My name is Fanny Pancake, RN, BSN. I am Hibiscus Hacienda's new recruit. After twenty years of working for an oral surgeon, I am ready to try something new. The six week certification course provided by Washington State has inspired me to become an angel amongst the living. Tomorrow starts my first day. My training course was great but I know that there is so much to learn.
What got me started on this journey was watching my own mom transition last year. The nurses were wonderful and I thought it was time I rolled up my sleeves and gave it a try.
Death is like a shift in place. The patient dies and never moves again, and yet there is a a shift. A place that the soul goes while we the living are left to observe the mystery.
Well today was my first day. I am job shadowing Roxane. She is the lead nurse and has been on the job for over 20 years. I have to confess I was nervous. My first experience, right off the bat was a death. Roger had died just an hour before I got to work. The family had been in there with him and saying their goodbyes. They were just leaving as I was filling out paper work for my W4 form. I was sitting in the small group dining area and trying to remain inconspicuous. Roxane took her time talking to the family, while I waited, I drew this potted plant that I tried to hide behind. For a minute there I just wanted to run to my car and drive home.
After they left, Roxane showed me that how to close all the doors to the other patient's rooms before rolling "Roger" out to the back where an un marked hearse was waiting. I guess they don't want to freak out the other patients. It is bad enough that they know their end is near without making a big show of it. As I rolled him out, I wondered what his life was like and if he would be remembered.
Most hospice patients are in their homes or in hospitals. Hospice is available to anyone who wants to focus on palliative care aka comfort care, instead of the full barrage of medical treatment. It doesn't mean you won't ever have antibiotics or an IV. It just means that the primary goal of all treatment is to keep you as comfortable as possible. A Cure no longer becomes the focus, quality of life does. This place functions as both a respite center to give the care givers a break as well as a place to go when the care become unmanageable.
There are ten beds in our respite center, with a nice quiet living room area to share with family, staff, and friends. We also have a dining room that always features freshly baked cookies and tea. Paradise hospice makes a point of being as homey as possible.
Jeff is a retired pilot. He is my first patient. Roxane, the lead nurse, only gave me one patient today (phew!). He is feeling better on the morphine I just gave him. He says hospice is like waiting at the gate, waiting for a plane to take him to the next big adventure. And yet, wondering if it will ever come, and more importantly if he would get to be the pilot! He is 69 years old and has pancreatic cancer. The "discomfort" (we are not allowed to use the word pain) is significant but his mind is still very much there. I think they gave him to me because he is so nice. Anyway, I have to run and help Maria in the next room with a patient.
Maria is in her bed, she has finally fallen back to sleep after changing her position. She was lying on her side for a couple of hours and so now she can lie flat with a pillow tucked under her knees. When patients sleep so soundly, they stop moving on their own, we do the moving for them. When she woke up during turning, her eyes shown as big as saucers. She really looked at me and I her. It was almost spooky. Now she is in a deep sleep. This frail being who is approaching coma, where did she go?
Lucas, our chaplain came in for a visit this afternoon. He makes his rounds every day and stops into chat if someone wants to talk. He introduced himself and we got to talking. He told me something interesting about most peoples most common concerns and regrets.
Lucas stopped long enough for a quick sketch. He has such a kind face.
One: They want to know if they will be remembered.
Two: They wish they spent more time with family and friends
Three: They want to know if they will I be forgiven.
Lucas stopped long enough for a quick sketch. He has such a kind face.
There is a lot of hand holding going on here. Hands are safe. Even when the rest of the body aches it doesn't normally hurt to hold hands. I sat with Mrs. Morton this morning. She doesn't have many visitors and so I thought I would sit with her for awhile.
Her hand is so limp in mine. But she did squeeze it and smiled weakly at me. I guess it doesn't matter what her life was like or what we might have had in common. What matters now is that we can connect in the most basic of ways. We connect with presence. And so at least for a few moments I was able to stop thinking about what to do next or if I was a good person..... or not a good person. For a few moments it didn't matter. To be honest, dying can be boring. Boring in between the hours of sleep and confusion. But holding hands and hearing a gentle voice can open the heart up and make it all worth it.
I leave you with a quote from Steven Levine. One of my favorite Death and Dying guru's
If prayer would do it
If reading esteemed thinkers would do it
I'd be halfway through the Patriarchs.
If discourse would do it.
I'd be sitting with His Holiness
every moment he was free.
