Written by Jessica Bliss for The Tennessean on Nov. 7, 2011.
Robert Fitts, 45, who suffered a traumatic brain injury 8-years-ago, becomes emotional as he talks about the time he crossed the finish line of an event after being injured at the family farm Friday Oct. 28, 2011 in Spring Hill, Tenn. / Sanford Myers/The Tennessean
Knowing that others deal with similar responsibilities and obstacles, Ashley Coulter, whose 23-year-old brother has cerebral palsy, dedicated her career to offering advice and support as coordinator of Vanderbilt Kennedy Center’s Tennessee Adult Brothers and Sisters (TABS) program. The organization is dedicated solely to educating adult siblings who have a brother or sister with a disability and will one day be in their care.
In addition to online resources and a yearly conference, the group meets the Third Thursday of every month to share stories and offer each other advice and support.
“We all have different situations, but the bottom line is we all have a sibling with a disability, and that affects you,” says Roger Kostiw, who recently took over care management for his 32-year-old sister, who was diagnosed with mental retardation as a child.
“I actually felt like I belonged.”
Robert Fitts grabs his limp left arm and drapes it across his lap. He lifts his left leg and moves it closer to his right. Then he adjusts himself in his chair.
“My personality has changed since my stroke,” Robert says, pausing for a moment to find the words to describe how. “I was my own boss for 10 years.”
“And now you’re our boss,” his sister, Alicia, 48, teases from nearby.
“She’s my boss,” corrects Robert, 45.
For the past eight years, Alicia Fitts has helped her parents care for her younger brother, who suffered a traumatic brain injury from a stroke. She manages his medication, drives him to therapy appointments and doctor visits, and handles legal paperwork.
“She’s our walking angel,” says their father, Bill Fitts. “She keeps us all from falling apart.”
Alicia Fitts is new to the world of “sibs” — the endearing term used to describe the adult brothers and sisters who care for disabled siblings — but she’s not alone.
About 4.5 million people in the United States have developmental disabilities, and there are many more who have suffered a disabling injury in midlife. Developmental disabilities are considered severe, lifelong disabilities resulting from intellectual and/or physical impairments that manifest before age 22, according to the U.S. Administration on Developmental Disabilities.
Today, individuals with severe disabilities are living longer — into their 70s and beyond. As a result, more and more siblings are assuming the primary care of their brother or sister when other family members, most often their parents, are no longer able to provide it.
As Alicia Fitts knows, taking on this responsibility means getting involved in day-to-day management of doctor visits and pill schedules, well before her parents will need her to assume full-time care for her 45-year-old brother. There are times when the task is overwhelming — and times when she and her parents disagree — but together they have their loved one’s well-being at heart.
“It’s incredibly hard, but it’s also incredibly rewarding,” Alicia says. “Someone asked me once if I ever get mad at God. I think I have once in eight years. The reality with Robert is reality. Nothing is going to change it.”
The morning of his stroke, Robert Fitts hopped in his Pathfinder for a normal Saturday-morning errand to Kroger. He repeatedly dropped the grocery list. His speech began to slur. There was a 4-inch blood clot in his brain.
Alicia was in the car on the way to a paint ball party for her godson when she got the call.
“It was surreal to hear the words ‘Robert’s had a stroke,’ ” says Alicia, who is the oldest of three Fitts siblings. “You would expect that from my parents, but not my 37-year-old brother. We weren’t sure he was going to live.”
For a week, Robert, an Edward Jones stockbroker and father of then-6-year-old twin boys, was touch and go. There was so much pressure on his brain that his hospital bed was kept at a 45-degree angle. He could not open his eyes or speak. He was restrained because he kept pulling out his IVs.
Robert was in rehab for 10 weeks before being released. Even now, he tears up as Alicia tells the story about his boys coming to the hospital. Robert suffered extensive brain damage and was paralyzed down his left side, but his right hand still worked. The boys threw a little football to him. He caught it one-handed and tossed it back.
When Robert went home, he had a full-time caregiver, and from April through December, Alicia and her parents traded off flying to North Carolina. Much of the medical and legal responsibility fell to Alicia. Navigating the government’s health-care system wasn’t easy, and it still isn’t, but her brother’s security drove her. She investigated power of attorney, researched Medicare and Medicaid benefits and prepared for the need to know more.
“With sibs, there’s this hunger for knowledge,” Alicia says. “Our parents went through this without an instruction manual. Sibs do their homework, not so they have all the answers but so they know what questions to ask.”
One of the questions they asked is if it was best for Robert to live so far away. He and his wife were separated. It was a strain for his family to keep flying to manage his care. So Robert celebrated one last Christmas in his North Carolina home, and then, in early 2004, Alicia moved him to their parents’ farm in Spring Hill.
