Friday, January 5, 2018

Diary of a New Hospice Volunteer

by Lizzy Miles

I had forgotten that I had written about my first few days as a hospice volunteer. I just discovered it while I was looking through some old electronic files. Now, ten years later, with more education and a career in hospice, I still notice that some things never change. You would think that I would be more certain about things, but I don't think I am. However, I believe that uncertainty is a necessary part of the job. I've written about how we don't know death. When we are uncertain, that means we are evaluating our behavior and how it's perceived by others. I now believe it's good to be a little bit nervous because it means you care about how you come across.

When I became a volunteer manager, I remembered my uncertainties and wrote about how to address them in a FAQ for volunteers.

This diary is unedited. I display for you my vulnerability full-force. The only editing was of the identifying information.
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Day 1 of my hospice volunteer experience:  Monday, June 11, 2007

Before I went on the visit I ran through so many scenarios in my head. What would I say? What would we talk about?  I thought about it all day with a mixture of dread and anticipation. I am not ready for this. I need to do this.

When I got to the facility, there was a large open area where lots of patients were in a big circle playing bingo. I worried that my patient that I was to be visiting was there and what was I supposed to do. She wasn’t… she was in her room… room 205. The receptionist told me that Annie would like the company.

The door to Annie’s room was propped open with a trash can.  I knocked softly and walked in and at first I didn’t see her and thought she wasn’t there. Then I saw her. She was a tiny little thing laying in the bed with no covers. The television was on, blaring the evening news. Annie was sleeping. I wasn’t sure what I was supposed to do next. Would she wake up startled that a stranger was in her room?

I saw a footstool at the end of the bed and sat on it. Then I realized if she opened her eyes I would be right there staring at her and it might be uncomfortable for both of us. So I moved the footstool to the side of her bed. No that’s too close. I scooted it back so I was within her line of sight but more through peripheral vision. She was moving her hands and tugging on her air tube and mumbling stuff. I couldn’t hear her over the television.

Finally, she opened her eyes and looked at me. I said, “Hi Annie, I’m Elizabeth, a volunteer with hospice.” She then asked me, “Are you here for communion?”  I thought she was asking if I was here to get communion and I said no.

Then she said, “Are you here to give me communion?”

I said no, I was a volunteer. Then she told me that she needed communion. Several times. “I want Coly Communion.  I WANT Holy Communion.  I want to be absolved of my sins.” I was not sure what to do.

I asked, “Do you want me to see if I can find someone to give you communion?”

She said, “Do you think I can go out like this?  Of course not.  How am I going to get communion?”  She was quite distressed.

Thinking that somehow through a streak of bad luck I got a patient who was dying immediately and that I needed to go and find a priest right then, I told Annie I would go see what I could do.  She seemed relieved.

I walked out to the nurse’s station and I had to take a second to compose myself.  “Annie is asking for communion?”  The nurse smiled and nodded and said that Annie had communion that morning.
“And that’s good enough?  I don’t know… I’m not Catholic.”
“Yes – she probably just forgot.”
I went back into Annie’s room and told her.  “Annie!  You got communion this morning!”  She smiled.  “I did?  Oh thank God. I forgot. My memory is not so good.”

Annie’s daughter Karen came in about 15 minutes later and I introduced myself.  She was maybe in her late forties or mid fifties with curly brown hair.  She looked tired.  I wasn’t sure whether to stay or go, so I kind of backed up and leaned against the wall.

When Karen started talking to her mother, I saw an immediate change in Annie.  Her daughter was asking her how she felt and how much she ate and Annie point-blank said, “I don’t feel like talking. You can talk but don’t expect me to answer.” Karen looked at me. I saw the pain and the worry in her eyes.  I felt like I was intruding on a private moment so I said a quick goodbye and left.

As a volunteer we are not to judge or conclude. We are not to comment. You can’t help but think about the situation. The distance, without the pain and grieving, gave me perspective.  From my brief interaction with Annie and her daughter I concluded the daughter wasn’t ready. When I was there, Annie talked a lot. About the deeper things. She doesn’t have time for small talk. She doesn’t care about the food that she had. She just wanted to die and she was worried about it.  Karen, still talking about daily life is in a different place than her mother. She’s not ready for her mother to go. I hope that my presence in visiting Annie will help her talk about what she can’t say with her daughter. My fear is that I don’t know how to respond, but I don’t think that’s as important as allowing Annie to express herself.

Day 2: Wednesday June 13, 2007

Wow.  I just returned from my second visit with Annie.  It was quite a different experience. I should have known the days would be different but I forgot. This time the door was closed. Not sure what I should do, I asked the nurse who told me that I should knock, but that she wouldn’t hear it and then to go right in.

Well this time Annie was sitting on the bed fully clothed. She had her head down and didn’t notice me right away. When she did see me, I think I startled her and she scolded me several times.

She had forgotten who I was but seemed glad to see me. She asked if we could move over to the chair to visit. She said she forgets stuff often and mentioned it would be nice to have a notebook to write things down. I saw a notebook next to her chair and we got it out and it was FILLED was scrawled writing – rants almost. Then we saw another notebook and the top page had “Stop Talking on Paper” written on the top of it.

