Continued...

Q: I understand what you're saying about death being a positive journey, but then I look at someone like Alvarene, and to be honest, I don't see this as a positive journey for her.

Marjorie: I have to agree with you. You take someone such as Alvarene, and God bless her, she's doing a wonderful job. I try to put myself in her position and I think, "What would I do? How would I feel?" I don't know how I would feel but I have one gift to give to her at this point in time - as any of us do - and that is the gift of our very presence, of being there with her, of trying to be there on a level where we can communicate with her. Alvarene knows and understands exactly what we're saying. She needs to be with us and I think that our job is to constantly reinforce the fact that she's a healthy vibrant spirit within. Her little body, it's not healthy. It's so hard for her and I can't in my fondest dreams realize or understand the courage that it would take to be able to experience this sort of life. But you know something? Alvarene's doing it. And she laughs with you. She'll smile with you. She'll want you to be present with her. Believe me, even though we are not getting a response, we always love, we always hold and do whatever we can do to bring comfort to our patients.

Al and I have a lot of conversations. I think he's done a wonderful job of caregiving. He will express the fact that he's just not sure what his feelings are. He's done this for so long. Alvarene needs to be able to express what she's feeling. She's not going to respond to her husband in the same way that a wife would but she wants to and she needs to.

Q: It seems like there's so much stress on him. I know you don't want to talk about Al specifically, but in general, what kind of stresses do caregivers face?

Marjorie: The routine of caring for an ill person is very, very difficult. The short term caring for a very ill person is very difficult for the caregiver. In Al's case it's been a very long period of time. Al feels as though he has a strong feeling of responsibility to Alvarene. Al and I have talked about this - the responsibility of caring for his wife, and when do we reach a point where sometimes decisions are made that may hurt us more? Al will not ever say that he's getting to a point where he cannot care for Alvarene. But I'm just not sure in this situation and I have to be really honest. When do we get to a point where we say, "I can't do this anymore? It's getting to be far beyond what my capabilities are, not in the caregiving but emotionally and and mentally. How much longer can I do this?" I don't think Al's at that point.
The next visit I make with Alvarene, I have every intention of saying, "Alvarene, what do you want? What do you feel is best for you? Do you want to be here in your home?" I'm sure Alvarene does, but there's a lot of communication that I haven't had with this family. So that makes it really difficult for me.

Q: Is it pretty common for people to be faced with depression?

Marjorie: Yes, definitely with caregiving. Caregivers have to be very wise, and have to know themselves and how to keep themselves very healthy. Caregivers are in their homes - they're alone often. They're isolated. They're caring for a husband, they're caring for a wife, they have very little communication with the outside world. The only people they see are the caregivers that are coming in to help them caregive. Well, this might be two to three times a week. What about the other twenty-three hours a day?

There are so many different options once a person gets to a point where they feel like this is just beyond me. For example, if a patient has become violent, which is what happened in my own case with my father. We loved that man more than anything in the world. My father had Alzheimer's. We kept him home until even the caregivers refused to come in and help with my dad because he became so violent. I knew at that point in time I had to tell my mom she had done the best she could, and I've done the best I can. My father had to be placed in a nursing facility. That gave us time again. I could be a better daughter. My mother could be more loving because she wasn't so tired. She wasn't so upset because my father wasn't eating. He was able to get the care that he needed, and she could be at her very best when she was with him, which was a great deal of the time. But it allowed us the freedom of knowing my dad was okay.

Caregiving is fine until we reach a point of the day-to-day stresses to where we say, "Hey, I can't do this anymore. I need help." So we start looking for the resources. Hospice plays a big role in that. Hospice's focus is for the patient to stay at home. We bring in the very best skills and teamwork that we can to facilitate this, to help the caregiver. It's our responsibility to train these families to help educate these families. We're all going to walk this path and our main focus is to make this as easy as we can for these families. We can't take the pain away, the emotional pain. We can't make it all better, but we can give the comfort and the love to support them through this process.

Q: Earlier we were talking about the effect on hospice workers themselves, of having to express grief, having to deal with grief. You were telling me how your mother was sort of that wake up call for you. Tell me that story again of how you became aware of your own grief through your mom's death.

Marjorie: Well, after my father died, my mom lived with my husband and I for about six or eight months before she died. When my father died, my mother gave up. I could see what was happening so we brought her here to be with us. It was a steady decline for my mom. Intellectually, I knew what was happening but emotionally I didn't want it to be true. I came home from work and went into my mom's room and I could see that she was very close to death. The nurse had left, and I was there by myself and my main purpose was to keep her safe, to keep her alive, to keep her here with me. These are experiences that I know that all of our families go through in this dying process. I stood there watching this process go on with my mom and I could hear this voice within me, this screaming voice crying and screaming, and crying and screaming. It was as though I was watching what was happening, hearing this voice but I wasn't aware it was me that was screaming. It was not only the grief that I was feeling for the loss of my mother, it was the grief that I was feeling for every single death I experienced. It brought me right back to every single death that I had experienced in my nearly thirteen years of hospice. I didn't take the time to process and experience each and every wonderful friend that had died within my care. It was a unique experience.

It was valuable to me to realize that, as a hospice worker, I need to take the time to experience and process each and every single person that comes into myr life, not only in death but in life. So many people walk into our lives and it's a, "Hello, how are you? Nice to meet you." Wouldn't it be wonderful if we could just take that time with each unique person to experience what they have to bring to us. The gifts that they bring to us by just their very being. That's the way I somewhat look at hospice. When I have the privilege of meeting the families and the patients, the gift that they are bringing to us to be able to proceed on with their hospice care is so wonderful.

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