Amber loved birthdays— and tacos!
When Pam DeGolyer’s daughter Amber was hospitalized with COVID-19 in November 2020, visitors were not permitted. Being apart was especially difficult because Amber, then 42, was born with Down syndrome. She had always lived with her mom, and she barely spoke to the hospital staff for six days—until Pam was allowed to be with her. After another six days, Amber recovered enough to go home.
“Amber loved people. She was a hugger,” says Pam, “She was a party girl! She loved birthdays, music, Disney books and her Hope Class.” Formed by families at their church whose children had disabilities, the Hope Class brought families like the DeGolyers together in faith to share news, have fun and support each other.
As 2021 began, however, Amber began to have stomach pains. Tests showed sad news: A previous cancer had returned, and her doctor said she had only weeks to live. Two days later, Pam called Agrace.
Home is Where Your Friends Can Visit
Around Valentine’s Day, a team from Agrace Hospice Care began to visit Amber at home.
“They were great at listening and asking the right questions,” Pam says. “If Amber needed a medication change, they were right on top of it! If we needed anything for her personal care, it was there. They brought a hospital bed and we put it up in the living room.”
“They made such good suggestions about how to position Amber in bed and how to move her without causing her distress,” Pam adds. “They were very sweet to her.”
With hospice care coming to her at home, Amber could stay where she was familiar (routines were important to her). Unlike her time in the hospital with COVID, her sister and brothers and her church family could visit. Pam notes, “Her brightest moments of the day, when she wasn’t feeling very terrific toward the end, were when people would come and see her.”
‘That’s What We Do’
One night, Pam was worried about a change in Amber’s breathing, so she called Agrace’s triage line. She remembers, “The night call nurses came out—at 11:30 at night! They checked herout and told me everything was alright. They never made me feel like I was overreacting. They made me feel like, ‘That’s OK. That’s what we do.’”
“I’d like for people to know what a help it is to have Agrace go through a difficult time with you. It’s OK to reach out. You can’t do it alone.”
In all, Amber and Pam had Agrace’s care for nearly three weeks. “I really feel like I couldn’t have got through this without the help they gave me,” Pam notes. “They helped my heart have peace.”