By Victor Greto
WILMINGTON — Ann Phillips’ day doesn’t start with the dawn.
It starts with the forced movement of her son, soon after midnight, when either she or a home health aide turns him over from one side of his body to the other, so he doesn’t develop bed sores.
If it’s the home health aide who turns the 22-year-old over every two hours, Ann still can hear what’s going on from her upstairs bedroom through an intercom system.
Her son is susceptible to seizures, so, like a new mother, Ann’s ears are permanently pricked for sound.
Four years ago, her son, Aaron Deede, suffered brain damage and paralysis from the chest down when he lost control of his car and hit a curb, then a telephone pole. His car flipped twice before he was thrown out.
Before she met and married her husband, Larry, Ann raised two boys, Aaron and his older brother Richard, as a single mother living in Long Island, N.Y. She worked in the Manhattan garment district as a production coordinator, supervising the steps from design through production. An artifact of her old job, a mannequin with no head, stands forlornly in her living room draped in fabric.
She had given up her New York life for the “slower” and “safer” life of Delaware 10 years ago, she says. What she found was an altogether new kind of life, whose foundation hinges on the condition of her youngest son.
For Ann, 46, tomorrow is only another word for today. Like an artist, she meticulously sculpts her son’s day: a structured regimen of pill-taking; wristwatch alarms that go off every half-hour when he has to drink or shift his weight to keep from developing sores; daily home-school lessons; meals peppered by Aaron’s obsessive-compulsive rituals such as making designs with sandwich ingredients; and time-devouring telephone calls to insurance companies, government agencies and rehabilitation centers.
There are frozen images of Aaron throughout the Phillips’ home: a black and white photo of him as a child throwing a ball; as a teen, sitting on his legs in a family photo; his senior portrait, all awkward smile and teeth; and in his wheelchair, now.
Ann also shapes Aaron’s personality, especially his outlook. His short-term memory mostly gone, Aaron tends to mimic Ann’s positive attitude.
Even so, much of the optimism is Aaron’s, she says. In the accident, his brain may have rattled inside his skull; his spine may have been damaged irreparably; and the recovery times after three ensuing operations — the most recent of which, doctors forced a steel rod down his back to help him sit up straight and not hunch to the left — seemed depressingly repetitious.
But through all of that, Ann says, “His heart hasn’t changed.”
Nor does Aaron seem to realize any intellectual limitations. “He missed all the experiences a teenager goes through to grow up,” from youth to manhood, Ann says. No post-teen existential angst. “He was always optimistic, but is even more so now. He never expresses depression or anger.”
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When Ann married Larry seven years ago, the two were set to become empty-nesters. Aaron was to be the last child, his or hers, to be successfully shooed off to college.
But then came the accident, the summer after high school graduation, as Aaron drove home from his job at a record store. He was attending Delaware Technical Community College to bring up his grades so he could attend the University of the Arts in Philadelphia.
From that moment on, for Ann and Larry Phillips, life became a present-tense phenomenon.
Larry stopped thinking about the future a long time ago. “It’s almost hopeless,” he says. “This is not what I signed up for.”
No one signed up for it. Larry knows that. He continues his job as a telecommunications manager at MBNA, continues his e-Bay Internet business selling stamps. When she has time, Ann packages and mails the orders Larry receives from clients.
“You do what you got to do,” Larry says. “I love my wife and I love my family.”
The first year of constantly caring for Aaron took its toll on their marriage, both say. They got counseling. They learned not to take common courtesy for granted, to interact and communicate more. Ann realized she could lean on Larry and that it was OK to ask for help.
“We got stronger,” Larry says.
Coming to grips with loss is not only in the purview of caregivers of the elderly, said psychotherapist Penelope Neckowitz, whose practice in part helps stressed caregivers. With those who care for severely disabled children or younger siblings, stress also comes from the loss of one’s dreams about the potential of the child or person.
“Part of what makes you able to function as an effective parent is the ability to dream and hope,” Neckowitz said. But with a freak accident that causes paralysis or brain damage, those dreams may become muted if not permanently silenced.
“I’m his mother and I can’t forget all the dreams he had for himself and all his hobbies and goals,” Ann says. “I look at it as making him as independent as possible,” she continues. “That’s as far as I look into the future.”
But that’s only part of the truth. One time, through the intercom, she overheard an aide ask Aaron about his future, what he wanted to do with his life. After noting the apathy of so many others hired to help Aaron, the simple question made her cry. So do the stillborn thoughts of past dreams: of Aaron’s wish to be a creative writer, an actor, a playwright.
The thought of Aaron alone, or with others who simply could not be as dedicated as she, nudges Ann’s thoughts toward a place where she almost never goes: “I hope he dies the day before I do,” she says. No parent wants to bury a child, but she fears the diminishing quality of his life when she is gone.
