"I want to go home. It's so very cold here."

Yesterday, a patient, shaking, naked, and bereft of the control over his body that he's had since toddler years told me, "I want to be normal. I want to be me again. I want to go home. It's so very cold here." The extent of conversation he'd had to that point was caregivers instructing him to get back in his bed, because he's too weak to be up. We are right.

And wrong.

Right to recognize the limitation of his body, when his mind can't. Wrong to not explore the capacity of his mind and body. Wrong to not fight for a more humane approach to his health, lack of health, and inevitable death.

Last week, in a similar situation, I asked an oncologist why we weren't having a conversation with the family about hospice. He replied, "I'm not ready to write him off yet." In fairness, this is a very compassionate doctor. I looked him in the eye and said, "I'm not writing him off either. I'm facing all the potential directions his illness can go, and wanting to keep an open mind to all the possibilities for how we treat him. He will die. How will we treat him until he does?" An hour later, the family came to me in tears - adjusting to the conversation the physician decided to have with them, and determined to bring meaning and comfort to whatever days they had with their dear one.

We stand over our patients, literally and figuratively. We address them with the same tone we do our children. Dismissive. Concerned. Coaxing them back into clothes, into bed, into the masks and tubes and lines they "need" to maintain the numbers we want to see from them. We neglect to find the strength in their weaknesses.

I crouched below this fellow human, and told him, "you're so very sick. And, you're in the hospital. Please tell me what you want." He looked into my eyes, and expressed the thoughts above. He talked to me of his "most wonderful wife."
When I swung into his room, just ten minutes before, trying to catch him from falling, and simultaneously direct his body back into the bed, he struck out with his hands and arms. Disoriented. Disrupted.

There's something here, on a grand scale about how we treat all humans. How we let every person maximize what they have. How we sit in silence, waiting for someone to reveal their pain, their wants, their needs.

There's also something very direct here. Talk to your loves. Learn what they want in the waning years. Tell them what makes life so livable and meaningful for you.

As for me: don't chase the numbers. Keep me close to the lives that bring me purpose and joy. Love me with presence, not interventions. And, listen to me. Ask me questions, and wait long enough for a disorganized mind to gather a response. That's living, now, and always, for me.

Service: Loving with the Gloves Off

Our church is doing a series of guided discussions right now on 5 commitments of membership: Prayers, Presence, Gifts, Service, Witness. I'm delivering the homily on Service, and guiding the conversation as all of us teach each other what that means for our community. Pretty cool really -- this wild, participatory style of church. We're working hard to elevate each discussion above simplistic lectures like "give more," or "pray more."

I'm unabashedly biased in believing my nursing experience is the highest practice of service, because it demanded providing dignity and respect in the lowliest of work. (I respect your right to believe your calling is the highest form of service. In fact, I hope you feel that!)

When I think about service, this story from my practice floods my mind inescapably.

I cared almost daily for a man very ill with AIDS, as well as a handful of other chronic, fatal diseases. On top of that, he had a couple antibiotic resistant infections. Going into his room required dressing head to toe in protective gear. He was dying. He couldn't accept that. He was gay. He and his family wouldn't talk about that. His illnesses were taking him down an excruciating path, toward an excruciating death, and he was not equipped to face and plan for that.

My job was to help deal with the symptoms I could ease, and facilitate conversations to help him plan. I had a clear agenda. I wanted to help him face his reality, and in that process, alleviate some of the coming suffering.

Shortly before the end, I went in for yet another visit. Garbed in a garish yellow gown and blue rubber gloves, and all the defenses necessary for my other patients, but that felt like brick walls between him and me, I sat beside his bed.

It's strange to me now that I don't remember what we talked about. I tried to discuss death with him. He shut that down emphatically. Perhaps we talked about his loneliness. I remember him becoming more and more emotional. And it became clear to me that he needed touch. Not safe, clinical touch. Human touch.

I removed my gloves and grabbed his left hand in both of mine. Skin to skin. And, he cried. He said, "I don't remember the last time someone touched my skin."

...

We sat in that moment for a long time. My agenda abandoned, and perhaps a bit of my clinical distance and superiority, too, I knew to leave this experience just where it was for both of us.

It was messy for me. Not just because of the diseases, or the tubes, or the particular thick and pungent humanity that coats long-term hospital patients. Because I wanted to take this guy from denial to life- and death-changing courage, and I knew our limited time frame. Service, in this instance meant shelving my agenda, and sitting very still. And coming back, despite fruitless attempts, and despite my brain twitching to steer the conversation down a "useful" path, over and over again. I had to let him teach me how to be his caregiver.

