I’ll Hold Your Hand

By E. Napoletano

E. Napoletano is an award-winning author and journalist. Curiosity leads her to her greatest adventures and stories.

enapoletano.contently.com/

Providing peace and support through hospice care

A little more than six years ago, Sandy Downs sat down with her husband of 47 years, Perry, and gave it to him straight: She wanted him to be honest with her about her disease.

Perry was surprised. “She never wanted to talk about her disease,” he says, but that evening she asked for the unvarnished truth. “She wanted to know what was going on. What was going to happen to her.”

Perry sat on their bed, took Sandy’s hand in his and explained to her how frontotemporal degeneration (FTD), a debilitating dementia in the same insidious family as Alzheimer’s that attacks the front and sides of the brain, would change her life.

She would lose the ability to walk and speak. She would lose her independence and require full-time care. She would forget who he was, along with their own four children and the 30 children they’d fostered together. He hoped, however, that Sandy would always remember the two promises he was about to make her.

First, that he would take care of her. Second, that he would protect her dignity. And he’s kept those promises, thanks to the gift of hospice care.

Finding fulfillment

Mark Grzeskowiak, MD, lives his life in service to the dying.

Grzeskowiak, chief medical officer for JourneyCare, the largest nonprofit provider of hospice and palliative care services in Illinois, says he wouldn’t dream of going back to his days in private practice. “I used to see 26 to 28 patients in a seven-hour day,” Grzeskowiak says. “Working in hospice, I get to spend one to two hours with patients and their families and commit 100 percent of my time to patient care.”

“The dying part is actually very tiny. It’s about how they get there. We want this limited time frame to be as comfortable and happy as possible.”

These days, Grzeskowiak dedicates his time to helping patients live their best life within a limited time frame. “The dying part is actually very tiny. It’s about how they get there. We want this limited time frame to be as comfortable and happy as possible.”

Some days, that looks like figuring out how to get a patient to one last Cubs game. Others, it’s about demystifying how a disease progresses so patients and families know what to expect. Or it’s about reducing pain.

Hospice gives people care and support, but dealing with the dying isn’t for everyone.

“I’ve had some physician friends who have shadowed me and, after less than a full shift, they’ve admitted it’s not for them,” Grzeskowiak says. For some professionals, however, hospice is more than “for them.” It’s a lifesaver.

In 2014, on her heels after a split from an abusive relationship, 39-year-old Brianna Rodriguez had no self-esteem left. But she needed to get a job to support her children, so she became an in-home caregiver. There, she met a woman her same age in hospice in the end stages of breast cancer.

“In hospice, I saw Kristen choose to live for the rest of the days she had. It highlighted my choice to live my life instead of just being alive,” Rodriguez says.

Kristen passed in JourneyCare’s in-patient unit, which is where Rodriguez works now — a job that came at the urging of Kristen’s family. The dark days of 2014 behind her, Rodriguez is now a certified hospice nursing assistant working on her RN degree. “I want my hands to be used to soothe someone’s pain. My hugs to comfort someone,” Rodriguez says. “Once I put my whole life into service of other people, it renewed [me].”

Social worker Megan Carroll came to hospice seeking a new approach to her work beyond the walls of hospitals where she would see patients only once or twice during their stay if she were lucky.

Now, instead of a being a way station for social work cases passing through the hospital, Carroll has spent the past 14 years working in hospice as a wish-granter of sorts. For the past four years, she’s been supporting patients with Rainbow Hospice and Palliative Care, part of AMITA Health.

“I’m out in patients’ homes each day and acknowledging that this is where each of these people has chosen to die,” Carroll says.

The gift of hospice

Contrary to belief, hospice care is not just for someone’s few remaining days.

“Some people think they’re signing their death certificate when they sign up for hospice,” Carroll says. “But hospice isn’t for your last days. It’s for when there’s nothing more aggressive that can be done.” She feels incredibly lucky to be trusted with an honor like guiding a patient through such a difficult time.

“The look of ease on a patient’s face, even their family’s faces, when we arrive and they realize that we’re there to help — that’s the most rewarding thing,” Carroll says. It’s a look that Perry Downs has given multiple times.

“Hospice is always there for me,” Perry says. Whatever’s happening with Sandy, he can call and ask for advice. “They always reaffirm what I’m doing, and they’re there to guide me.” And he knows that as Sandy moves closer to death, he’ll be calling hospice more often than he already does.

Perry still holds his wife’s hand and gets a kiss goodnight every evening. Sandy still looks at him with peace and love in her eyes, even though her disease has stolen their conversations. Perry is unsure of the road ahead, but thanks to hospice, he has an educated idea of what to expect. And he has a team to lean on when some days are more difficult than others.

“The reassurance of someone walking alongside us who doesn’t deny what’s happening, that’s the true gift hospice has given us,” Perry says. “Knowledge is power, and the more I can understand the process, the more strength I have. That’s what helps me keep the promises I made to Sandy.”