Hospice Chronicles: Care for the Patient and Family Hospice programs often depend on volunteers to assist families with end-of-life care for their loved ones. In part two of a report on hospice volunteers, we follow Joe Haase and the care he provided to Preston Bennett, who suffers from Parkinson's disease and has symptoms of dementia.
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Hospice Chronicles: Care for the Patient and Family

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Hospice Chronicles: Care for the Patient and Family

Hospice Chronicles: Care for the Patient and Family

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This is DAY TO DAY from NPR News, I'm Alex Chadwick. Producers Dan Collison and Elizabeth Meister have spent much of this year following hospice care workers and what they do with terminally ill patients.

These particular caregivers are not medical professionals. They are volunteers. And Dan and Elizabeth are following them on their first assignments.

Their report is called Hospice Chronicles. Some listeners may have heard part of the story on yesterday's program.

Today we're going to meet another volunteer who discovers that hospice care often extends beyond the needs of the patient.

Mr. JOE HASSEY (Hospice Care Giver): Hi I'm Joe Hassey and we're ready to go in and meet Preston and Betty Bennett for the first time. We're here at their homes in Niles.

One o'clock in the afternoon on a rainy day, and I think Betty is going into town and do some shopping, and we'll hang out with her husband Preston, who's having some problems. And we'll see how we can help out a little bit.

(Soundbite of door opening)


Mr. HASSEY: Hi Betty.

Ms. BENNETT: How are you?

Mr. HASSEY: Good.

This is my first assignment. We went through our volunteer training. I guess it was six weeks or so ago now. So I'm ready for it. All you have to do is see how you can help out.

Ms. BENNETT: This is my husband Preston. He won't talk to you very much.

Mr. HASSEY: Okay.

Ms. BENNETT: Maybe not at all. I don't know.

Mr. HASSEY: Okay, hi Preston. I'm Joe.

Ms. BENNETT: He's Joe. You got a brother by the name of Joe, right?

Mr. PRESTON BENNETT: I don't know...

Ms. BENNETT: It's okay, sweetie.

He's had the Parkinson's 28 years plus. And then the dementia is what is the big, big problem right now.

Mr. HASSEY: So will he pretty much just sit there in the chair?

Ms. BENNETT: Yeah, he just sits there in the chair.

Mr. HASSEY: So I'm going to stay here with you, Preston, and Betty's going to go into town and do some errands.

Mr. BENNETT: I don't know...

Ms. BENNETT: Well, I get back as soon as I can.

Mr. HASSEY: I'm really not in any rush at all. So don't worry about it a bit.

Ms. BENNETT: Well, I appreciate it. I mean it's just things that comes up that I can't deal with him. You know.

Mr. HASSEY: Yeah.

Ms. BENNETT: And I can't leave him here, and I can't take him with me very easily. Because I took him out the other day. I had to go to the post office, and to the bank, and I stopped by the drug store, just run in and run right back out, almost.

And he locked the car door on me. I couldn't get the car door open. And I couldn't make him understand to open the door.

So I happened to think I had another set of keys in my pocket, so I got back in with that. So you know, he does things that he don't realize he's doing. He doesn't realize it.

So it's been a rough - rough years, and the last couple of years has been almost torture.

You be good, hon.

Mr. BENNETT: (Unintelligible)

Ms. BENNETT: You be good.

Mr. HASSEY: Respite care means giving the caregiver - Betty in this case - a chance to get out of the house and get some rest or go to lunch or do errands that she needs to do.

Mr. BENNETT: The gentlemen here is going to stay with you so I can run and take care of a few things. Okay? Okay.

Mr. HASSEY: I hear that you are a veteran of the Korean War. You remember being in Korea? That was a while back.

There wasn't any interaction with Preston, particularly.

Should I read something to you?

I read to him a little bit out of a book that Betty had. It's called "The Purpose Driven Life". You are not an accident. I am your creator. You are in my care even before you were born, says the Lord.

I'm a Buddhist, and my spiritual background encourages me to investigate death and consider my own death, consider the preciousness of human life.

To make the best use of your life you must never forget two truths. First compare it to eternity. Life is brief.

Do you want to sleep, Preston, or do you want me to keep reading?

He wasn't even aware of what was going on, so I read my own book to myself for a little while. And then Betty came home.

Ms. BENNETT: Well, it was helpful because I had some things I had to take care of, got some groceries and browsed around, didn't buy anything, but just took a little time for me, I guess.

Mr. HASSEY: I have no idea how Betty manages. Because I'm bigger than she is and she gets him dressed and puts him to bed and puts his pajamas on and everything.

Ms. BENNETT: Christmas Eve night was just about more than I could handle because he was asleep and he was wet, and I didn't know how I was going to get him dressed. But I got it done, but I paid for it the next day, because I was so sore from, you know, pulling on him, lifting on him and - but I finally got him some dry clothes on, so...

Mr. HASSEY: I felt like I'd done okay. I'd felt like I'd contributed. I felt good about it. But I look at it as helping Betty.

Hi, Preston. You remember me? I'm Joe.

Today, I was going to come and stay with Preston while Betty went to the dentist. When I talked to her this morning, she said that she had hurt her arm trying to maneuver him. So she had to cancel her dentist appointment today. So I'm going to just stay here for a short time while she goes to the post office.

Ms. BENNETT: You remember seeing him?

Mr. BENNETT: It's been about two weeks.

Ms. BENNETT: You remember seeing him?

Mr. BENNETT: Not very often.

Ms. BENNETT: Oh, Okay. Oh, not very often. Okay. Let's finish eating your oatmeal, okay?

I'm wore out. I'm literally wore out. I just need a little bit of space to get some personal things done that I have been neglecting.

Mr. HASSEY: She has made arrangements to have Preston put into respite care for five days. I said, well, Betty, that's a good idea. I think you made the right decision there. I think she's having a little bit of guilt about taking him out of the home.

Ms. BENNETT: I'm breaking. And I know I need to cure myself too. I may as well as take care of him.

Mr. HASSEY: How come you haven't called me?

Ms. BENNETT: Well, I just kept thinking every day it would get better. I hate to bother people, because I know they've got their own lives to live. It's just hard for me to ask for help, because I've always done it myself. But I'm learning.

Mr. HASSEY: I think I need to call Betty a couple of times a week, because she hasn't called me yet. I think I'll call her every few days, even while he's over at respite. So I think I need to participate a little bit more.

Ms. BENNETT: Well, I'm going to go run an errand and I'll be back in little bit. Okay? Okay? Joe's going to stay with you until I get back. I won't be very long. Is that okay?

Mr. BENNETT: Yeah.

Ms. BENNETT: Okay.

Mr. HASSEY: I don't know why she wants Preston here in the house myself. I mean, she can't manage with him herself and she's distressed about the whole situation, and she's really tired and seems to me like she'd be better off having him in a nursing home and she could go visit him every day, you know? But you know, there must be - there might be some reasons.

Ms. BENNETT: I made a promise, until I just can't go no longer. That's the way it'll be. Until whatever, whatever, how ever much time he's got, because I made that promise and I just can't break it unless it gets to - that I just don't have a choice.

(Soundbite of music)

CHADWICK: After staying for five days in a nursing home, Preston Bennett came back to his home. Joe continued to visit Preston and Betty continued to care for him until he died last month.

Our story was part of the radio documentary "Hospice Chronicles" produced by Dan Collison and Elizabeth Meister for Long Haul Productions. And you can hear the entire hour-long documentary. There's a link to it at our Web site, npr.org.

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