Monday, March 7, 2016

Presenting at AAHPM with a panel of wonderful educators and providers about spiritual pain. 



73 yo woman with COPD, osteoporosis, HTN, CHF, obesity and obstructive  sleep apnea. Admitted to the hospital with shortness of breath and chest pain, R/o MI- 3rd hospitalization in 3 months, last time was discharged to SNF for rehab and she was readmitted 5 days later. MI has been ruled out but there has been elevated troponins thought to be due to demand ischemia.  She has a 42-pack year history of cigarette smoking. She is a full code.
She lives alone,  has been widowed 17 years, has 2 dachshunds and a daughter in Oregon who works full time. She has little involvement in the community now, her disease has isolated her.  She retired at 65 after many years working as an executive secretary. She tells you how much she liked her work and interactions with both clients and the public.  She was diagnosed with COPD and CHF about a year after she retired which is when she quit smoking.  She lives in her own home and has been getting by with help from a neighbor. She confides in you that she’s afraid that she will fall and wonders what she will do then.
Her husband died in a car accident when they had been married 32 years.  She went to some bereavement counseling at her local church but didn’t find it very useful. She was raised Lutheran and while she married and raising children, the family attended church but participation fell away as everyone grew up.  She states she believes in God. When asked how she copes with her disease and limitations she admits she just tries not to think about it. She doesn’t want to see the chaplain
  As you look at her you notice she has trouble speaking a whole sentence without stopping to catch her breath.  You note how drawn you are to her breathing when you enter the room. She is upright, on the edge of the bed. She moves the tray table back and forth, trying to fix its position in a way that will let her reach her water but she doesn’t seem to be able to make it right. Her skin is pale, dry, and thin from years of steroids. Her nails beds a bit dusky and clubbed. Her legs are edematous.  3/4ths of her lunch sits on her tray. With a bit of questioning she admits that she fell a few weeks ago and that her back has been hurting. Her doctor told her that she has osteoporosis.  She takes Tylenol but that doesn’t help.
You start goals of care discussion after asking if she wants her daughter called. She says no. You ask her what she’s hoping for and she says “ I don’t know” Probing a bit further, she starts to talk and states that she is tired of pain and worries that she doesn’t have long to live. She tries to ignore her increased shortness of breath and she confides that she has been frightened living alone. She is afraid of dying alone and in pain. You ask if she would like to see a chaplain and this time she says, “I’ll never forgive that pastor for what he said to me when my husband died. “
You  prescribe medications for dyspnea and research the usual avenues for chronic osteoporotic back pain such as kyphoplasty, physical and occupational therapy and muscle relaxants. You consider agents for neuropathic pain and wonder about antidepressants for both pain and her seeming depression but you know there’s no quick cure. You decide to start cymbalta.
The next day she is uncomfortable appearing, restless and grimacing. She has refused roxanol so you change the order to low dose IV morphine scheduled with parameters to hold for decreased respirations and / or sedation. She doesn’t want anyone to call her daughter and says she’ll do it in the next day or so. She states she doesn’t want to be a burden as her daughter is a single mother and works long hours. She confides that they haven’t been as close since her husband died.
 You notice she is more restless, picking at things, and unable to focus. At times, she’s irritable. Her oxygen sats a bit lower now and there’s evidence of worsening respiratory failure. She needs bipap at night but it makes her claustrophobic and she pulls at the mask. Labs are unremarkable.
The next night, she falls in a restless attempt to get to the bathroom.
The nurses are giving her the morphine every 3 hours and think she needs it even more often. There’s talk about putting her on a drip. You also now feel compelled to talk with the daughter who is confused and says, “I don’t know what has happened, this is nothing like my mom”.
You want this woman to be comfortable, but you remember the perky woman who was admitted 5 days ago and wonder how she got here. There’s been a nagging sensation that something has been crying out to be discussed, but it’s been hard to identify. You wonder what you might have done differently


