My assignment was to begin at the home of a cancer patient who has had difficult to control pain.  Francie went quickly from oral morphine  to a CADD pump that delivers morphine continuously. She can give an additional dose when needed by pushing a button. She needed it as often as the pump allowed and we had gone up and up on the dose which is okay with opiods. There is no ceiling on the dose and it’s whatever works for the patient, only nothing had worked for her for more than a few days at a time.  We started oral ketamine, an anesthetic which looked promising for a couple of days until Francie called the office with an urgent need for help. She couldn’t take the pain anymore. She lived alone and always responded well to companionship. Each time I or anyone else had visited, her pain decreased. Every member of the team had noted this. I assumed I would get there, we’d talk, review her medications and make sure she had remembered to take what she could and I would leave her more comfortable as always. Although I enjoyed visits with Francie, her house was dangerously dirty and cluttered. It smelled of old cigarette smoke and used cat litter. I usually scheduled her at the end of the day so that my clothes didn’t carry unpleasant odor to other patients. Cigarette butts were on the parts of the living room floor that were visible between clothing and trash. The thing that didn’t make any sense was that Francie was an intelligent, engaging woman. She was a skilled conversationalist. She knew about science and the arts and kept up with what was going on in the world. In the midst of this squalor stood a perfect cello and she played several instruments. Underneath ropes of cobwebs, paintings and photographs of her own creation hung on the walls. We didn’t know her whole history. Here was a bright, articulate, engaging woman living among piles of trash and dirt. I found Francie lying in her bed, half awake, maybe not even half, smoking a cigarette.
“Are you awake enough to be smoking?” I asked, leaning over to look at her face.
“Yes. I never smoke if I’m not awake enough.” She extinguished the cigarette.
Cigarette butts of all sizes covered her bed. Some were half under her body and a pile of ashes lay on her pillow. There were more ashes on the floor in the carpeting. Then I noticed burn holes in her shirt.

“Where is the pain, out of 10 today?”

“10.”

“Have you given yourself a bolus dose with the pump?”

Francie hit the button, delivering an extra dose of medication, while I tapped out a text to our medical director. PLEASE CALL ASAP. INTRACTABLE PAIN.
Dr. G called right back and I reviewed what Francie had taken and at what time.

“Give another 20 mg of ketamine and call me back in half an hour.” he instructed.

Thirty minutes later, Francie reported in a whisper that her pain was 9.5. With another bolus dose of morphine, it was at 8. At the 45 minute mark, I texted Dr. G. PAIN HOLDING AT 8. OTHER SAFETY CONCERNS HERE. PLEASE CALL.

Dr. G. was tied up with an emergency. I tried our manager. She had stepped out.  I could not leave Francie alone.

“Can you get out of bed Francie?” I asked her.
“No.”
“When was the last time you got out of bed?”
“Yesterday.”

“And the pain now?”

“11.”

I texted Dr G. again. I hate to admit that, without being able to reach anyone, I was beginning to feel trapped and worried about Francie.  I couldn’t leave nor immediately make her more comfortable.  My eyes burned from the smoke and I felt queasy. COULD USE YOUR ASSISTANCE ASAP

I phoned our social worker and explained the situation.

“I can’t leave her here.” I said. “I called her friend to come stay with her until I hear back from Dr. G. but she can’t be here for 3 hours. She is baking bread.” The last word wavered and I felt tears begin to prickle at my eyes. It wasn’t just the smoke. I stood next to a window and slid it open.

“There isn’t much you can do about this right now.” Bonnie explained. “This is how she chooses to live. We’ve tried to get her to go into a facility before.”

“Yes. I know.” I hung up. I did know that people have the right to live however they choose if they are of sound mind, but still did not feel safe leaving her.

The phone rang. I explained to Dr. G about the pain and the cigarettes, the burn holes and that Francie hadn’t been out of bed since yesterday. We decided that the only compassionate thing to do was to admit her to the hospital for pain control and so that someone was with her.  I called our office to arrange transportation. Francie agreed to go and while we waited, I rounded up the things she wanted to bring.

“Will it help? ” she asked. “I can’t take this pain. Maybe I am supposed to suffer because I am a bad person,” she said softly.

I listened as she tried to reconcile parts of her life.
“I think we can get the pain under control in the hospital,” I told her. “There are doctors and nurses there to help you 24 hours a day. We can help you better there.” Hospice would be able to continue care for Francie in the hospital also.
“Will you feed the cat before we go?” she asked. “Leave the door unlocked because then my friend can feed them.”

