LOCKPORT – During her 20-year career as a volunteer for Niagara Hospice, Barbara Reed’s interest in people and an affinity for euchre have been as important as her nursing degree.
“My first love is patient care at home. That’s where everybody wants to be when they don’t feel good,” she said. “I do everything, from something as simple as sitting at a bedside holding somebody’s hand to maybe doing dressing changes or medication.”
Hospice services – from pain management, care at home, respite for caregivers and stays at Hospice House on Sunset Drive – are usually for people projected to have six months left to live. Sometimes the care is so good that people get better and live longer than expected, like one memorable client who loved to play cards.
“He was an end-stage cardiac. When I went to his home, he was in a recliner watching the soaps and waiting to die,” said Reed, who visited him for three years. “And it got to the point where I would get him dressed and take him to a friend’s house, and the three of us played euchre.”
Reed’s nursing career included being medical department supervisor at Harrison Radiator when the car parts company employed 13,000 employees and had three medical departments spread throughout the Lockport complex. Her experience with hospice is more intimate, and its services are not as well understood as she would like.
“Hospice does so much to improve the quality of life for a hospice patient that people, I think, people last longer because they feel better and they want to live,” she said. “So often the families will say after they got somebody in hospice, they say, ‘Oh, we should have gotten there sooner. If we only would have known, we would have gotten there sooner.’ ”
How did your friendship with the euchre player develop?
When his condition really started to deteriorate and he couldn’t come out any more, I picked his friend up, and I would take him to my patient’s house and we would play cards in the kitchen, and then as he deteriorated, he was in the recliner in the living room, his friend was on one side and I was on the other side, and we would play cards there.
Then after that when he got really bad, he was in bed, and we played cards with him in bed. We played cards on a Monday, and he died on Thursday.
The other team members on hospice were the ones who got him going so he was in shape to do that.
It was really so cute, so cute.
It was a game that all three of us knew. I think it was just camaraderie between the three of us.
What was he like?
He was kind of quiet and laid back, and he had a sense of humor.
His friend was a little more sedate. He could make wine out of anything, even potatoes, and he was a good cook. He made lunch for us every time. He was in his 80s. My patient was in his 70s.
Did you try the wine?
I didn’t drink the wine. I couldn’t do that when I was working. None of us really drank the wine while we played cards. He took me down to the basement to show me all the bottles he had there. He was just so proud of his wine collection and all the wines that he made.
Hospice took a picture of the three of us playing cards, and it was put on a poster as kind of a recruitment thing.
Is there something people don’t understand about hospice that you would like to explain?
I think a lot of people are afraid of hospice. I’ve had people say that hospice makes you die faster. But that isn’t true. We have patients who improve so much once they’re hospice patients that they have to be discharged. The patients have to be discharged because the insurance won’t pay the hospice benefit anymore. But then when their condition deteriorates again, they can come back to hospice.
Hospice does so much to improve the quality of life for a hospice patient that people, I think, people last longer because they feel better and they want to live.
I’m looking at a brochure right now of a young woman who got married. It’s a picture of her and her husband and the people in her wedding party. Hospice organized it in two days, I think. I know of another hospice patient who went to the casino. When she came back she was so excited. She lost her money, but she made sure she had enough left for dinner for her family. There was another patient that used to go to Kleinhans Music Hall.
People just don’t lay around waiting for death. Whatever they want to do that can be done, hospice works to make that possible.
I think a lot of people believe if they go to hospice that means they’re giving up. And they really aren’t giving up. What they’re doing is accepting: There isn’t any more treatment that can help, but they’re improving the quality of the patient’s life.
Any other stories?
I was sitting doing a vigil with the wife of the patient. It was an elderly couple, the husband was dying. She said, “Isn’t it a depressing job? Why are you doing this?’”
I said, “I don’t want you to be alone.” She just had a little smile on her face. I can’t remember if she did say anything. I just took away a good feeling that she had someone who wanted to be there who didn’t have to be there.
It just seems so terrible to be alone, especially in a situation like that. I think it helps them with their grieving if they know someone who was there who cared.
I run into these people occasionally when it’s all over. Maybe months later. They get a smile on their face. They’re so happy to see me. It seems like it brings comfort to them.
How does the vigil team work?
We provide support for the family when death is imminent within 48 hours. That support is around the clock. It’s been going on for years. It’s stressful for the family. If somebody from hospice is there, they feel better because the person from hospice knows what to do.
I went into a house for a vigil. There were 15 people in the house, family and friends; the patient was off to the side, in the bedroom. During the evening people were in and out of the room to touch or hold the person who was dying. And someone said, “We look so strong all of us out there. If you weren’t here, we’d be a mess.”
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