If contemplation would do it
I'd have translated the Periodic Table
to hermit poems, converting
matter to spirit.
If even fighting would do it
I'd already be a black belt.
If anything other than love could do it
I've done it already
and left the hardest for last.
~ Stephen Levine ~
Mary Beth Pattison is in Room 5. Her husband died a few months ago. They had been married for 65 years. I saw this poem framed by her bedside. And then sat and sketched the reunion that awaits on the other side.
Your words were my razor
your touch was my drug.
Your looks were alcohol
your love was my blood.
Why did you leave me here all alone?
Your eyes kept me going when I had nothing to go for.
Your touch held me up when I began to fall.
I waltzed to your heart beat and danced to your breath
I slipped into silence as you slipped into death.
Wait for me on the other side
we'll only be apart for the night.
For when morning comes we'll dance in the light.
Written by Anna-Marie
So meet Elsa, she is the activity for the day. Which is kind of a funny thing to see at a hospice center. But it is the law to always have something recreational happening in institutions. At least they don't roll library cart up and down the floor!
I know she looks rather young to be in a place like this but she only comes one day a week. On most days she works in a preschool. Her mom works in accounting at our parent hospital and helped her to pick up the extra hours. Elsa says she had great grandparents and so learned to really love the elderly. Great news for us, as 90% of our people are over 80.
Today she sang "Blowing in the wind." And "If I had a hammer." Some of our patients sleep right through the serenade but every once in a while she gets a response that is heart warming for us all.
I remember those days of being 20 years old when I was first in nursing school. In my young mind the old people I took care of were ancient! Now that I am 50, they don't seem so old.
Here is a quick sketch of Bob at the farmer’s market today. Since I am not working weekends yet, I took advantage of our beautiful Northwest spring day to sketch amongst the happy healthy crowd. After orientation I will be working every other weekend and nights, so it's time to enjoy what I can.
Why paint Bob? He is just some old dude with a dog. Well Bob's wife and I are good friends, she and I have been walking buddies for years. We had a nice chat while he enjoyed the day. You see Bob, was diagnosed with Stage ll lung cancer a three years ago, he went ahead with the usual treatment plan of chemo and radiation. We all hoped for the best. He went through treatment, which I don't have to tell you was a challenge. But it bought him three more good years. Until two weeks ago when he started having problems with balance. A check up with his oncologist reveal what we all dreaded. A return of cancer with metastasis to the brain. This comes with a very poor prognosis. Bob and his wife decided to go the hospice route. He wants to enjoy the little time he has left out of doors, out of clinics and definitely out of hospitals. You wouldn’t know it, but he has been in bed for the past week. And will probably rest up most of the afternoon. But for now, he passes as one of the crowd.
I mention of this as a reminder to us “normies.” The next time you stroll down an open air market, know that there is no way we can ever know what is going on with the people we pass. So be kind, don’t judge and be grateful for every minute. And to quote my own mom, every kindness makes a difference.
I dreamt about my patients last night. Each alone in their own bubble splashing back into the cosmic ocean after a wild ride.
BTW, I find it really hard to draw out of my own imagination so I used this link for reference. www.posemaniacs.com
Janice Noruk's daughter in room 7 asks. How much longer does my mom have? Can you give me an idea?
ohhhhh, this is a tough question. And as a newbie, I really haven't the experience to answer. But Doctor Yang gave me this guideline.
As a general rule, when a person’s health declines from month to month, then they have months left. When their health declines from week to week, they have weeks left. When the changes are daily, then it is a matter of days. And of course even this road map has some bumps in it.
Janice is still eating. Only one bite meals. She still takes sips of water. And she has gotten worse since last week. I will let her daughter make the calculations.
Dr Chris Yang is our intern rotating here for the month of April. He really does smile like this all the time. He has the gift of gab and a sense of humor to go with it. Which really helps put the families at ease. And that is a good thing, because for obvious reasons this can be a stressful environment. For one, patients don't want to see their family so sad and worried. So anyone who can bring a light heart is welcome. Since the moods go up and down up and down in every heart the trick is to pick up cues when you step into the room. Sometimes conversation is quite simple and soothing and other times the listening ear is needed. And Dr Yang seems to know when to use his ears and when to use his humor.
He also share this great link with me. I learned a lot and hope you will too.