the story acts as a container. It gives a framework for how to work with a patient. They tell us things verbally and nonverbally, by what is said, unsaid, a look across a room, a pause.. The list is endless and a lot of what we know about people is due to our own experiences. it takes a special person to work with those who suffer. And it takes someone who is willing to explore themselves so as not to transmit their ideas and opinions onto another and run the risk of losing a chance to connect. 
Many times it seems as though, in the bustle of modern day medicine, especially hospital medicine, the story gets abbreviated, assumptions are made, decisions are made on those assumptions.  We can measure our productivity by what we order, what symptom we've uncovered, what treatment we will try. And yet, in spite of our best efforts, all the medicine in the world cannot relieve some suffering if the emotional and spiritual components are not acknowledged. This presentation is to help us all identify spiritual pain during physical crisis that could lead to an amplification of symptoms if left unchecked. Why? because we are more than the sum of our parts. 


Spiritual pain
Pain insists on being attended to. God whispers to us in our pleasures, speaks in our conscience but shouts to us in our pain. It is a megaphone to rouse a deaf world.
(C. S. Lewis: The problem of pain)



Meaning- What would this patient answer if asked about meaning right now? She was an executive secretary with a prominent business in her town for many years, probably knew everyone and was quite involved. Now she’s homebound and likely is visited most by the neighbor who helps her with chores. What gives her a sense of purpose right now? What gives her direction? Does her suffering define her?
Relatedness: She has a distant, perhaps estranged relationship with her daughter since her husband died. Is this an issue for her and does it affect how she feels connected? Does she feel connected to anyone? Perhaps in the hospital she feels connected to her palliative care provider or a member on the team? What does that mean and how do you mange that with integrity?
Hope: The loss of hope is the most distressing of spiritual pain and the most difficult to uncover. Does she feel hopeless in her situation? What does she hope for now?  “ Do I trust what the future has in store for me?
  Does she need time and space and ears to witness her journey as she transform her own hopelessness into a place of hope? Remember what we hope for can be constantly changing and hopelessness at end of life is not absolute. Most people have resilience. 
Forgiveness: Who does she want to forgive? She had an angry reaction  at her church community but perhaps more importantly is she angry at herself for smoking cigarettes?  She might feel she deserves to be sick and feel guilty as well. She might need the space to allow herself her own humanity, full of frailty and pitfalls, just like the rest of us.
Forgiveness is an invitation to redeem failure- Doris Donnelly, Learning to Forgive.

Few choose the work of healing. It is daunting to journey into the depths of soul,
 To find places of suffering and
bring it to light.
It is the work of divinity itself.
Are you willing to pay the price?
Berach of Cannaught, 6th century

Much soul pain is reached and healed by the way care is carried out. Most people, given space by recognition of their worth as unique individuals and accompanied by an effective palliative care team, will draw on their own strengths and resources and reach a resolution of their inner pain. Dame Cicely Saunders





Friday, January 29, 2016

Dreams are just like that.


A screaming fit about coffee
grounds, windowsills and 
compost. 
There was the usual banging
together, he uses 2 hands to 
clean both the filter and the pot, clanging them on the sides of the ceramic pot. 
2 hands, Not one, but both, tap tap tap until I want to scream at him
and I did
you never, its always and he uses my words to not listen, 
which 
makes sense as I am screaming. 

In my dreams I wander 
mountains alone 
looking for sasquatch or
bobcats or wolves. 
I sail the whole of puget sound in a boat
navigating
by stars. I photograph
wars and wear my 
dungarees on my hips, my belly 
still concave and my hip bones 
an anchor for the waist of my
 baggy and dusty jeans

But, really, its just another day. I wake up,
go to work, and when I can’t stand another minute of it,
Create a tempest in a teacup
as Melvin used to say at the AA meeting. 
And I scream, my voices rises the more
he ignores me.
then I say "fuck” a lot, but never fuck you,
because honestly, he’s the best person
for me, partly
because he ignores my
tantrums. 
Im grateful
they are only a once
in a while thing, thundering when
the mountains
call, wars rage and
coffee grounds turn to 
clouds.




