At our agency, one of the things orientees do is make co-visits with other team members. Sometimes it’s another nurse but it could also be a home visit with a social worker or with the director of volunteers, or whomever else. It’s a great way to continue to fortify our team and see what others do during visits.

I made two co-visits during my fourth week of orientation. One was with Jake, our chaplain, and the other, with my primary preceptor Julia.

Jake was making a visit to the home of Diane Czlusniak. She was a 52 year old with a brain tumor who was now unresponsive. She had fallen into unconsciousness two weeks prior. Even though she had had no food or fluids for 13 days, she was young, and her organs were still strong. She had so much edema, (swelling), that the extra fluid helped her hang on to life much longer than most people could have. She was comfortable and her family was near her every day. Jake was to visit with Diane’s husband, Rick, to offer support.

Rick sat with Jake on the sofa and talked softly. I went to Diane’s bedside where her sister was also standing and holding Diane’s hand. This is where I am comfortable. At the bedside. That is familiar territory and although Hospice is new to me, I answered some of Lisa’s questions and offered emotional support. When it was time to go, Jake and I said our goodbyes to the family and Rick politely escorted us to the door.

“Let’s meet at the library and talk a bit about the visit.” Jake said.

We met at the local library where Jake told me that this is how the hospice team is. We are squatters and interlopers at any place that works for the time. It might be the library or the local coffee shop. Jake has a soft, comforting presence that opens people up and when he began to talk with me about my background and spiritual orientation, I began to tear up. I don’t know why. I didn’t feel sad. I wasn’t raised by religious fanatics and didn’t have any spiritual discomfort that I had known of. He continued to say that my preferences fit in perfectly in our area. The city we worked in was full of people who weren’t exactly religious but very spiritual. It is an artsy, intelligent vibe and I still love it. I do feel like I fit in. Then, however, it was all very new. I continued to cry and he continued the conversation. Jake is so used to this, it didn’t even cause a blip on his screen. We didn’t discuss my reaction.  We stepped into the sunshine and as we parted ways in the parking lot, Jake just said, “See you tomorrow.”

I have always been embarrassed to cry in front of others. Who knows why. I think I came into this world with some discomfort around that because it has been a lifelong worry. I sometimes try to overcompensate by being ultra cheerful when I am teary, as if I can fool others into thinking I am not actually crying. If anyone else has this issue, I recommend working in Hospice. You will not get away with this for long and eventually be cured.

One thing Jake said that I did hear while I was trying to fake not being teary, was this: If you work in hospice, you must have some type of life giving activity or hobby that you pursue outside of work or, before you know it, the grey fog will roll in. He went on to say that sometimes the grey fog gets in and takes hold before you are aware of it and then, its harder to shake it. I took this advice to heart and took up with some colorful paints. It has saved me and taken over our barn.

My visit with Julia was to a local nursing home where we have a lot of patients. We were seeing Carol Danville, a 95 year old with Alzheimers. Alzheimers for a lot of families is the longest goodbye. The patient doesn’t always recognize their loved ones and can be in this state for many, many months, or even years. Carol’s daughter, Janet, was at her bedside as was Janet’s partner Kim. The two had been watching Carol’s decline for nearly 2 years. Both had come to terms with their impending loss and were coping appropriately.

As Julia spoke to the women, providing emotional support and end of life teaching, I could feel hot tears prickling my eyes.’ I can get through this ‘I thought.  ‘A few more minutes and we can go out to the desk. Just hang in there. ‘ It was no use. I bit my lower lip. I dug a thumbnail into my chin. Neither worked. The tears began to flow and though I didn’t think I felt sad, they came and came and I had no control of my emotions. I left the room, because I felt my reaction was inappropriate from a customer service standpoint. Was I actually cut out to be a hospice nurse? Was it even good for me?

I slipped out and found the ladies room. I looked in the mirror. There was no going back. My face looked like I had been sprayed by a skunk. Finally, I gave up trying to wet my face and pull myself together and went to the desk where I found Julia.

“I do not know what to do” I told her.

Julia knew what to do. “Just be with it.” she said. “Just find a comfortable seat and let it happen.”

I sat in an armchair near the elevator, pretending to look at my phone. One of the floor nurses, Marcia, came to the elevator on her way to lunch. “It’s so great that you can feel to that extent,” she said with a gentle smile. “Not everyone can.”

I love her to this day.

Julia came to sit next to me and said, “You are an empath. It’s okay and that’s what is going to make you an excellent hospice nurse. It will get easier to manage. ”

I could not understand where those tears came from. After I talked with Julia, and was mostly cried out, things seemed okay. The day was over and I could go home. After a good night’s sleep, it would be okay tomorrow. That was only because I didn’t yet know about support group.

Medicare mandates that hospice personnel attend monthly support groups. Many hospices do not take this as seriously as ours. We are paid and required to attend. Our agency pays a professional facilitator to run it. Our monthly meeting was two days after my nursing home experience. Julia had advised me that it was informal and you could talk about anything or nothing at all. Nothing ever left the room.

By the morning of support group, I was feeling okay. I would just listen and see what people said. We sat in a circle in comfortable chairs or on the sofa. It was informal, just like Julia said. The nurses were all there, our team assistant was there. It was fine. Until our facilitator, Carla, signaled the beginning of the meeting. I began to cry. Right then. It wasn’t even my turn to talk. I cried for the duration of the meeting. My attempts at controlling it were useless. I later told our director that I would have sooner had a seizure and peed myself, I was so embarrassed.

None of my peers were remotely disturbed by this. They have all been hospice nurses for years and everything anyone feels is okay. When it was my turn to talk, I defaulted to finding humor in the situation. I said I would now demonstrate how I felt, even using sweeping hand gestures like Vanna White. I was unbelievably uncomfortable and barely remember what I said but everyone just listened and offered me tissues, something we always have a good supply of at support group.

