Daughter says at-home care a ‘godsend’ for Lemont parents with dementia

A Lemont resident is considering changing careers one day, thanks to the wonderful care a Joliet hospice is giving her parents.

Kathy Jenner cares for her parents in her home – and both have dementia. Jenner said her dad, Robert Jolly, 87, entered the serious illness care program at Lightways Hospice and Serious Illness Care in Joliet two years ago.

Jenner said her mother, Carole Jolly, 84, entered the program several months ago.

Lightways Hospice and Serious Illness Care, formerly known as Joliet Area Community Hospice, offers serious illness care program for people experiencing advanced, chronic, or life-limiting illnesses, including dementia.

Services may include managing cancer-related pain, symptom management, understanding goals of care and medication choices and care coordination, said Lisa Heiy, director of Lightways’ serious illness care program.

“A lot of times his behavior was extremely concerning and distressing, even for him, let alone us living with him. And I think that, without that support, I would have gone to the ER at times.”

—  Kathy Jenner of Lemont, whose father with dementia receives care from Lightways Hospice and Serious Illness Care in Joliet

Jenner said when a doctor recommended she seek either hospice or palliative care for her father, she researched her options and asked friends and colleagues — Jenner works in health care — for recommendations. Lightways was the top recommendation, so Jenner reached out.

[ Joliet hospice cares for non-hospice patients with chronic illness ]

“At the time, I was taking him back and forth to the doctor for his appointments,” Jenner said. “He needed frequent medication changes to control his behavior and his mood. And it was very cumbersome to do that way because patients with dementia often don’t do well when taken from their familiar surroundings.”

Jenner said a Lightways representative came to her home to evaluate Robert Jolley within 24 hours of making the call.

“Their opinion was that my dad did not meet the criteria for hospice,” Jenner said. “So they offered the palliative care route, which I wasn’t really familiar with. So they explained it, and it was exactly what he needed.”

Jenner called Lightways’ serious illness care program “a godsend.” Her father receives frequent monitoring with minimal distress from Nicole Hartley, lead nurse practitioner for Lightways’ serious illness care.

The frequency of Hartley’s visits depends on how Robert Jolley is doing. If he’s doing well, Hartley might not see him for a couple of months. But if he starts declining or his behavior starts escalating, she comes out every week.

“So it’s very, very flexible,” Jenner said.

Jenner especially appreciates Hartley’s ability to anticipate any declines or escalations with precautionary instructions for Jenner should she need them.

“A lot of times his behavior was extremely concerning and distressing, even for him, let alone us living with him,” Jenner said. “And I think that, without that support, I would have gone to the ER at times.”

Although Robert Jolley had “some heart issues in the past,” he is “extremely healthy” otherwise, Jenner said.

“His lab work is spot on,” Jenner said. “And his vital signs are always normal and stable. So we’re just, at this point, managing the dementia.”

Jenner said her mother entered Lightways’ serious illness care program when she began “sleeping all day and all night” and wasn’t certain if that was the progression of her dementia. Jenner mentioned her concerns to Hartley, and Hartley added Carole Jolley to the program.

Six weeks later, Jenner said she knew she made the right decision when her mother fell and started to decline. Hartley sent a portable X-ray machine to the home and the tools to get a urine sample, also at home.

It turned out that her mother had a urinary tract infection.

“Nicole was able to, once again, manage all of this without my mom having to leave the house,” Jenner said. “My mom is back to her baseline again, up and walking around.”

Jenner said she appreciated that Hartley was “just a text away” and arranged the necessary tests and care. She’s convinced Hartley’s help kept her mother out of the hospital.

“Of course, 1000%, we would have been in the ER,” Jenner said. “I even think my mom would have been admitted with the amount of pain she was in and then adding the UTI.”

Instead, Lightways “jumped on it really quickly” so Jenner could handle it at home.

“I’m so grateful to them,” Jenner said.

She’s also grateful that Hartley has consistently managed her parents’ care.

“We’ve developed a rapport,” Jenner said. “I’m a nurse, but I’m very respectful of my boundaries because she knows more and I’m grateful for any advice. Just when I think I know how to handle my parents, something comes up and I run it past her. Or she will have a very good solution or suggestion to try.”

Hartley said spouses are sometimes added to the serious illness care program, too, once one spouse sees the benefit to the other. The program is also divided into territories, so patients receive continuity of care, Hartley said.

Jenner said she’s seriously considering working as a serious illness care nurse one day.

“Living the life I’ve lived the last few years, I have a lot to offer that population of people trying to manage their elderly people at home,” Jenner said.

Lightways Hospice and Serious Illness Care is licensed in 11 counties in Illinois, according to the Lightways website.

For more information, call 24 hours a day, seven days a week at 815-740-4104 or visit lightways.org.