“ At the end, he was really more concerned about
everyone else. He wanted to do things for people
and tell them what they meant to him.”
Ann Hilgendorf, Joel’s mom.
family – especially his parents, his brother (Jacob), his aunt (Mary
Hilgendorf) – and many extended family members and his closest
buddies rarely left his side, and he cherished their time together.
Joel defied the odds for more than two years
by undergoing an aggressive treatment regimen at the
Sarah Bush Lincoln Regional Cancer Center. He knew the staff
well as Medical Director and Oncologist Abdur Shakir, MD, had
overseen his care for leukemia through the years. “He trusted
Dr. Shakir so much,” Stephen said. “They were very close, but
Joel was always quick to ask questions and he had different ideas
about the direction of his treatment at times.”
Joel was adamant about exhausting every option, but it took
a tremendous toll on his body. He reluctantly agreed to accept
hospice care when he found himself back in the hospital after yet
another treatment option had failed to improve his worsening
condition.
“The first thing he wanted to do after making that difficult
decision was to say goodbye to everyone at the Cancer Center,”
Ann said. “It was very important to Joel. He had been there for
six years and they meant a lot to him.” Upon discharge, Joel
was being transported home via ambulance, so he instructed the
ambulance driver to stop at the Regional Cancer Center entrance
so he could thank the staff before heading home.
“They came out and greeted him a couple [of people] at a time,”
Ann said. “They told us how meaningful his gesture was because
they often don’t get an opportunity to say goodbye.” Touched
by the gesture, Dr. Shakir said, “Joel was an amazing young
man with a passion for life. He was not a patient, but a friend, to
myself and the entire cancer center team.”
Once home, Joel developed a great rapport with Lincolnland
Hospice nurse Cassie Burnett, RN. “She made an immediate
connection with Joel,” Ann said. “It was nice to see how at ease
and comfortable he was with her, and she helped him kind of
forget about what was going on and how he was hurting. They
just carried on like all the other friends that were here.” Joel’s
Joel engaged his visitors in jigsaw puzzles and kept them on their
toes with his dry sense of humor. Yet, he could be stubborn at
times, Ann said. “He wanted to do all the things he used to, but he
physically couldn’t, and that’s what frustrated him the most,” she
remembered. Hospice staff proved to be invaluable support.
Joel’s caregivers helped fulfill his dream to take a final ride on the
family’s boat at Lake Sara in Effingham. “They set up our place at
Lake Sara with all his medial supplies and helped us figure out a
safe way to get him down to the boat,” Stephen said. “I think we
picked the hottest day in June to go, but we were able to get him
out on the boat for an hour and a half when it cooled off in the
evening.” Joel was grateful for the experience.
Learning that Lincolnland Hospice offers a Grant-A-Wish
program to terminally ill patients, Joel decided to use his wish to
have custom-fit golf clubs made as a wedding gift for one of his
closest friends. Hospice arranged for the fitting to occur at Joel’s
house so he could watch. “Joel had a great time critiquing his
friend’s swing and joking around,” Ann said. Giving away his
wish brought Joel joy.
“He wanted to let people know how he felt,” Ann said. “And
he made sure to tell them.” One of the last things he did was
nominate hospice nurse Cassie Burnett, RN, for the DAISY
Award for Extraordinary Nurses. He wanted reassurance before
he passed that she would be receiving the award – and receive it
she did, just one month later. Looking back, Burnett cherishes the
close relationship she developed with Joel and his family, and she
credits the entire hospice team for helping to provide exceptional
care. “It was a privilege to care for Joel, but it was also challenging
because he was young and wanted to do so much. He was a friend
and we wanted to do everything we could possibly do for him,”
she said.
“For a long, long time, he wouldn’t go to sleep at night because
he was afraid he wouldn’t wake up,” his father said. “But I think
he finally made peace and he let himself rest. He touched a lot of
people with his attitude and his desire to live and to fight.”
Lincolnland Hospice cares for people in 20 c ounties in East Central and Southern Illinois, regardless of their ability
to pay, plus it provides comprehensive bereavement services. For more information about Lincolnland Hospice,
call 1-800-454-4055.
Information Systems 1990
november 2017 healthstyles
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