Without a Net

On the same day that an exhausted Richard and Dawn Kelso sparked national outrage by leaving their severely disabled son at a Delaware hospital, a Santa Barbara couple on the verge of meltdown made a similar choice.

Bruce and Louise MacKenzie admitted their daughter Elizabeth, 18, to a Goleta nursing home the day after Christmas, seeking a break from the 24-hour care she needs. The MacKenzies, who live in one of the few states that provide help in such crises, called their caseworker, and Elizabeth was admitted for 10 days--at state expense.

The Kelsos, who resorted to an emergency room when they were unable to find nursing help, have been charged with child abandonment and face a trial set for March 7.

“There are very few nurses available, period. But during the holidays there are no nurses available,” recalled Bruce MacKenzie, 56. “It was the same thing that happened with the Kelso family. . . . [But] we weren’t condemned for doing it.”

While families who care for incapacitated and fragile loved ones do not condone what the Kelsos did, most of them understand it. They see the incident not only as one couple’s cry for help, but as a sign of the overwhelming crisis in nursing care and the lack of government support for families struggling to keep disabled loved ones home and out of institutions.

“One day the Kelsos are going to be seen as heroes--if they can bring enough attention to the supports parents need to keep [disabled] kids at home,” said Ronald Cohen, executive director of United Cerebral Palsy of Los Angeles and Ventura counties.

Already, the prosecution has stirred controversy.

“I am just outraged that these parents were arrested and charged with a crime,” said Sandy Papazian, 54, who with her husband, Robert, 57, cares for their 22-year-old son, Joey, in their Westchester home.

“What if they absolutely freaked out and hit the child, or disconnected his respirator? I admired their solution. If you have an emergency, you go to the hospital--and they had an emergency. When you’re drowning, you don’t fill out the proper forms. You need to be rescued. They were drowning.”

The Papazians know how bad it can get. Joey has severe cerebral palsy and suffers life-threatening seizures. There was a time, Sandy said, when she “would wake up every morning and just pray to die.” And, throughout Joey’s multiple medical crises, she’s had to ask herself “if, in fact, I was right about doing all the mouth-to-mouth resuscitation in order to keep him alive, if I was forcing him to live a life that wasn’t really worth living.”

An estimated 25 million Americans are caring for disabled family members--children and parents with a range of physical and mental problems--at home, and almost uniformly they do it without adequate resources and support, according to the Maryland-based National Family Caregivers Assn.

The not-for-profit group, which provides information and support for caregivers, was founded in 1993 by Suzanne Mintz, whose husband, Steven, was diagnosed in 1974 with multiple sclerosis at age 31. Suzanne was 28. He is now in a wheelchair and requires help with every aspect of daily living, so Suzanne knows “the stresses and strains of care giving create situations that the average person cannot conceive of.

“The biggest impact, of course, is emotional, the sense of isolation. . . . There’s also the perpetual grief of care giving. When somebody dies, it’s final, but for caregivers, especially those caring for someone with a degenerative condition, there’s always a new loss.”

The Kelso case should be a wake-up call to parents, professionals and the community, said Nancy Miller, a Southern California co-coordinator for the association who also teaches psychiatry at UCLA and works with parents of children with disabilities.

Miller, who has written two books on the subject, stresses the need for parents, especially those with younger children, to “build a strong support network. . . . Our society pushes the philosophy that we should be self-sufficient, solve our own problems, keep them private, and that asking for help is a sign of weakness and failure.

“The Kelsos are not an individual aberration,” Miller said. “They represent a major ‘underground’ problem in this society; their action needs to be a call to action for all of us.”

The other area co-coordinator, LaVerne McReynolds of Redondo Beach, who cares for a mother in early stages of dementia, said caregivers may be “hungry for help” but “embarrassed to ask for assistance. They think, ‘I should be able to do this. I’m Superman or Superwoman.’ ”

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They need to know, she said, that “there are others experiencing the same pain, confusion, helplessness, joy, happiness.” For them, every day is a 36-hour day. Her tonic: setting aside time for meditation, which she calls her “holy selfishness.”

For 29 years, Linda Neuhaus, 53, has been a stay-at-home mother to Becky, who was born with the rare tricho-rhino-phalangeal syndrome, causing severe retardation and physical abnormalities. Through her, “We’ve learned who God is, that with his help we can get through one day at a time, and who we are, and that it really is OK to be different. With a disabled child, your life can still go on and be happy. It doesn’t have to be the end. It can be the beginning.”

Her husband, Bill, 54, sat on the sofa in their Venice home, an arm around Becky, a 50-pound wisp of a woman less than five feet tall. Cognitively, she is a toddler. She makes sounds, not words, occasionally sticking a finger in her mouth, a gesture her parents know means, “I want to tell you something.” She might lead them to the kitchen or point to an image in her picture book.

“We had to teach her how to crawl,” Bill said. “It took about seven years for her to acquire a lot of the skills a 1-year-old has.” He gave her a hug and said, “But you feed yourself, and you walk.”

To Linda, Becky is “a wonderful blessing. You could be sad for all the things she isn’t. We’ve never looked at it like that. I would not have chosen to have this child, but I wouldn’t change it.”