This afternoon, I got my first admit. Mr. Olmsted is a hospital transfer. And wow, the days of working in intensive care all came back. He is being admitted on oxygen, with an NG tube, an IV, a foley catheter and a heart monitor. This morning he was an ICU patient and now we are removing anything that doesn't help his TODAY.
But let me back up a bit, before he arrived, our team met at the hospital with the family and doctors to discuss the "bad news." And so we used the SPIKES protocol. Looking over my handbook for Hospice and Palliative Care, here is what it said. SPIKES- Setting, Perception, Information, Knowledge, Emotion, Strategy
And so this is what happened
S stands for Setting a meeting. Cell phones and pagers were turned off and drinks offered. Then we managed to chat a little to break the ice. (It is crucial to start with small talk. This is a way to pick up cues about each other. When launching into some serious stuff, starting simple is important.)
P stand for Perception: Dr Yang asked the family what they understood about the patient's health. (understanding their level of comprehension is a crucial. )
I stands for Invitation to give information: Dr Yang then asked the family what they would like to know, if details were important or if the big picture all the wanted. They were also encouraged to ask questions. (Too much information is as bad as too little information.)
K stands for Knowledge: Time to go over the facts: In this case the son wanted to know and understand everything. SO here it is
Your dad has a bowel obstruction due to adhesions from prior surgeries which have now developed into peritonitis. The poor circulation in the area was causing cell death which in turn was leading to a body wide infection. That combined with underlying poor health (diabetes, renal failure and congestive heart failure) he was not stable to endure the treatment. If his oxygen levels dropped any further, he would need a ventilator and that would only postpone his death.
E stands for explore Emotions and sympathize: The handbooks says to let the family absorb the information and identify their response ( sadness, silence, shock, etc.) To give the family time to respond, sympathize and connect. (We see this everyday, while this is their dad. )
For the Olmsted's they were quick to absorb the gravity of the situation. Dad had been chronically ill for awhile and they understood that continuing in ICU would just prolong his death. They seemed more concerned for his last days then the fact that he was dying. His daughter Terry really didn't like her dad hooked up to so many tubes.
S stands for Strategy: We set about a few goals of care. Number one goal would be to keep him as comfortable as possible and maximize what ever quality of life he would have left. So……
We removed the IV and foley catheter.
Kept the oxygen as it helps relieve anxiety
Kept the NG tube as it helped prevent vomiting.
Stopped all meds except those that will help him be comfortable.
Brought him to our unit and put on some music
Now, the family has taken over the room and Paul is no longer agitated as the morphine and antiemetic have taken effect. Paul Olmsted smiled weakly for the first time in days. It was a relief for everyone to be in a quiet space where they could be a family for one last night. Roxane told me not to expect to see him tomorrow. When patients have acute body wide system breakdown, their end is near.
Here are three kids going to see their grandfather one last time. So they went into room 8 but came back out after about minute because their pops said something about cookies. I had to laugh. Even at the end of his life, Pops is still always thinking about others. At the hospice we have a steady supply of freshly baked cookies. Every afternoon a new batch is baked. Today we had oatmeal cookies. Each grandchild took two plus one for their pops. Now they are back in telling him about their day. I wonder what they think? Do they think they might get old some day? Do they remember their grandfather during his better days? Will they grieve? Either way, I am grateful to see some young healthy lives in here. I am getting tired of so much death. Pretty soon I am going to start missing the people who have come in an out of my life. Sometimes this feel just like a bus station. People are just passing through.... Oh jeesh, now I am feeling sad. I need to go talk with nurse Roxane.
Roxane was busy writing a thank-you card. She has great handwriting and takes care to respond to families with care and grace. So while waiting for her to finish, I completed a quick sketch. Finally I could speak.
Me: Roxane, I can barely get over the 4 deaths since I've been here. How in the world am I going to survive the next 20?
Roxane: It is true that people come and go. We can't help but get attached to both patients and families. Well not everyone, ( ha ha) but still they are ours for a bit. Even though we can't stop the death, the family conflicts, the anxiety, we can help. And often we get to see great love, compassion and peace. Remember in all cases, death is a transition to better things. Lean on your faith. I don't think there are many atheist here in hospice. Believing and accepting the cycle of life will get you through the bad days. Plus you are not alone, we your staff are all in this together. We are not only here but for patients but also for each other. Come over here and get a hug.
