Friday, July 10, 2009

Hospice volunteer

Nancy of Life in the Second Half has written a very provocative post about "Death with Dignity" and assessing Hospice and our system of dying and wondering how it might be improved. It reminded me of the two years I was a Hospice volunteer.

My infant son died in 1965 of spinal meningitis at the age of 13 months. I was so incredibly scarred by this event that for a decade I could not be in the same room with a small child. And then, one day, I noticed that I was enjoying looking at the sweet smile of a baby, without any pain. Somehow, I had healed from that terrible wound.

In the mid-1980s, I decided to go through the training in Boulder to become a Hospice volunteer. Since I already knew some people who were acting as volunteers, I knew that I would have to deal with that loss, and try to come to grips with any residual feelings in order to complete the healing. And you know, that is exactly what happened.

My first patient, Carl, a man in his sixties, had an inoperable brain tumor. They tell you all this before you agree to volunteer. His wife, Doris, needed someone to come and sit with Carl while she went grocery shopping and took care of herself. He was not expected to live more than three months. Once a week, I spent a few hours in the middle of the day (I was working part-time on a regular schedule) with them. I grew to love them both, and I kept a journal back then. Here is a significant passage:
(2/15/84) Dear Journal, I haven't yet told you about Carl, my first Hospice patient, and a dear, sweet, ego-less man. A beautiful thing happened last night: I allowed myself to care about both Carl and Doris, in a new way that helps me to deal with the situation. I crawled under the kitchen table to put Carl's slippers on -- we had forgotten them when we put him in his wheelchair -- and I put the slippers on his feet. I heard in my mind, very clearly, "Whatsoever you do unto the least of me, you do also to me." The image of Jesus came into my mind. When I got up from under the table, Carl said, "I felt just like Jesus." It astounded me. And earlier, when I first arrived and was checking on him, he looked at me and said, "You're a good girl." It was like someone else had spoken through him, to me.
I spent some very significant moments with Carl, but that moment was the most incredible thing. I watched him deteriorate over the months, and sometimes I would be shocked when I would walk into the room. I remember once saying, "Carl, how are you feeling?" (He looked terrible.) And he smiled mischievously at me and held his hands in front of him and said, "With my hands, of course."

Carl died at home on May 13, 1984, almost exactly at the three-month point we had been promised together. I learned a great deal from my volunteer experience, and I will never forget him.

But I could not continue for long. It takes its toll on the volunteers and the nurses. I met wonderful people in the program, the doctors, the nurses, the other volunteers, and the patients and their families. My last patient was a young woman with hepatic cancer. She didn't live long. But I couldn't take it any more and stopped volunteering. It's one thing when people have lived a full life, and quite another to confront your own fears when someone your age dies.

I have had much more loss over the years; we all learn to deal with it. Those two significant years prepared me for those losses in a way that I cannot adequately describe. I highly recommend it. The Boulder Hospice training gave me the tools I needed, and I still use them.


  1. You are really wonderful DJ. Carl was right - you're a good girl.

  2. That is a beautiful post. I have the greatest respect for everyone who works in the hospice program.

    In 1999 my MIL was diagnosed with ALS. It progressed rapidly and she went to live in assisted living for a short time.
    By the time she was placed in a hospice it was only a matter of a few days. I was the one who was with her on her last night. The couple who ran the hospice checked in on me every hour all night long making everything, meaning me, was ok. They were the most wonderful people I have ever met. It take a special kind of person to do this work in any form be it professional or volunteer. I think you are very special.


  3. This is indeed a beautiful post. I find that most staff and volunteers are better able to cope with significant tragedy and loss in their personal lives because of hospice service. After 6 years in the hospice field, I have learned to love the spiritual growth I witness in the midst of physical decline. At my age, I guess that would also include myself.

  4. Your post is very moving. I lost my dad when I was nine. My mother was dying at the same time. I wish I would have has someone like you to talk to then. No one thought about kids in those days.

    I can't even imagine losing a child like you did. You are an incredible woman with an amazing capacity to love.

    Thank you for sharing....

  5. So many people shun the dying, but they are missing out. To be able to give to someone at such a vulnerable point in their lives is priceless. Thank you for what you did.

  6. A true gift you gave, and received, my fried.

    My first year as a nurse I worked night shift on the oncology unit. One of the most profound experiences of my life. Especially since my mother died of cancer when I was 16. I worked through a lot of my own unresolved grief that year, and I hope I helped some people along the way...

  7. What a moving post, DJan. It shows that you are a person with exceptional sensitive feelings. When loved ones die, especially children, it is so very difficult.

  8. That was some experience DJan. It's amazing how these experiences pop up in our lives, making us better people. You will never forget the people you helped and who knows, you might meet them again on the other side. I don't know why you have had so much suffering in your life. It must be because God has singled you out as being very special.
    God Bless you this Sunday!
    Star x

  9. I just got goose bumps reading this. Wow! We are going through some terminal cases in our family right now and it is very difficult. Your words just inspired me to not be so selfish in my interaction with these dying loved ones. I am going to make a point to visit them all this week and be thankful that I'm well and able to go to them. Thank you.


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