Service is ongoing. Messy. Demands presence. Demands you be aware of your humanity, and the humanity of the person you serve. Service requires humility. True service removes the barriers that keep us feeling safe and clean and separate from the humans we serve with, and for.

Post Script: After the rich, rich discussion with my church today, I want to add some of what they shared on Service. Two insights struck me most. The first associated courage with service. It takes deep courage to abandon agendas. Lost agendas mean lost control. Lost control means the neat lines making me server and you servee fade. It takes courage to subvert your human propensity to judge, and replace it with acceptance and forgiveness.

The second insight bluntly raised the spectre of suffering -- calling out our tendency to serve until the Other's suffering gets too close, too real, too implacable. At that point we pull away. The man above was dying, in pain and alone. Nothing could change that. And, as often happens, these circumstances perpetuated themselves. Because, most of us don't know how to sit in another's suffering, so we shy away, or become cheerful and soulless. We put on bright protective gear and pretend things are really better.

In the Gospel of John, Jesus removes his clothes, wraps himself in a towel and washes the well-traveled feet of the disciples. He took off the layers, and the one layer he added became the tool of his Service. He told them he meant this for a clear example of how to live. I can't even imagine how the world would change if we lived this bravely. But I know the moments that have changed me most started with removing the outer robes of pretense, or knowledge, or self-sufficiency. These actions deepened my experiences of serving AND being served.  

Hello you. You're lovely.

This is the fifth and final part in a series on self-care for care-givers. Physicians, nurses, mommas, pastors, teachers and unsung care-givers of every stripe I hope you find something restorative here. Post 1, Caregiver, Love Thyself, Post 2, Thick Line in the Sand, Part 1, Post 3, Thick Line in the Sand, Part 2, Post 4, But...The Lord Told Me To, Post 5, Tapped Out.

As we wrap up this series, I want to pose a few questions all caregivers need to face. The answers to these questions help you know/see yourself more fully, and that makes your work most meaningful and fulfilling.

Question 1: Why do I want to be a _________?
Knowing why you're a caregiver is critical to how you do that work. In counseling school they made us write out our answer to "why do you want to be a counselor." I think every caregiving profession should make this a requisite. The truth is, an honest assessment of yourself will reveal some altruistic motives, and some deep personal needs. You need to know both. Unacknowledged needs drive us. They take over our actions. It's no crime. It's entirely human to be helping others for personal reasons. However, when we have no way of owning that truth, and understanding those motivators, they undermine us and put an unfair pressure on the recipient of our care to perform in ways they can't know, and we may not even be able to articulate.

Owning the truth of our needs helps us put an emotional check in place when we see ourselves place those demands on others. All of us have places that need healing. Sometimes we use our work to keep from confronting that pain.  

Tapped Out -- Compassion Fatigue

This post is the fourth part in a series on self-care for care-givers. Physicians, nurses, mommas, pastors, teachers and unsung care-givers of every stripe I hope you find something restorative here. Post 1, Caregiver, Love Thyself, Post 2, Thick Line in the Sand, Part 1, Post 3, Thick Line in the Sand, Part 2, Post 4, But...The Lord Told Me To.


This post most closely fits those of you working in caregiving fields. Any work placing you frequently in the middle of others' traumas and problems puts you at risk for something called Compassion Fatigue (CF). Essentially, compassion fatigue is the caregiver's version of burn out. While many caring for children or aging parents experience elements of exhaustion related to that work, this syndrome particularly strikes caregivers who repeatedly encounter others, often at the hardest moments of their lives. Nurses, physicians, pastors & chaplains, counselors, I hope to reach you.

A story
I drove up on a fatal accident this Labor Day. Medical help not yet arrived, I jumped out of the car and approached a red Honda in the center of the road. The man inside needed no medical help. He was dead. I panned the four corners of the intersection, each littered with bystanders, looking for victims. The man's wife was covered in blood, crying in the grass. A quick assessment showed she had no external injuries. The blood was his. She called out for him. I could do absolutely nothing but crawl behind her on the hillside, hold her, and whisper things I don't remember in her ear. When medical services arrived, they took the same path as me. By the car -- help not possible; see bloody victim, approach. And then, as she screamed and cried out information about herself and her fears they yelled, "Ma'am, I need you to calm down." Over and over with this asinine phrase.

I understand the need in chaotic situations to create a presence of assuredness and authority. But this medical professional's response to the tragedy did not create calm. She exuded a detachment beyond that needed to perform her job safely. She demonstrated a need to protect herself from the gory mess on that roadside.

My guess is, she's encountered lots of tragedies that confront her with the fragility and mortality of our species, and the depth of our capacity to ache and grieve. She entered the medical field ready to pour compassion into these circumstances, and having poured it all out long ago, is now going through the motions of a job.

