Sharing the care
When Barb Nieland was diagnosed with chronic lymphocytic leukemia in the spring of 2009, she soon realized that she faced a long ordeal involving chemotherapy and a stem cell transplant.
But Nieland did not have to face it alone.
Share the Care, a program organized by the Aging and Disability Resource Center (ADRC) in Waupaca County, would bring Nieland’s family and friends together to help her during her recovery.
On May 4, Nieland was admitted to Froedtert Hospital in Milwaukee, where she underwent several rounds of chemotherapy. On May 9, she underwent the transplant.
“The chemo kills the CLL, but it also kills bone marrow,” said Nieland’s sister and one of her cargivers, Chris Machamer. “That’s why she needed the stem cell transplant.”
The treatment weakens a patient’s immune system so severely that she needs to be in a sterile environment during the early stages of recovery. Door knobs, light switches and faucets must be frequently wiped with sanitizers. There can be no pets. And the patient needs a caregiver on hand around the clock.
“I left the hospital on May 24 and stayed in a hotel in Brookfield to be near the hospital,” Nieland said. “”The doctors said it would take up to 100 days after the transplant before I could go home. I was able to come home on June 15.”
Nieland attributes her quick recovery to the attention she received from her caregivers, who were trained and organized through the Share the Care program.
Joan Otto, who is the Share the Care station manager at United Church of Christ in Fremont, met with Nieland and her mother in early April.
“Barb’s mom, Joan, and I have been friends for years,” Otto said.
Otto then held a meeting with about 20 of Nieland’s friends and relatives and explained how much help Nieland would need during her treatment and recovery.
“It’s overwhelming just taking care of the medical issues, let alone the caregiving side of it,” Nieland said. “The person who is sick doesn’t know who to ask or how to organize a network of support.”
Patients who are coping with catastrophic illness must arrange for rides to medical appointments, sort out medications on a daily basis and find a way to take care of household chores, even if bedridden.
Share the Care provides charts, schedules, calendars and lists of things that caregivers can do. It helps a family find potential caregivers and organize them into a team.
Nieland said the Share the Care team provided her with a caregiver 24/7 when she needed one without “leaving all the burden on my sister and daughter who were overseeing this.”
Pat Enright, with the ADRC in Waupaca County, said Share the Care has been working with local groups and churches to train station managers who then train and organize caregivers.
To find out more about Share the Care, contact the ARDC at 715-258-6400.