Me: sob sob
Trudy in Room 4 dreamt she was a clown fish stuck in her fish tank and trying desperately to find her way back into the ocean.
Hans Biedermann writes that water "is the fundamental symbol of all the energy of the unconscious"
Now it is time to meet one of the most important members of our team. Our social worker, Elaine C. Worthey. Even though she has more than her share of a workload, she is somehow always able to provide an ear for listening and a shoulder to cry on. Even if it means I had to follow on the way to her car!
But first, a recap of yesterday. It was my first Sunday shift and I think I just lost it. Not that I cried or anything like that, I just got really clinical. I focused on what people needed and did those things in the most efficient order possible. thing. I was a task master with a big plastic smile on my face. Yes Yes, Mark was doing great with Rupert in room 3, but there was a death in room 8, a new admit in room 2, and a very tired looking Mrs. Hamilton in room 5 who appeared lost and lonely.
SO I did my job, but didn't stop to breath. I tried to avoid the emotion. But acting like robot nurse wasn't my plan. Instead, I want to bring my heart with me into every room and not shy away from caring. This is why I sought out Elaine.
Elaine: How are you doing Kate?
Me: I feel a bit numb, like my brain is taking over and trying to protect my heart. And yet each death is adding up and asking for some kind of closure. I’d like to know that when a patient is “discharged” that they are ok. Ideally, I’d like a note from heaven saying the patient has arrived safe and sound and that my job is over.
Elaine: I see. You heart wants to know that the connections you make count towards their safe passage. And yours as well. You are looking for completion.
Me: That’s it, and it isn’t just about the patient’s journey. It is about the families as well. All I can do is be the calm witness and right now it feels more like I am putting up a fortress of cold indifference.
Elaine: Tell me about your sketching. I love your drawings, do you feel cold and detached when you sketch?
Me: No the sketching is quite calming. It puts me in the moment. When I sketch I feel I am able to honor the space of what is happening right now. I am not as worried about what happens later.
Elaine: So when you aren’t working your to do list, you can relax.
Me: Yes, it is hard to “take care of business” and relax at the same time.
Elaine: Indeed that is the challenge. So is there anyway you can use your art to help you with their safe passage.
Me: What? Like Harold and the purple crayon? Now that is a good idea! Thanks Elaine!
Dear Blogees, my first note from heaven arrived today!
Dear Nurse Fanny,
This is Jeff here from the heavenly skies. I just want to say thanks for the loving send off Katy, it made all the difference!
DOG spelled backwards.
Dear Nurse Fanny,
Mrs. Morton has arrived safe and sound in heaven. She says to think of her, the next time you pluck a dandelion and she'll be right there with you. Thanks for being you Kate, you make a difference!
Trudy has made her way back to the ocean she was born in and is soon to be reunited with family and friends.
Thanks for helping her bust loose.
The Big Kahuna.
Death is not extinguishing the light;
it is only putting out the lamp because the dawn has come.
My orientation has come to an end. And so has yours. There is still so much left to share but I must leave this blog. Even though, I’ve changed names, I am in fear of breaching the HIPPA laws. So wish me well as I continue as a full fledged Hospice Nurse.
Every day is getting easier. We the staff get to witness and be part of intense connections. Some are between long standing loving relationships of mothers and daughters, while others are between some relatives attempting to resolve tensions. Either way hugs are frequent and moments poignant. We hear lots of “I love yous” whispered up and down the hallways. Apologies, thank-you, and good byes are murmured as well. We the staff often become the surrogate child, or trusted friend for at least a little while. So many patients have big smiles for everyone who enters the room. Their eyes become brilliant while their bodies fade. I am getting good at hugging with equal parts of crying and laughing.
I think I have found my place in the world. We are all going to die, and this is a place not to be ashamed about it. Instead it is a place to be alive in the present moment in the fullest possible way. Perhaps this is because here the brevity of life is painfully clear. When the pain can be managed and rest made available, our patients bring such tenderness to all of us. On leaving, our visitors at very least, feel lucky to be healthy and have a good functional bodies. And that is something that ripples into their everyday life. And our patients leave to what I now know to be a better place. The mystery remains, while the fear continues to fade.
Perhaps most importantly I have learned to celebrate each and every life. It doesn’t matter if they have seen their ancestors coming through the walls to greet them at the pearly gates, or if they simply close their eyes, one last time while drawing their last breath. I know now, that we all head to the same wonderful new beginning.