Providing a "Life Link" at the End of Life

As an Alexian Brothers hospice volunteer, Tony Portogallo fed patients and swabbed their mouths and lips to keep them comfortable. Some, he says, just wanted to feel the sun on their skin. "I spent the last moments of people's lives just talking to them, holding their hands," he says.

This type of attentive personal care provided immense comfort to the family of Marilyn Carstens, who died in her Itasca home in July while in the Alexian Brothers Hospice Program. When her mom needed medication, Carolyn Cuttle simply told Donna Ruiz, the hospice nurse, and more medication was delivered. Donna made sure Carolyn and her mother's caregiver were on the same page.

Hospice allowed Carolyn to focus on being her mom's daughter instead of her only caregiver. In addition, it comforted Carolyn and her mom when they needed it most. Marilyn confided in Donna, sharing concerns, worries and fears when she was uncomfortable sharing them with her daughter. Donna listened, answered her questions and let her cry. Carolyn says having Donna with her when her mom was in the final stages of dying "was a gift from God."

"Donna was my life link and calm. She handled all the details which, at that point in time, just seemed overwhelming." Donna arranged for the chaplain to come. She arranged for the death certificate and contacted the funeral home.

"I never felt that we were Donna's job. I felt that we were her family," Carolyn says. "Donna gave us 120 percent every day and in every communication."

In his roles as CEO of the American Academy of Hospice and Palliative Medicine and as an Alexian Brothers hospice volunteer, Steve Smith says, "What I hear all the time is two things: This was the best healthcare I've ever seen somebody receive or I've received; and I wish I'd known about hospice and palliative care sooner."

Every Sunday evening during his volunteer shift at the new Hospice Residence, Smith sees families eating dinner in the kitchen, or laughing and chatting in the family room or in their loved one's room. A married couple - one of whom was a patient - recently celebrated their 62nd wedding anniversary. Another patient's eyes lit up when her cat and dog were put onto her bed.

The Hospice Residence provides a home-like environment to families who cannot care for their loved one at home so they don't have to return to the hospital. Replacing the intimidating hospital setting with this beautiful, spiritual environment makes an extremely difficult process easier, Portogallo says. "There's that fear that comes into play when you're a family member watching a loved one die. And you picture yourself in that bed, too. This residence allows people to be OK with what's going on. Everyone should be able to have that closure, that peace."