With Grace...

Hospice nurse: 'It felt like I was doing something good'

Anita Long is a registered nurse with Hospice of Community Nurse Association of Fairhaven. She cared for Grace Frasier during her 14 months in hospice. Two weeks ago, she sat down to share her experience during those months. The memories brought laughter and, towards the end, tears. The following are her own words:

As told to Gretchen Farenbacher, Standard-Times staff writer

When I first met Grace, she was pretty up-front about everything. She said, "You know, I have been hit with a double whammy now." She used to say, "It is bad enough I have this MS, which I knew eventually would take my life, but now I have been hit with cancer, too."
She seemed, at the beginning, to be dealing with that pretty well. She seemed pretty accepting of it. She said, "You know what, I want to be comfortable, I want to be home with my husband, when my time comes. I want God to take me." She made it clear that her faith was very strong right from the beginning and that was going to help pull her through.
As we moved along with Grace, her faith kind of wavered sometimes. I think it is very challenging for people to be confronted with their own death, knowing that it is coming at some point soon and to try to deal with that. Some days where you can be pretty at peace with it and other days we found Grace to be very frightened and it was up and down for her right along over the next year. But she and Stanley agreed, at the beginning, that she would stay at home, she wanted to be comfortable, those were the goals.

When I presented hospice to Grace's family it sounded like services that would meet their needs. She had had home health services from our agency already for quite some time, actually a daytime home health aide that she had in there, had already known her for about five years, her name was Ann (Fotheringham). They were familiar with home health care anyway, but hospice was a lot different because the goal at that point is not curative -- the goal is strictly comfort and it meant some shifts, particularly in Stanley's way of thinking, sometimes in Grace's, too, during those first several weeks, even the first couple or few months.

There were times when Grace would feel some changes or she would be having some trouble with pain and things and she would get nervous about it and wonder if she should be going in for X-rays and tests, should she be going into the doctor and have that evaluated. I would explain to her and her doctor would explain to her too that the thinking is, when you are trying to keep somebody comfortable, when you are giving them palliative care, that you don't necessary go in poking and prodding, doing a whole lot of diagnosis types of tests, because you have to consider what you are going to do with the results.
Sure, you can go in and do X-rays and you can go in and poke around in those lungs again, but you already know that there is cancer in there, that it is not treatable, that you can't do surgery or chemo or anything like that on it, so what are you going to do with those tests? And her doctor presented it kind of well to her. He said, "Why go looking for trouble?" And that kind of clicked for them, the family, and Grace seemed to understand that. That phrase kind of came up several times, I remember, early on in her case.

Eating began to be a real big deal and I learned early on that would be a sensitive issue for Grace. I tried very hard to teach her to be patient and teach their family what they were going to expect.

I remember getting her positioned that morning (that she died) (pause, voice faltering). She did have pain, moving back and forth ... She was so weak that she could not even control where she put her head. I think the home health aide was there, too. They got her all settled. Grace still had a look on her face that she was not comfortable, so I stayed with her for a little while. I just fiddled with different, getting her in position so she could feel comfortable, and eventually got her head settled on the pillow, so that she looked comfortable to me, and she smiled at me at that point, (voice faltering) and it was just kind of a thank-you, I think.

That was basically the last time I saw her while she was still alive. That was in the morning and her breathing was very irregular at that point and I knew that it was probably a matter of hours until she died. I made Stanley aware of that. It would be sometime today or possibly into the evening. I did my teaching with him as what to do for her, not to move her around too much, keep her comfortable ... I said good-bye to her, I knew for the last time ... and four or five hours later my beeper went off. Sure enough, she had just died.
In a way it was good, I was glad I was the nurse that was still on. It was a way to complete things for us. Sometimes it is hard, when you work for a patient for a long time, too, not to be there when they die. It's bound to happen sometimes and we deal with it. You find different ways of closure. Depends on your relationship with the patient ...

I think we did a pretty good job taking care of Grace. She did her share of emotionally suffering. I try to find that time to say good bye, I try not to miss it. I let these people know what they meant to me ... Grace and I said good bye a few weeks before she died. She got into a conversation about what hospice does and how hospice takes care of dying people and she told me to keep doing what I am doing (pauses, voice faltering) which was flattering to me, it felt like I was doing something good. I remember telling her that she was a real good learning experience for me (laughing)... I made it clear to her that I learned a lot and there were some hard times, I didn't lie to her ...

I gave Stanley a hug and a kiss and he said thank you. When the funeral home got there, he walked out with her, too, he made sure he was still taking care of her at that point basically. Walked right down to the hearse with them.

An interview with Grace and Stanley in the spring of 1996.

Photographer Jack Iddon speaks of his experience.

and

The photographic journey.....

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