For a time, Robert lived in his own home on the property, less than a quarter-mile drive from the main house. A caregiver stayed with him full time, and his dad went down to check on him daily.
In November, he moved up to the main house. He lives in his parents’ finished basement now. There is an electric stair chair that helps Robert move up and down from his bedroom. He wakes up at 8 every morning and calls his dad on his cellphone to help get him up.
Bill empties the urinal, gets Robert clean socks and underwear, and they go upstairs, where Robert has oatmeal for breakfast.
Robert spends most of his time at home reclined in a blue leather chair in the den watching CNBC or FOX News. He goes to bed at 8 p.m. Routine is important to Robert, and while Bill handles many of Robert’s daily needs along with a four-day-a-week caregiver, he leans on his daughter to guide him.
“She really taught me a lot about what’s going on with Robert,” Bill Fitts says. “She has a lot better rapport with him than we do. He will listen to her.”
Alicia orders Robert’s prescriptions. Every Saturday, she fills a week’s worth of pill boxes for him and her mom, who recently had knee-replacement surgery. On Sundays, she drives to the farm to drop off medication and go over the calendar.
She carries with her a black leather planner in which she keeps Robert’s schedule. Until recently, he had an appointment nearly every day — physical therapy, occupational therapy, water aerobics. Alicia, who lives in Brentwood, drove him to all of them. Now, he has just two appointments a week, but other areas of Alicia’s schedule haven’t lightened.
Alicia is part of what is referred to as the “sandwich generation,” meaning her parents are also at an age that they need care. Her mom has carpel tunnel syndrome and is mostly immobilized as her left knee mends. Her dad has Myasthenia gravis, which causes muscle weakness and hospitalized him for a week in October. That week, Alicia trekked back and forth to Spring Hill to spend nights with her brother. She slept on her parents’ couch, her head resting not far from Robert’s blue recliner.
It’s helpful for Alicia to have Robert and her parents under the same roof, but part of her wishes for something more for Robert.
“I’m not sure it does him justice,” Alicia says. “In some ways, Robert is very happy in his own house.”
The question of autonomy is one with which most families struggle — particularly as the disabled child becomes an adult.
“Safety is important, but siblings focus on independence,” says Ashley Coulter, who coordinates the Vanderbilt Kennedy Center’s Tennessee Adult Brothers and Sisters (TABS) program, an outreach and support program for those who care for their disabled siblings. “It’s a societal thing. Parents want them to be home and right there with them, and adult siblings want them to live on their own and navigate the world.”
Travel, Robert Fitts says, is his only vice. He has been to 27 countries, and, along with everything else, Alicia makes sure he can continue traveling. She has taken Robert to Kona, Hawaii, where marathon runners raised funds in his honor, and he cried as he walked across the finish line. The siblings are planning a trip to London soon.
Alicia knows that as they all age, the ability to travel, the types of places in which they may live, and the resources available to them in all likelihood will become more limited. But, she says, “That in and of itself should not also limit the choices that we can make in the short and long term to make the most of what is around us.”
Her approach to life is in the moment, a luxury she has because she and her parents have already planned ahead for Robert’s care.
“I know what the financial and legal arrangements are, the foundation, so to speak, which will allow me and whomever else may be involved in my brother’s life to build or rebuild whatever structure … is needed over years to come,” she says. “Even if I am no longer involved by choice or circumstance, even if his children, now 14, wind up caring for him or managing his care, that foundation should remain both solid and flexible enough to allow decisions to be made as necessary.”
Alicia knows it may come at some sacrifice on her part. She is single and believes it would be difficult to bring a significant other into her life given her responsibilities, but she doesn’t feel like she is giving up anything. She will continue to check items off her personal bucket list, just maybe not on the timetable she expected.
“Right now, I know I am exactly where I need to be, both for my parents and my brother,” she says. “And I will continue to try to quilt things together to allow myself to have a life and also help them.”
The Tutor system can provide much rehabilitation relief for patients suffering from stroke, CP, TBI, Parkinson’s disease, MS, upper and lower limb surgeries, SCI and many other disabilities.
The newly developed HandTutor and its sister devices (ArmTutor, LegTutor, 3DTutor) have become a key system in neuromuscular rehabilitation and physical therapy. These innovative devices implement an impairment based program with augmented feedback and encourage motor learning through intensive active exercises. These exercises are challenging and motivating and allow for repetitive training tailored to the patient’s performance. The Tutor system also includes objective quantitative evaluations that provide the therapist information to customize the most suitable rehabilitation program to the patient’s ability. Currently part of the rehabilitation program of leading U.S. and foreign hospitals the Tutors are also used in clinics and at home through the use of telerehabilitation. See www.handtutor.com
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