Living With Dying articles
From Caretaker To Hospice Founder - online extras
By Leah Carey
Jan. 3, 2017
Carol Anne Gillis was an only child and living far from any family when her mother was diagnosed with colon cancer in 1979.
“It fell on me. I am the nursing type, I always have been,” she said. At the time there was very little in the way of community support or public agencies to help.
So she began taking care of her mother 24/7. Through surgeries and severe internal burns from radiation. Through confusion and pain. Through bathing and feeding. Gillis did it all.
She engaged the home health agency for nursing care, but found the lack of any other type of community support to be severely lacking.
“I just kept saying, there’s got to be more to this. There’s got to be more help!” she remembered. “She would be calling me all night: ‘Carol Anne! Carol Anne!’ And I would get up and go in. So it was always interrupted sleep. I just was exhausted.”
And there was no break.
“When the nurses would come and they would try to do something for her, and I would run down to try to do a load of wash, she’d say, ‘Get Carol Anne. She knows how to do it. Carol Anne knows how to do it.’ So I didn’t even have a reprieve when they were there. She just wanted me.”
It was after her mother’s death that Gillis began to learn about hospice and founded the original hospice group in Littleton, New Hampshire.
It was a different program at the time – newly introduced in the United States, run by volunteers, and no funding or regulations from the government.
The volunteers could provide the type of everyday help that Gillis needed but couldn’t get from a home health nurse.
They could make a sandwich, do a load of laundry, take the patient out for a drive, or just sit and talk.
“It’s wide open as to what the volunteer will do. It’s what the patient wants,” she said. “The way I saw hospice working was that volunteers would come in and establish a relationship – a friendship relationship – especially if hospice is brought in early. You have to get to know the person.”
Drawing on the hospice model and her own experience, Gillis began offering extensive training for hospice volunteers.
“I think I had about 12 sessions [when I taught it],” she said. “That’s been condensed down over the year. They now do two sessions in one evening.”
Among the qualities that Gillis looked for in a volunteer was a deep, non-judgmental caring for other people. “They’ve had some experience with death and dying, but they’re no longer working through their own grieving process,” Gillis said. “We had a rule that you could not be a hospice volunteer until it was at least one year after your experience with the death of a loved one.”
Other qualities that she listed: Empathy, patience, gentleness, good listening skills.
“Someone who doesn’t have an agenda,” she said. “I guess those would be the things that would be paramount on my list.”
According to Gillis, hospice is most effective when they are brought in earlier rather than later.
“Coming in when the person is too sick to share, too sick to talk, and they just see the volunteer as a warm body that walks in, and another stranger that’s invading their space, it’s not usually well-received, nor is it as effective.”
The trouble is, as we have explored in recent entries in this series, that many patients remain in active treatment until very near the end of their lives. Hospice requires a person to no longer be in active treatment, which means that patients often won’t and can’t enter hospice until the point when they are far along in the process.
“We worked so hard trying to get people to accept hospice early,” Gillis said. “And it’s very, very tough … The patients themselves see it as a death sentence and they don’t want to admit it. So they put the brakes on. And then you have the family that doesn’t want to admit it either, so they’re putting the brakes on. So it does kind of thwart what can happen with it. But I’ve seen it working so beautifully.”
As a hospice volunteer, having the time to build a relationship with the patient and family pays dividends after the patient’s death as well.
“Part of their job description is to establish a relationship with the family, so that when the person passes away, there’s a relationship with that volunteer,” Gillis said. “And the volunteer usually will keep connected with the family for a period of time, to support the family. But if no relationship has been established, then when the job is done, the job is done.”