When Becky was 3 1/2, Jennifer, a healthy 9-pounder, was born. Throughout her pregnancy, Linda said, “There was a part of my heart I was trying to keep safe, holding back,” afraid to hope for the miracle of a child born whole.

Three decades ago, when Becky was born, many disabled children were institutionalized. “A social worker inferred that might be a good choice,” Linda said. “We didn’t consider it. You don’t discard a loved one because they’re not perfect.”

The Neuhauses never turned their lives upside down for Becky. As a family, they go camping and go out to dinner although, Linda said, “We might not choose a fancy, quiet restaurant.” As the two girls were growing up, they made certain each had special time with their parents.

“We wanted Jennifer to know it was OK not to be handicapped,” Linda said, but also that “a child with a disability isn’t necessarily someone who should receive more privileges.” “Or less,” Bill added.

“The place where [Becky] is in her mind is just fine, and in our minds it’s just fine too,” Linda said. “Her successes will be different, but it doesn’t necessarily mean her life isn’t happy and fulfilled. The value is just in the fact you’re someone’s child.”

Tal Solomon of Santa Monica, 36, also chose to stay home to raise 6-year-old Omer, who since infancy has had a disabling disease.

“He will probably be profoundly retarded. They’re not sure if he’s ever going to walk or talk,” Solomon said.

“Omie” is believed to have an intelligence level of about a 1-year-old, but doctors have never been able to diagnose his condition. Solomon and her husband, Gary, 43, want to have another child, but since Omie’s condition could be genetic, they hope to adopt. It’s frustrating, Tal said. “You don’t know what’s wrong, so your chances could be 1 in 4 or 1 in a million and everywhere in between.”

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Solomon doesn’t worry about bringing up a healthy sibling with her son--”It makes them better humans, more tolerant”--but she does wonder, “Which birth mother will choose us, knowing we have a special-needs child?”

Bringing up Omie while “trying to have a life” is challenging, Tal said. She has learned it’s OK to feel that “I need to get out of here. I can’t do this today.”

Still, she said, “I don’t feel sorry for myself at all. It’s not something I asked for, but life is messy, and everyone has something to deal with.” And, she added, “He’s taught me so much about myself, about endurance, about patience, about love.”

For the Papazians, life with Joey, who suffered oxygen deprivation at birth, has been a roller-coaster ride, with respiratory arrest a threat accompanying each epileptic seizure. Although not verbal, Joey is thought to have normal intelligence but has no hand or eye control and must be toileted, fed and dressed.

For years, before returning to work to assist her husband, a TV producer, Sandy was Joey’s primary caregiver.

“You get so sleep-deprived you become insane,” she learned, sitting at his bedside night after night, making sure he was breathing.

One night, alone with a sick Joey, she “reached the point of total physical and mental exhaustion. I checked him into a hospital--it turned out he had pneumonia--and stayed with him. It was some little relief, to know I wasn’t alone with a child who could die at any second.”

She counts among her blessings three older sons and a husband who love Joey--”we’ve formed a little family bond around him.”

His siblings never resented the time demands of a disabled child, as some do, and still help with Joey, although the Papazians can afford help today--when they can find it.

Having Joey, she said, “has forced me to reach above and beyond constantly. You are forced to be a better person. Our family won’t let ourselves be depressed by simple little things. We don’t have that luxury.” In 1997, she wrote a book about their lives, “Growing Up With Joey” (Fithian Press).

Disabled people do present challenges to their families, said Bruce MacKenzie, but “they’re valuable human beings,” even though some doctors “look at them like they’re not people.”

Elizabeth MacKenzie suffered catastrophic neurological damage from contracting the cytomegalovirus in utero. When MacKenzie kept asking what was wrong with her, one neurologist dismissed him, saying, “Your daughter doesn’t have a brain.”

She does, but it was partially destroyed by the virus. She can’t roll over, sit up, hold her head up. She is not verbal, but, MacKenzie said, “over the years she’s indicated to us and others that she understands quite a bit of what’s going on in the world around her.”

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In a wheelchair, and with the assistance of a school-provided aide, she attends Carpinteria High.

“She likes science, especially biology--she’s really interested in knowing what happened to her--and doesn’t give a damn about history.”

Sure, there have been “bumps in the road” of providing care for an 18-year-old who has swallowing problems and must be suctioned regularly, who eats through a feeding tube and is incontinent.

One of those bumps came Dec. 26. Unable to get home help, dealing with the holiday madness and with two other teenage children, the MacKenzies checked Elizabeth into a safe place--a nursing home--to give themselves breathing room.

Elizabeth has changed his life, MacKenzie said.

“I was a selfish SOB practicing law and living in a world that was largely materially driven. What I valued in people was how bright they were,” he said. “The thing I learned most from her was that you can’t rage to God on high. You just have to accept and move on.”

No longer practicing law, MacKenzie is a vocal and visible advocate for the disabled. He works to revamp the provider system and to get decent wages for those who care for the disabled in their communities.

“Pity,” he said, “is not what we’re after.”

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Monday: The crisis in care, and the battle over funding between parents who support institutions and those who want their children living at home in the community.