She asked my name and talked about privacy and how it was important not to use names and not to talk to people. She said I could talk about her if it helped other people but not to use names.

She asked for my first and last name and wrote it down. Then
she asked for the date and wrote that down. Then she asked whom I was with and I said I was a volunteer with hospice and she wrote that down. Then it started to get really weird.

She asked me if we had just met and I said yes and she asked me my name. Then she asked me the date. Then she asked me whom I was with and I said I was a volunteer with hospice. We continued the same conversation for an hour and a half. Every time I said my name she smiled and said it was her name too.

Interspersed in were a few stories that she repeated about being 19 in Cincinnati and having a friend whom she walked home with and somehow she was attacked and hit on the head.

About 8:00 Annie’s daughter Barbara called and I could hear how tired she was. Annie asked me to introduce myself and I did and Barbara thanked me for visiting her mother. She said it was hard to visit after work and I told her I knew. I had been there before.

Annie talked a lot about privacy and secrets. She mentioned her fear of being alone and she worried about people knowing that she didn’t have a memory. She told me that I didn’t have to worry about what I told her because she wouldn’t remember it anyways. Then she told me not to bother telling her anything because she wouldn’t remember it anyways.

When I said goodbye, she asked when I was coming back. I was undecided and afraid to commit.  I said Saturday once and Sunday once but I avoided writing anything on paper. She told me that she was really happy to have me come visit and wanted to give me something. I told her I didn’t need anything. She worried about me getting home and I reassured her that I would get home before dark. She asked if I would call. I told her I couldn’t.

I intended to stay half an hour, I ended up staying an hour and a half. When I got home I found that the Volunteer coordinator had sent me four more patients. I felt drained.  How can I possibly…?

Day 3: Monday June 18, 2007

I negotiated with the hospice volunteer coordinator to only take on one additional patient right now. Tonight was my first night visiting both patients. I had wanted to go on the weekend but I haven’t been feeling great lately and I was really tired for some reason.

I visited Annie first tonight. This time I made sure I knocked loudly. She smiled and invited me in as if she knew me. She knew I was a friendly face but when I asked her if she remembered me, she said no. She seemed mentally more alert but physically more declined. She had some kind of massage pad on her chair and a pad under her butt in case she didn’t make it to the bathroom. We prayed together some. She said we were going to pray for 15 minutes and I got a little nervous because I don’t have 15 minutes worth of prayers but it ended up only being like two minutes. We said the Lord’s prayer together and there were parts where I had to let her lead because I forgot what came next. It’s been a while… Mostly when we were supposed to be praying silently, I would repeat the same thought over and over in my head. Please lord, accept Annie into your kingdom. I thought at the end of the evening that it might be nice for me to look up some actual prayers as I felt that mine were somewhat inadequate.

Annie told me she loved me several times and I know that she was grateful for the company. I guess she has a reputation among the staff as being quite needy so I’m glad that I help in some way. It’s hard to leave her though, but I had promised to visit the other patient.
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Expecting the other patient to be just like Annie I was surprised to find out that she was in the ‘memory’ ward. You know, the one that requires a code to get in…  I walked in and there was a circle of patients, some sitting, some standing… listening to oldies. I’m not sure who was singing. I walked up to the nurses desk and stood there for several minutes and they finally acknowledged me and said that the nurses were getting Martha ready for bed and that I could wait with the circle. I waited about 10 minutes.

When I first met Martha I was pretty surprised. She was so very pale and fragile and you could barely distinguish her from the sheets. She looked at me but I could tell she couldn’t move her head well and I didn’t know whether to stand or sit and I ended up switching back and forth between standing and sitting. It never occurred to me to plan what to say and after I introduced myself I was at a loss for words. What do you say?

I ended up commenting on her quilt which commemorated a 50 year marriage as of 1999.  There were pictures of them young and older, but even the older picture didn’t look like the frail woman in front of me. It wasn’t long before Martha closed her eyes and went to sleep so I sat there about 20 minutes and tried to pray again and I am a little embarrassed to say, I watched the clock. I vowed to myself to look up some Catholic prayers so I would know what to say.

Whoever thought it would be so hard to talk to God?
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Annie ended up living for several years after her hospice admission. She was discharged and readmitted. She had a big influence on me deciding to switch careers and return to school to become a hospice social worker. I wrote about her in my book of hospice stories. I had to stop volunteering with her because it was a conflict of interest.

Fortunately, her daughter emailed me when Annie was dying and I sat with her. Shortly before Annie died, I wrote in her notebook, "God loves you Annie." She read it and looked up at me and said, "God loves you too, Elizabeth."  My jaw dropped. She said, "That IS your name, isn't it?" With tears in my eyes, I nodded yes. When Annie became unresponsive, I sat with her and put a cold compress on her forehead to cool her fever. I didn't have a rosary, so I used pieces of paper to count out my prayers. After several years with Annie, I had the rosary prayers down pat.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and a regular contributor to Pallimed. She is the author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

Photos via Unsplash



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