But the statistical likelihood of Aaron dying before herself is as fleeting a thought as anything that has to do with the future.
Life is about now, what we will do today, how Aaron can be occupied with tasks that exercise his brain. It is her life. “It’s still all good,” Ann says. “It’s just not what we envisioned.”
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By 6 a.m., on a warm morning in late August, Aaron is being dressed in his room by home health aide Karla Reeves, who helps care for him from 11 p.m. to 7 a.m. a few nights a week.
Aaron’s room was formerly the family garage. But Ann and Larry converted it four years ago into a teenager’s room of hardwood floors and music and movie posters; baseball paraphernalia, including signed baseballs and bats, mostly from players for the New York Mets; a computer and desk; videos, DVDs, CDs, stereo equipment and a TV; a hospital bed, two wheelchairs and a closetful of medical supplies; a mechanical lift that takes him into the living room of the house; and a machine that helps him to stand.
Although Karla has been turning Aaron every couple of hours, she checks him for incipient bed sores. She finds a few signs by blanching, or pressing on a part of his skin until it turns white; if it doesn’t turn white quickly, it may be a sign that a sore is developing due to poor circulation.
Karla removes Aaron’s support boots, which he wears throughout the night to prevent “drop-foot,” keeping his legs’ tendons and ligaments in their natural position.
Aaron’s legs spasm as she removes his pajamas; head bent forward by his pillow, he looks at his quivering legs almost quizzically.
During the 30 minutes it takes him to dress and clean up, Aaron’s watch buzzes once, reminding him to drink. He has to drink constantly to prevent a possible urinary tract infection. Each day, he downs four 32-ounce plastic bottles of lemonade, even waking himself up at 1 a.m. and 3 a.m. to drink.
Before he enters the bathroom, Aaron sets the timer on his watch for seven minutes; that’s the time he has to finish up his bathroom chores, from brushing his teeth to brushing his hair.
Aaron and Ann empty his catheter bag daily, while a visiting nurse changes his catheter every two weeks. Ann gives Aaron a suppository once a day.
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Aaron’s watch, insistently beeping and sending text messages like some mechanical gadfly, relentlessly structures his day.
Because of his brain damage, Aaron must always remain focused, Ann says. Each chore given to him forces him to concentrate and reach a goal. Otherwise, Aaron speaks and acts childlike and he can get lost in the activities.
One of Aaron’s essential chores is programming his watch each morning, just after breakfast. He painstakingly inputs the times into his desktop computer, calculating to the exact odd or even minute when he must lift himself up from the chair to shift his weight, or drink, or take his pills; or, this day, when to start preparing to go to the nearby Eden Rock Assisted Living Center and read the news, slowly and loudly, to the elderly. Everything.
He sometimes gets it wrong, like this morning. Instead of putting the times in chronological order, Aaron mixes them up.
“You’re being lazy,” Ann says to him, peering over his shoulder at the computer screen. “You need to write it all out before you put it into the computer.”
“Don’t get frustrated,” she murmurs as he meticulously readjusts the schedule. He then downloads it into his watch.
Ann and Larry also have their routines, especially at breakfast, before Larry goes to work.
Ann divvies out doses of more than a dozen pills each that Aaron takes four times a day. Aaron gathers them in the back of his mouth before gulping them down all at once. Larry unloads the dishwasher from the night before while Ann cooks his breakfast. Ann prepares for Aaron what he eats every morning: two pancakes.
But Aaron takes his time with his pancakes, cutting — no, sawing — them slowly; he pours syrup on them in ever-diminishing circles, with molasses-in-January-like speed. Then his watch goes off, forcing him into a weight shift.
He puts down the syrup, grasps the arms of the chair with semi-gloved hands that protect them from abrasion, and pushes himself up. He has to hold himself up for at least a minute. His record, he says, is seven minutes.
He’s still eating a half hour later when he has to do another weight shift. As a reward for eating well and relatively quickly, Ann allows him to read the sports pages.
Ann smiles crookedly at his concentration: “No matter how long you look, the Mets still didn’t win,” she says. Aaron doesn’t respond.
Aaron, lost in the box scores, delays the activities Ann set up for him that morning, including making clay beads and finding positive words to describe himself in a newly bought dictionary. They are on the A’s. Ann already has highlighted “artistic,” “advocate,” “actor,” “accomplish” and “able.”
“I’m losing my patience,” she says, watching him concentrate on the newspaper.
“Well, I can’t tell you where to find it,” Aaron replies. They laugh.
