically to treat but wanted to keep him in the hospital just to be safe. I fought that,” Nola explained. “His condition wasn’t going to improve. They couldn’t cure him. If he stayed there he would be on oxygen 24 hours a day and would just live there. They were constantly doing IVs in his armpit because they couldn’t find veins, it was horrible.”
“Zach was miserable in the hospital. He wanted to be back in the nursing home. I told the doctors, ‘If you’re concerned about liability don’t worry, I’m not going to sue anybody. I reminded them of the ‘Do Not Resuscitate’ order I signed. I said, ‘We can’t keep Zach around forever.’ I didn’t want anyone to be a hero. Zach was soon back in his own bed in the nursing home.”
Four days after New Years, nursing staff called to tell her Zach tested positive for flu. His doctor assured her Zach would be treated in the home rather than subject him to another hospital stay. Nola was grateful. She planned to drive down first thing the next morning.
The call at 4 a.m. jarred her awake. “Zach’s breathing had become much worse,” she said. “The ambulance was called to rush him to the hospital. I cried and called my mom, who had recently moved back to Georgia. She agreed to go with me immediately.”
The nurse called again twenty minutes later. Zach was gone. He died before the ambulance could get there. It was over.
“It was the call I had imagined I don’t know many times, wondering how it would come,” Nola reflected. “I wanted to be there when he died. But he didn’t die alone. He died in his bed, at home, where he was comfortable.”
It will take time for the sadness and the grief to lift, and the guilt that comes with placing your child in a nursing home.
“I did everything I knew to do,” Nola said. “But I will always ask myself if I couldn’t have done more.”
Nola and Zachary Sayne’s story is featured in ‘Not Home,’ a documentary on children who live in nursing homes by filmmaker Narcel Reedus. I was privileged to serve as the still photographer for this project.