On my way home from work this evening, a white tailed deer ran across the road. Luckily, we didn’t collide. This beauty was just close enough for me to notice her in the dusk. According to “Animal Spirit Guides” by Steven D. Farmer, white tailed deer are about the rocky path behind you. “You’re entering into a time of plenty, but the path to get there has not been without sacrifices.” 

One year ago today, I had completed one week of orientation as a hospice nurse case manager at my new job. It has been a year of being cracked open, whipped around and cracked open some more. I have dived deep into my emotional self and learned that I am not crazy. I have been introduced to the notion that we are all entitled to our feelings no matter what they are and even if we can not identify them. I have taught some of my patients about that. What delicious relief when it sinks in.  

I have been pushed to be my best and have appreciated that in hindsight. When I took the job, I told my old friends that I was going to have to “step up my game.” I am grateful that I had the right kind of guidance to learn to meet those challenges. I won an award last month for showing extraordinary compassion to my patients and coworkers. It felt good to be recognized by people who do such amazing work themselves.

Last summer, I couldn’t wait until I understood more of the layers of hospice nursing. Learning about eligibility and what is covered by whom is a tangled mess for the new hospice nurse. Which medications are on our formulary and what does that have to do with coverage and relationship to primary diagnosis? The RN case manager has a major role in identifying eligibility and coverage.  

I even envied my mentors for simple things like knowing everyone in the agency by name and how to buzz up the back stairs in our affiliate hospital without reading all the signs. (I can almost always find my patient rooms on the first try now for the GIP hospice patients.)

I will soon get an opportunity to mentor a likeness of my former self. Our agency has hired a new nurse and I remember perfectly the things that were helpful to me. I can not wait to show her the strategies I have learned and been given along the way this year. Some are for patient care and many for self care. I remember exactly the points at which I was grateful that I stuck with it and the places I learned to rely on the team. Then and now, there are many, many times that I recognize the immense privilege of being part of a hospice team that works at our level and provides an experience to patients and families that preserves comfort and dignity at the end of this life.    

The deer also means that I am “…poised for an enticing adventure, one that will take you down many different paths and lead to many important insights.”

It’s been that already, of course, and it’s only been one year. This is an adventure that is new again and again. The many different paths are those to each patient’s home or that of his or her trajectory as well as my own winding path through the continuum of understanding.  

I wish I had recognized the message when I received it. I would have asked more questions or sat in silence instead of just knee jerk talking, like I do when I don’t know what else to do. It was a simple, powerful message but when it hit me later, I had to pull over on the side of the bumpy dirt road amongst the lupines, and breathe for awhile.

I rarely wear yellow gold, but the earrings were special. They are large, gold hoops inside hoops with a fresh water pearl in the middle. They were given to me by a retired physician who lived to be 97 because she never took anyone else’s advice, but relied on her intuition. I put them on that morning and looked in the mirror. They looked good, actually. She had said that there were no obligations except to wear them in good health. I thought about how special she had been and that if I wore them, something special could happen. Then, I put it out of my head to make room for the hundreds of details that had to be sorted out before the weekend. Did all of my patients really have enough medication to make it through? Did I need prescriptions for any controlled drugs before the doctor’s offices closed? Would FedEx get supplies delivered on Saturday even though it wasn’t guaranteed? There were emails from family members to answer, paperwork to finish up and the list felt like it went on for miles.

My first patient was Fredda. She is actively dying and I had been visiting every day since she became minimally responsive and bedbound. She’s too weak to move herself in bed now, so her caregivers turn her every two or three hours if she can tolerate it. I hadn’t talked with her at all over the last few visits because she was either unresponsive or asleep and I wasn’t going to wake her for my convenience. Checking her vital signs or looking at her swollen legs were irrelevant now. I saw that she looked comfortable and talked with her family and caregivers for the majority of the last few visits . She was so close to the end. Her sister said yesterday that she has had periods of time when she is awake and tells everyone that she is having fun. She is happy and emotionally in a great place. As recently as two days ago, she asked people to stand her up in kind of a dance where she gets a hug and a change of perspective. After a few minutes, she tells her sister that she should be in bed for Heaven’t sake and Jillian helps her back to bed.

My car wound around past the apple orchard on the bumpy dirt road that led to Fredda’s. I was admiring the expansive mountain view looking East into Massachusetts when a tractor pulling another piece of farm equipment chugged onto the road in front of me. I hardly minded doing 4.5 miles per hour because it gave me more time to look over the tops of the tiny new apple trees and out into the valley. Near the turn, a field of lupines shimmered purple in the soft, warm sunshine. The tractor turned off.  Left up another hill and right onto Twist Hill where Fredda lived in her art studio apartment. She had a lovely little farmhouse too but the more modern structure in the backyard with its big glass view of the woods was where she intended to die and where she had spent most of her time over the last 3 months as her conditioned changed.

