Uncategorized

February 28, 2008

Good buds: Colleagues make working possible for UW staffer after disabling illness strikes

Bud Jones wondered what all the fuss was about. But of course it was about him.

And it was no fuss, really. Just people — faculty and staff members and graduate students — coming together like family to help one of their own.

His name was James Jones, but people called him Bud, and he was the graduate program assistant for the Department of Speech and Hearing Sciences. He died of amyotrophic lateral sclerosis, or ALS, on Dec. 29 at the age of 62, only about a year after his initial diagnosis.

He worked at the UW for 10 years and stayed on the job through most of his illness with the help of campus friends and colleagues, from his own department to Disability Services, the Benefits Office and Rehabilitation Medicine.

Jones — let’s call him Bud, too — was an extrovert. Tall, thin as a dime and finger-snappingly animated, he had a flamboyant manner and a resonant voice that betrayed his Texas roots. He took care of his aging mother, Ruby (who preferred being called Tina). He was gay but usually unattached, and was clearly fond of his job and his colleagues in Speech and Hearing Sciences, viewing them much like family.

“He was a sweet, gentle person and a can-do sort of a guy,” said Bob Carpenter, professor emeritus. “And he was a good source of information for the students. If he had any failing it would be that he spent too much time with them.”

Friends described Bud at work as a creative troubleshooter who was nonetheless a creature of comfortable habit.

“He was the most schedule-driven person, very regimented,” said Gabrielle Gruber, the department’s counseling services coordinator, who bonded with Bud at work. “We’d always go at 10 in the morning to Bulldog Coffee for our coffee every day.” She added, “I would walk with him arm in arm, which was very nice. Sort of European and so old-fashioned, I loved it.”

But in the fall of 2006, things seemed to change for Bud, and his department friends couldn’t help but notice, “like a dentist notices your teeth right away,” Carpenter said. He tired more easily, and his walk had taken on a “clomping” quality, with his feet seeming to slap the floor. His speech was beginning to slur.

Robert Miller, a senior lecturer in the department familiar with ALS from past work with VA patients, said when he noticed this, “I just kind of went ‘Oh no.'”

Even then, so early on, concern grew among the faculty and staff. It fell to Gruber to nudge Bud to see a doctor. When he did, the doctor referred him to a neurologist, making the appointment himself on the phone while they talked. Subsequent referrals sent Bud to the Virginia Mason ALS Clinic.

Carpenter often accompanied him on doctor visits, and took notes. “It was very important for a second person to be there, for a second set of eyes and ears,” he said. Nancy Alarcon, a senior lecturer and the Speech and Hearing Sciences clinic director, later went when Carpenter could not.

Bud reacted to his diagnosis “rather matter-of-factly,” Carpenter said. “When you get news like that it takes a while. You listen, and you are kind of numb.” Privately, of course, Bud was devastated by the diagnosis. He did not tell his mother, whose own health was deteriorating.

Bud kept working, but department friends worried about his comfort and offered their talents to help. Kurt Johnson, a professor of rehabilitation medicine who also consulted, said, “They — or through their network of colleagues — had a great deal of expertise in ALS and in disabilities so they were able to provide him with a level of support and understanding that I think was critical in allowing him to work with ALS for as long as he did. It was the primary focus of his life. For Bud, it was his clear desire to work for as long as he could.”

They were organized about it, too. Pat Dowden, clinical assistant professor, arranged a meeting where Bud’s friends divided themselves into two work groups: one for his job — to make it physically easier for him to work despite declining abilities — and one for his needs outside work. Paul Menzel, their webmaster and designer, even created an online program where people could sign up for and track needed volunteer tasks.

Dowden advocated for Bud and connected him with campus resources, including Disability Services. Shaheen Virani, a disability case manager who worked with Bud, said part of their help was in “redistributing some of his job tasks, so that we could maximize what he could do when he’s at work.” A special desk was brought in, and his office was rearranged to accommodate Bud’s need for a walker, and later a power wheelchair. Benefits Consultant JoAnn Wuitschick also helped Bud make sense of the paperwork involved in filing for disability status.

Dowden, whose professional expertise is in assistive technology, particularly in communication, was uniquely qualified to help when Bud could no longer speak clearly. She helped Bud get and then customize a communication device that would speak what he typed, joking that she wished she could give it a Texas accent. Dowden also set up phone and Internet connections at Bud’s home, so he could contact others using the device if he needed to.

Alarcon also helped him at home, especially after Bud admitted that one day he had been “really, truly scared” when he was unable to get off his couch for several hours. She helped connect Bud with a Lifeline device enabling him to radio for help anywhere he was. Mary Wood, assistant to the chair, who lived nearby, signed on as a first responder for Bud, as did Alarcon and Joan Hanson, clinic manager.

Alarcon said another “cornerstone” in helping Bud was Deb Harper, the department’s fiscal specialist, who worked near Bud. “She became our eyes and ears,” as his impairment increased, Alarcon said. “It had to be incredibly difficult for her.” Also ever ready to help was Rich Folsom, professor and department chair.

During this time, Bud’s mother’s health declined, too. His brother, J.C. Jones, with whom he stayed at the end, said, “Bud was trying to take care of her and take care of himself and he didn’t want her to know what was wrong with him. He told her it was something wrong with his back.” She died in September, at the age of 90.

Alarcon accompanied Bud when he had a feeding tube installed in his abdomen, and the department arranged for a room where he could feed himself in privacy. Bud’s cluster of friends continued to see to his needs as the months went on. Department graduate students, also fond of Bud, held a walk in his name with the local ALS Association’s Evergreen Chapter, covering Seattle, at Seward Park in late summer. Other staff and faculty members contributed to a beautiful quilt in his honor.

As autumn deepened, it became clear that Bud needed to find a full-time care setting. Though Gabrielle Gruber often was the point person for difficult conversations with Bud, it was Robert Miller who sat down with him to discuss the future.

Miller remembered, “I said, ‘Tomorrow’s not going to be easier than today. This is going to be somewhat relentless.'” Bud agreed and asked to see Mary Wood, for a conversation about leaving his job. He chose to travel to Florida to live with his brother and his family.

Throughout his illness, Bud remained grateful for all the help. “Never did I ever hear a complaint!” Miller said. “He was so touched that people were willing to step up… He’d say, ‘Why are people doing this?’ And I said, ‘Bud, it’s because it’s family, and people want to do this for you. Just sit back and accept it.'”

Bud’s friends found a bit of closure by celebrating him and sharing memories during his last week of work. On his last day they had a party and watched his favorite movie, Some Like it Hot.

His brother accompanied him to Florida on Dec. 8. Bud died on Dec. 29.

“You wouldn’t believe all the cards we got, with everybody saying how they’ll miss his smile,” J.C. Jones said in a Texas drawl not unlike Bud’s own. “He loved working there. Everybody should have a job like that.”

There was sadness at Bud’s passing, to be sure, but also relief that his suffering was over. And some comfort for his friends in the knowledge that they had helped him.

“We all got to know Bud better,” said Dowden. “And I saw aspects of my colleagues here that were amazing.”

Carpenter said, “Everybody, I think, put themselves out. And that’s what you have to do.”

Miller agreed. “It’s not just a story about Bud, but about community, and what people are capable of. I was so touched by this department, this University. It renews some faith, I guess.”