I cracked open a can of Bandit’s food and he came running. I freshened his water and looked out the window over the kitchen sink as the ambulance pulled in.

We got Francie to the hospital and her pain under control. She is now mostly unresponsive, but for the first time, comfortable. She is sleeping in clean sheets and able to rest. Her forehead is smooth and her limbs are relaxed.  I often wondered if part of her intractable pain was the environment in which she lived all by herself. Maybe it’s the combination of medication and the ability to change things around the clock as needed that have helped Francie to be more comfortable. I think being around other people and feeling cared for have a lot to do with it too.

 

My phone rang. “Hey Brenda, it’s Eileen. We have someone over in the Emergency Room for an informational and maybe sign on. It sounds like she isn’t doing very well. She is in room 12.”

Nursing is always about re-prioritizing, no matter what your specialty is. I checked to be sure I had the information booklets I needed, made a legal u turn and headed for the hospital. When I pulled into the lot, I took a moment to open my computer and get an overview of the patient I was about to see. While the computer came on, I phoned the facility where I had been headed to make sure they knew I would be delayed. Gladys was 5 days away from her 94th birthday. She and her son were in one of the glass doored rooms with a curtain pulled around them. Gladys was unresponsive.

” Hello. I’m Brenda, one of the nurses from Hospice,” I began. “Are you Peter?”

“Yes.”

Peter looked bewildered but we talked a bit about hospice. His father had been on hospice service years earlier. Peter’s mother had been sick with respiratory difficulties for a long time but now, with pneumonia, it looked like the end was very near and Peter knew exactly what to do.

“I just want to take her home. That’s what she wanted. To be at home in her own bed.”

“We can help with that.”

I texted our team coordinator, Kristen, to “stand by.” I would need equipment fast. Gladys needed a specialty type of oxygen delivery system because she needed a high flow. I asked Kristen to please order a bed, an overbed table, and the high flow oxygen. The case manager in the ED already had prescription for morphine and lorazepam faxed to the local pharmacy. There was no time to wait for delivery from hospice pharmacy tomorrow. People with respiratory difficulties respond well to morphine and lorazepam. Morphine is a pain killer but also eases shortness of breath and lorazepam takes the edge off the scary feeling that you can’t breathe. Peter would send his nephew Bruce to pick up the medications and wait for the equipment company.

I went out to the desk to touch base with the case manager. “Has anyone seen Robin?” I asked amidst people buzzing by in every direction. Our hospital has one of the busiest EDs in the area and it often feels like it.

“Okay,” I told Robin. “The equipment is on its way. You should be able to book the ambulance for about 5 or 530 and I will go see her once she is home.”

“Great.” Robin said. “I will go call them now.”

Gladys arrived home at 600pm and I made a visit to her there. She remained non responsive but was comfortable and her face and body were relaxed. She was tucked into a hospital bed in her little room at the back of the house where she had raised three children, where her husband had left Earth years before. There were black and white photos of her children on the walls over her bed. They were graduating from high school, or posing in their Easter clothes as little kids. Gladys had a small framed wedding picture on the table by her bed. In the picture, she and her husband were no older than their youngest grandchildren.

I made sure that Peter understood how to administer medication if it were needed and how to turn her in bed. There were other family members in the home and all listened carefully as I showed them how to draw up the medications. They asked thoughtful questions and were prepared to do whatever was needed for Gladys for however long it took. When I was certain they had our phone numbers in view, and would be okay until we visited again tomorrow, I said goodbye.

As I stepped off Gladys’s front porch that evening, I couldn’t help notice that directly across the street was a bar. Outside the side door was a woman in flip flops and pajama pants smoking a cigarette. She was also having an animated discussion on her phone I thought it so ironic that behind me, the veil between this world and the next was growing so thin, while in front of me, it was as thick as a stone wall.

At 830 that same evening, Gladys passed away. I visited again to do the pronouncement. Peter had been in the other room at the time, though he had been by her side the entire day. Some people worry that their loved one is alone at the time of death, but some people need to be alone to die and won’t until they are. Peter was sad, but not distraught. His mom had gotten what she wanted. She had gotten home. EDs are wonderful places and many, many lives are saved there. When the end is inevitable, however, many people feel much more comfortable at home. Gladys got home just in time to die. Lots of people mobilized quickly to make it happen and it was a big win for her and for her family.

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.