“Knock, knock. It’s Brenda. ” I said as I always did when I slid open the screen door and kicked off my shoes. We aren’t supposed to take off our shoes in patient’s homes but it means so much to Fredda that I always have. I  keep new socks in my car in case I find myself wearing bare feet under my shoes on a hot day. It’s quiet and Jillian is there, along with two of Fredda’s friends. One of them, Carly, is a nurse and has been so helpful to Fredda. Carly tells me that Fredda has been saying things that don’t make sense about children needing to see her and how cute someone was when she was little. Another friend, Kathleen, is sitting in the chair at the side of the bed and gets up when I come in. I smile at her and sit down so that I am facing my patient. “Hi Fred.” I say, leaning close to her. “It’s Brenda.”

Fredda doesn’t always know us all anymore. “Brenda.” Her tiny voice says. “She moves her head to look my way but she doesn’t see me. It’s as if she is looking at something beyond me. People often do this in their last days. They also talk to and about people who have passed before them. I’ve seen it so often that I know it’s universal. Fredda’s daughter Marlene has told me that Fredda recently described Carly’s husband perfectly, though she never met him when he was alive. “A lot of people love you.” She told me.

“I can see that a lot of people love you too.” I said back although I should have either kept quiet or thanked her. I touched her thin warm arm with my hand, getting as much of my palm on her skin as I could, intending to give her some Reiki. After about 30 seconds she inhaled deeply and sighed.

“Thank you for that.” She said.  “Every time you come in here, there are..” she paused and tried to wrestle her hands out from under the blankets. “There are….” she finally got them free and held them up so her palms faced me. “There are two big orbs next to your head. They’re beautiful.” This time, I did thank her. It was wonderful to hear that. There are people who can see  energy and at the end of life, the veil between worlds is so thin. She had been back and forth across it for days. I kissed her on the forehead.

“Safe travels, my dear.” I said. I say this to many of my patients at this part of their journey. When they are mostly not here and very near the finale. I’ve never had anyone be awake enough to respond before.

“Thank you, my dear.” She said.

I doubt I will see Fredda on Earth again. She is ready to go. It feels good to know that Hospice has helped her reach her goals of being alert as long as possible and comfortable. I hope that if we meet again, I  get to know her better. When she is gone, she will understand why I wasn’t able to hear my message when she gave it to me. I am so grateful that, in the field of lupines, it suddenly came in loud and clear. ‘A lot of people love you.’  I will be listening more carefully from here on.

Forgive me blog, for I have sinned. its been nearly a month since my last post.  That coincides perfectly with the amount of time our agency has been understaffed.  Though all of us want to freeze admissions to catch up, no one wants to deny someone who desires end of life care.  Illness and vacations have drained us of staff at a time when our census is at a record high. The perfectionist in me who cherishes perfect customer service has gotten irritable and defensive when things fall through the cracks because  of it.  I don’t want to “bump” a routine visit for someone new when our census is like this. I feel that we should continue to take excellent care of the patients we have now at our usual top tier level of service. On the other hand, I want to help everyone.

Increasing revenue is necessary, of course.  Of equal importance is preserving our reputation and staying in regulatory compliance, but we will do both of those things because that’s what nurses do.  We keep up. We will see all of the patients we need to and we will be engaged and present with each one.  The stuff that does drop off our plates will likely go unnoticed by them and their families because it will be things like the finishing touches on our documentation, our rest, our hobbies and our family time. And, obviously, our blogging time.  It is not forever but it does make an emotional withdrawal from the bank of the spirit each time we are unable to do all that we want to for each of our patients. Our team and managers hope we don’t lose anyone.  We talk about that with each other. We say things and pretend we are joking, like “you’re not going to tear your hair out and quit or anything right?  Are you okay?”  That is code for “please be okay and don’t ever leave.” This is a wonderful job.  It’s hard and most of us love it.  I am new-ish but everyone else has been on the team for years. More than a few as many as twenty.  What each member needs, really, is a day off to catch up, and a day off to rest.  Then, our team would be back and running in top form. (Maybe when it slows down a bit.) Thankfully, we are all still sticking together the way we agreed to.  We have the support of an excellent manager, our medical director and each other and we will get through this, hopefully, the way an actor notices he’s flubbed a line but the audience doesn’t.  The work of the hospice team, is, after all, a performing art.

Updates on Ingrid and Fredda:  Ingrid has decided to revoke hospice and pursue treatment and we are rooting for her.  She went into the hospital for a surgical consult for her wound and we do not know where she went from there.  I hope to cross paths with her again some day and I hope she gets to see Joe Bonemassa live in concert.

Fredda is having ups and downs.  I visit her more frequently now because she is weaker and a little scared.  She feels secure with even 15 minutes of emotional support in person.  That’s an easy way to make someone more comfortable. Her symptoms of pain and vomiting are under control and her family has come together to care for her.  She says she is in a good place emotionally if not so much physically as she puts it.