Tuesday, January 26, 2016

Los Angeles Catholic Worker and Skid Row

Coming home from  just a week at the LA Catholic Worker house left me with a renewed sense of duty. Duty to strive to live towards what I consider and say are my values as well as an acceptance to allow myself to fail at times.




We sat on milk crates, covered with ripped towels and soaked feet and delved into toe jam and fungus with orange sticks and dremels behind the mural of Christ in the Bread line in downtown LA. 
The parrot mural, bright back drop for our table of supplies was miraculously below a strange naked tree with green fruit that the parrots periodically visited while we worked. People came and had their feet treated and then came back again to visit. Meals continued as always and continue now while I sit here softly in my bed writing, flanked by my favorite morning companions, Spooke and Shadow, my house cats. 

 While in LA, we spoke a lot of destiny in trying to make sense of the tragedy that befell some people. Before going, I had always wanted to believe that people had control over their fate and I confused fate with destiny. I looked up the 2 words and it seems the dictionary on my I phone confuses them too as the definitions are exactly the same. Both indicate a predetermination, usually decried by an omnipotent being. If thats the case, then the people of Skid row and all other places where the conditions are harsh and inhumane, the ones who maintain their humanity and show kindness and resiliency even when it seems impossible to do so, the ones who continue to hope, must be the walking saints of the world. For how else can fate make any sense? 
But then, what of the people who resort to drugs and violence to cope? I ask myself this because I don't know how I would fare if the bottom fell out of my life. Would I be able to trust in God, in some  divine intervention bringing me to a place of utter vulnerability as acceptable? And if I couldn't maintain my faith, does it mean I am loved any less? Did Jesus love the sinners less? 

Richard Rohr this morning writes of restorative justice and within his lovely paragraphs writes "Love is the only things that transforms the human heart." And this is exactly what the workers who come to LACW do. They love. Simply and in action and in it they allow themselves to be the human people they are and, AND.. they continue to show up. And somehow, that is the piece that matters. By being there daily, they continue to bring love int he form of food, smiles, jokes, gardens, blooms, dentistry, blankets and everything else. It is a love of action, tangible and deep. Its the commitment to be present that makes them remarkable. For when it hurts, when the pain they view and hold space in their hearts for becomes overwhelming, they continue.





Monday, October 6, 2014

Is this is the very first grave in Pere Lachaise? Its on top of a hill, towards the back and near Edith Piaf. The legend? A 5 year old orphaned girl. Our guide ( yes, they have impromptu guides at the cemetery, Pere Lachaisians, they call themselves, old men, who gallop you across markers and tell bawdy stories about the cemetery as well as ones guaranteed to make one cry a little. I would imagine some of it is true. Ive spent a little time doing some research and it doesn't seem to be true that this is an actual grave. what I would say is that following Gerard around is a wonderful, entertaining and interesting way to spend a rainy day in Paris.

Saturday, August 16, 2014

The lame deer walked across the road in front of me, her fawn, dappled with snowflakes the shape of small moons leading her, waiting for her. I saw a small child with a sick mother, waiting, understanding even without knowing;
loving without understanding. 

The fawn waited. The lame one, the large doe, ribs showing and left front hoof destroyed and flipping over with every step needed time between each step to recover and prepare for the pain it caused. I wanted to approach her and use my hands to comfort her. I wanted to have them both lay down on the lawn of my neighbors and with my hands feel for the injury, perhaps make a cast, or an ace wrap, tell her RICE, give her my recliner and get an xbox for the fawn and let them live in the living room until her foreleg healed. 

As I stood there with my bicycle helmet on,  I gave her care from my heart in a straight beam that was as much love as I could send anyone and she moved slowly towards the next vine maple that her child was also enjoying, I felt my heart burst from care and knew that tears were coming too, so before I scared them and she felt compelled to run which would have caused me more sadness watching her suffer,  I turned the bike around and went home. When I saw my husband I started to cry from that place from deep and he tried to comfort me but I wanted,  no needed to cry.