I vowed that when I went on evenings, I would never attend support group again. We have a union. They can not make me attend because it isn’t on my shift and that was my out. That lasted only one month. My boss, Marianne, a brilliant, well educated and experienced nurse, asked me how things were going.

“Great.” I said with a bright smile. “The team is really helpful. I feel like I am starting to understand more about how things work. There is always someone to answer my questions.” We were in a small conference room reviewing my progress and our manager Elle, and Julia were also present.

“And how is the emotional stuff?” Marianne asked.

No amount of chocolate ice cream or mental preparation for this had helped. I started to cry.

“I don’t feel sad.” I began. “I don’t know where this is coming from. I feel like it’s the transition to hospice. It doesn’t affect my life otherwise.”

“And it doesn’t affect your work.” Julia added.

Thank God. I didn’t want anyone to think that I wasn’t hospice material after all. I had been interviewed four times before being hired and we were now weeks into my orientation. I told Marianne that I would be fine and just didn’t want to come to support group any longer.

Since Marianne was so savvy about what makes a good hospice team, she advised me not to retreat ( which is my favorite tactic) but to instead lean on the team and attend support group. She further added that it would be easy to move the support group to a time that was during my shift.

I didn’t attend the following month. I couldn’t do it. I was excused but Marianne arranged for me to have a session with Carla outside of support group. I found out that everyone on our team has had private sessions with Carla.  I asked for some strategies for controlling my emotions. I wanted some tools to release them only when I saw fit. I am sure Carla was chuckling inside because what she advised was to let the tears happen, no matter how intense, and they would eventually subside. She also advised journaling and echoed Marianne’s advice to rely on the team. The month that I missed support group, I got calls from several team members. They wanted me there. I was part of the team and we all needed to be there. When I returned, one of the other nurses quietly said, “good to have you here.” You can’t beat that kind of support. Now, I enjoy support group. We all cry and laugh and lean on each other. That is how it’s supposed to be. I don’t have episodes of uncontrolled crying anymore. I have learned that letting it out when it’s there is the way to go. It keeps the grey fog at arms length and makes us more available for giving and joy.

Caroline Patrel was 97 years old when I met her and mostly non responsive. Her terminal diagnosis was Dementia and I wish I had known her even one month before when she could still speak and tolerate being out of bed. Even for people with advanced dementia, there is a window into their world and their lives from the things they say and do. From the descriptions by her caregivers, she lived her life doing her own thing and I admire people like that. It was August and only one year prior, she had been out mowing the lawn wearing her “daisy dukes.”

Since Caroline’s only son, David, lived out of town and worked all day, there were hired personal care attendants in the home 24 hours a day. They were loving and wanted to do what was right for Caroline but none had cared for people at the end of life before. One, in particular, Rosie, was focused on and prided herself on being able to “get some food into her,” even when Caroline was too sleepy and unable to swallow. We all want to feed those dependent upon our care, but at end of life, places a real burden on the human body, which does not feel hunger at this stage of life. The loss of appetite is the body’s natural wisdom.

For most people, food is care and love and it is ultra important to feed those in our charge. Otherwise, we feel that we are starving them. This is the hardest thing for families and caregivers at the end of life when the body begins to shut down and feeding is the last thing it needs. I spent much time talking to the caregivers about this. I offered them other things they could do for Caroline that provided her comfort, like holding her hand and playing the kind of music she liked on an ipod dock next to her bed. On warm days, they opened the window, so she could feel the sunshine and smell the gardens that she had so loved in her life.

The caregivers and Caroline’s son were receptive to teaching and within a few days, were confident and skilled with turning Caroline, making her comfortable and recognizing when she was uncomfortable. They knew to watch for any wrinkling of her brow or tensing of her body. As her breathing became noisy and rattling, they administered two drops of Atropine solution under her tongue to relieve it. They knew that it didn’t really bother Caroline (and there is evidence that it doesn’t bother any of the patients who do this) but it is disturbing to listen to because it sounds like the patient is drowning. We knew it wouldn’t be long. It is nearly impossible to predict when someone will die, but the one statistic we have, which means nothing to an individual, is that once the rattling breathing begins, the average last breath is about 16 hours later. I made my final visit to Caroline and her caregivers on a hot, bright, Friday afternoon. I resisted the urge over the weekend to check my computer to see if she was still in the census. Our manager and my mentor, Vanessa, advised against doing things like that in order to keep our own time our own and minimize burnout.

I was surprised to find, when I was first learning about hospice nursing, that it was hard to sleep. I had never had trouble sleeping and once slept through the house next door burning to the ground in the night even though fire trucks from every surrounding town screamed to the scene. (Everyone got out safely.) Now I couldn’t shut my brain down easily or unwind. I would lie in bed thinking about my patients and their supplies of medication and dressing supplies. Were they comfortable and did their families remember that we wrote down instructions for managing restlessness overnight? If I did sleep, I had vivid dreams that I remembered in great detail in the morning and thought about long into the day. Finally asleep in the small hours of Monday morning, I was jolted awake by a micro instant of twittering by my left ear. (As I write this, I can feel the sensation again.) I could feel the sound at least as much as hear it. I initially threw the covers over my head, thinking there was a bat in the house. It wasn’t until later that afternoon that I realized that it had been Caroline’s spirit swinging by on the way to her next adventure.

I am a hospice nurse.  The posts that follow are events and experiences from my first year as a hospice case manager.  Though I’ve been a registered nurse since 1987, hospice nursing is unlike any other experience.  Most people who haven’t had personal experience with hospice care, don’t know what it is really about.  It turns out it’s more about life than death.