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A chunk of Ann’s day is taken up talking on the phone: placing orders for medical supplies; finding out what’s covered under the family’s Blue Cross insurance plan; what Medicare will cover, what Medicaid will cover; how to balance the benefits of the plans; and figuring out what the family has to pay for.
Unlike Aaron’s structured day, the answers to those questions change. After the accident, Medicaid paid for a lot of things, including services she knew nothing about, such as the home health aide and respite services.
But last year, Medicare replaced Medicaid, which pays for less services. She wrestled with Blue Cross over Aaron’s wheelchair. The company would only pay for one chair, an electric one, so the family had to buy another wheelchair on their own.
They took out another home mortgage and spent $40,000 to turn the garage into an accessible room for him after the accident. They also spent $32,000 on a van, then $15,000 more to convert it for wheelchair use.
Ann also spends time calling around to find classes and activities that will get Aaron out of the house. She signed him up for a creative writing class, karate, sled hockey, skiing at the Poconos, wheelchair dancing and hand cycling. She has taken him swimming. This evening, he will be attending the Wilmington Blue Rocks baseball game with friends.
No matter where they go or what they do, Aaron must be watched constantly. Mostly, it’s Ann who does that. Sometimes it’s her older son Richard, who had stayed for more than three years with Ann and her husband, Larry, to help care for Aaron after his accident. He moved out this past February to an apartment in Trolley Square.
Once, when Ann and Aaron had gone to Target together (she pushes Aaron in his wheelchair and Aaron pushes the cart), Ann let Aaron leave to go to the car while she checked out merchandise. While crossing the parking lot, Aaron’s watch went off and he stopped in the middle of the road to do a weight shift. When Ann left the store moments later, cars were backed up waiting for Aaron to move. “I went up to him and said he should go over there to do it,” Ann says. “He noticed the cars and got completely embarrassed when he realized what he’d done.”
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Larry has to leave his job early, by 3:30 p.m., in order to help Ann maneuver Aaron on to an “Easy Stand Glider,” which relieves pressure on his internal organs, stretches out unused muscles, reduces spasms and the likelihood of him developing osteoporosis.
And he loves it.
Although no insurance would pay for Aaron to continue physical therapy, Ann was able to get Blue Cross to pay for the machine instead.
The long process of getting him on the glider involves strapping Aaron on to a “trapeze,” which lifts and swings him around to the machine.
Aaron first sits at the machine. Larry hand-pumps the machine from behind Aaron, pushing the young man’s rear end up and forward. His 5 foot 11 inch frame slowly rises. But Larry pumps slowly, because, as Aaron’s body rises, muscles spasm.
“Stop!” Aaron says as he gets to a semi-erect position and his body starts to jerk. He steadies himself by placing his hands on a shelf at the top of the machine, and Larry pumps again until Aaron’s body is finally erect.
Aaron smiles: “You know what’s cool about this?” he says. “I’m taller than just about everyone.”
On the machine, which takes him even higher than his height, he towers over his 5 feet 4 inches mother and 6 foot Larry. While standing for 20 minutes, he plays Uno, a card game, with his mother. He always beats her, he says, and he does now, shouting to the ceiling, “She lost — again!”
When Ann and Larry bring Aaron back down to a seated position, they do it slowly, to prevent more spasms and to keep his blood pressure low.
When Aaron first began standing with the machine, it was a physically traumatic experience. Ann still needs to watch his face for a dramatic change in blood pressure. Aaron stands about three times a week, usually for a half hour at a time.
Back in his wheelchair, Ann decides to have Aaron wear his new sneakers. He has been wearing his special boots because of sores on his feet. But they were healing.
Although he gets the sneakers on his feet with Ann’s help, he ties them himself.
“You’re doing beautiful,” Ann says.
Aaron looks up and smiles: “You’re looking beautiful,” he says.
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While Aaron reads to seniors this morning, Ann goes to a therapy session. After she and Larry resolved their marriage problems, she continued to go on her own. She stopped for a while, but then, after Aaron’s last operation nearly a year ago, she resumed.
“When I heard what he had to go through again, I felt the wind knocked out of me,” Ann says of her son’s third operation. “To see him start all over again, this was the start of my decline.”
She fought with herself, she says. “Was I doing Aaron justice?” she asked. “Could I do it better? Is this really who I am?”
Tension. Impatience. With insurance companies that OK needed physical and cognitive therapies but only for a maddeningly short period of time. With family members who assume she has everything under control. With those who have the unabashed freedom to hop into a car and leave whenever they feel like it.
Worries line Ann’s face even as she smiles at Aaron’s playful remarks or rejoinders. But her eyes, sharply expressive through round, wire-framed glasses, seem to have accepted everything. Almost.
“He completely puts his life in my hands,” Ann sighs. “It’s a big responsibility.”