I thought later of the people I had worked with these past few days, the Korean woman with the bad lungs who died 40 minutes after extubation; the drunk who fell and broke his neck and lastly, the sweet woman with no family, who had left everything to the caregiver who was a little afraid the family would balk. All of them, dead.  I saw daughters faces as parents lie in bed, gray faced and panting, no amount of morphine going to stop the dead breathing we all have, the breath of a gasping fish. We call it guppy breathing, us old ICU nurses and who ever hears it knows immediately what we mean.


I can’t help the lame deer. I know she lives behind Johns house and feels safe there, but she will probably not make it through the winter. The baby will lose its moon drop spots and grow, hopefully. At night I expect to hear the raucous noise soon of the coyotes, celebrating their next big feast. And I hope its one not two. 

Thursday, August 7, 2014

Camping

I returned home this week from a glorious camping trip. I don't know why I love living outside so. I doubt when I was a young girl and I envied the girls who got to come home and play in their school clothes, complete with knee socks and penny loafers and skirts, that I would be the one to really love living outside and sleeping on the ground.
We went to the Hoh River and found a site at a DNR campground. DNR campgrounds are free if you have a discover pass so they tend to fill up quickly. We were lucky that we were "chosen" to be a member of their tribe. Several of the residents were living there, sort of. When we drove through looking for a spot everything as taken. We were a bit dismayed as it was getting late on a Friday afternoon. As we were rounding the corner, a woman, about my age, maybe a little older ran through a campsite to let us know that one of the sites was being "saved" and that we could have it. She told us we looked like the kind of people who would belong.

Its not easy for me to find my tribe. All my life I have felt just a little bit different that anyone else. I seem to be a jumble of paradoxical information that all makes perfect sense to me. But here, we were chosen by her. She introduced herself and as the days progressed we found out more about Marge and Mel and Eddy and realized that while I might not have had anything in common with them on the surface, the real glue that held us together was our love of the land and water, and our basic humanity and deep human kindness.

Marge ended up giving us a book she had written on spiritual seeking. She reminded my husband of Peace Pilgrim.
peacepilgrim.com
A woman who walked for 28 years for peace. I don't know if Marge was her, but sitting around the campfire, talking about the Perseid's and how a board game she developed and plays with friends over email to promote deep conversations about beliefs and stir thought pretty amazing. Her book is delightful, inclusive and deeply connected. I hope to find more immortals like Marge as I travel this earth. Marge identifies herself as immortal, doesn't give her age or other identifying information. she believes, as I do that the soul never ends. It just keeps seeking. Of course, given the work I do in Palliative Care it brings me to wondering about the nature of death. If our souls persist, then what is death, the act of death like?

What if dying feels like this? What if the very nature of our beings is to manifest in color, fire and spread? What if our nature is to ramble and flow, a life giving force in itself? With love

Tuesday, June 17, 2014

This evening I met with the man who has been teaching the writing class at our local senior center. Im not quite a senior. I imagine I have to retire to be a "true" senior, but I am old enough to take a class at the senior center. The class was 8 weeks long, meeting once a week on Tuesday evenings. There were 8 people in the class, all of us close in age, sort of.

The class was a a mixed bag of prompts and critique with an occasional lesson thrown in. The strength of the teacher? His amazing honesty and critical eye for what is good and believable about everyone's writing. He was able to get it through my head that my writing is worth reading by someone. For so many years, I have been paralyzed by reading brilliant writing. I then felt my writing could only be shared if it was perfect.

 I now believe I am a writer because I write. Is everything perfect? No. Are some things worthwhile? Maybe. Do I have fun doing it? YES!! A big YES.  What a gift to be given by another writer.

 Writing and sharing writing is not about an ego trip as much as its about sharing yourself for the joy of it and to build community  with others. Its another way we extend a hand out to someone, either by making them laugh, or cry, or just saying hmmm or ahhhh. It allows someone who reads to recognize themselves in someone else.