But... The Lord Told Me To

This post is the third in a series on self-care for care-givers. Physicians, nurses, mommas, pastors, teachers and unsung care-givers of every stripe I hope you find something restorative here. Post 1, Caregiver, Love Thyself, Post 2, Thick Line in the Sand, Part 1, Post 3, Thick Line in the Sand, Part 2.
 

Ironic timing: I'm preparing a series of posts on how religion reinforces a lack of boundaries and self-care and my teenage sister sends me a meme saying: "Always remember God added another day in your life... not because you need it, but because someone else needs you."

I'm tempted to drop the mic... er... keyboard, and walk away.

This thinking typifies the unhealthy Other focus that religion can propagate. Your life isn't about you. It's about Others. Burn out for God, for The Lost, for a Dying World. Words like these make too much sense to caregivers. They fit our default position of other-centeredness, and we run with them.

Housekeeping
My only religious background is Christianity, so I'll address that perspective.  Also, I'm still a Christian. The form of that identity has changed over the years, but essentially, I believe the radical love of Jesus Christ is the greatest model and hope for humans. This post is about spiritual misguidedness and abuse, not a call to end religion.

Moving On
I experienced mishandled religion perpetuating broken boundaries and broken people in several ways. I learned a poor theology of the person that corroded my ability to see the need to care for myself. I learned to distrust pleasure and rest. I absorbed an ethos of disproportionate focus on others, among other things. I saw basic human limitations labeled as sin and "heart issues."    

Thick Line in the Sand (Part 2)

This post is the third in a series on self-care for care-givers. Physicians, nurses, mommas, pastors, teachers and unsung care-givers of every stripe I hope you find something restorative here. Post 1, Caregiver, Love Thyself, Post 2, Thick Line in the Sand, Part 1.

Life has been busy -- I left my job, had my first public speaking engagement, preached a bit, and followed a baby around the house a thousand times. But, I recognize a reluctance to finish this post. Usually, that means I am still learning and relearning to practice the material I write.  That's a good, human, but humbling thing.

When we left off, you were supposed to breathe, express gratitude for your big heart, and love yourself by indulging in a pleasure. I hope you took the time to do those things. It's the hardest advice I give to caregivers.

It's also a part of learning to set boundaries. For us "Other Specialists," finding a sense of self, and self's desires, pleasures, expressions, helps us differentiate who we are from others.

Thick Line in the Sand (Part 1)

This post is the second in a series on self-care for care-givers. Physicians, nurses, mommas, pastors, teachers and unsung care-givers of every stripe, I hope you find something restorative here. Post 1, Caregiver, Love Thyself. 

The guy was dying in agony. An ill-informed physician and his lengthy drug history added up to inadequate pain medication. He'd scream and curse and spread filth everywhere. Some days his wife was sober. Some days she wove down the hall like someone slowly dodging bullets.

I became one with this family. I was the only nurse who would care for them repeatedly. Shift in, shift out. I read his wife's mood changes fairly well (although she yelled at me plenty). I spent all the patience I had at his bedside, tending the wounds he made worse.

I called to check on them after my shift, asking the current nurse about labs, or subtle changes. And nightmares -- I heard his screams in my sleep. I dreaded caring for them, and feeling guilty for that, tried harder and harder to be more and more, until his wife yelled at me for addressing her intoxication and kicked me out of the room. I realized I was in too deep and with tears streaming down my face, and great gasps for air, informed my manager I could not care for them any more.

He died several days later. I never worked far enough away to not hear his screams.

I wish I could talk to that young, passionate, and utterly broken nurse and tell her leaving this family in other hands was just that -- letting other people do their job. It wasn't a moral failing. And it was utterly brave to do something so counter to her culture.

Caregiver, Love Thyself

Self is a stranger to many people who never met a stranger in their life -- people who sense another's needs across the airport, but have no understanding of their own inner struggles.

These people are experts in the Other. They bore secrets, tended wounds, and ran to rescue starting in childhood. They gravitate toward helping professions like nursing, teaching, pastoring, counseling, mothering etc. So, obviously, I'm one of the people I'm talking about.

I coached a group of nurses on self-care yesterday. I always open the session asking "Why nursing?" so we hear why each chose this profession. Invariably, someone tells how they started caring for others as a kid. This time, to make the group aware of that common bond, I asked them to raise their hands if they had been secret-bearer, soother, bandage-applier, or other caregiver in childhood. Twenty-three nurses in the room -- 18 hands raised (mine too).

When you start doing something as early as childhood, your identity gets all wrapped up in it. Many caregivers don't know themselves without other people to care for. I didn't know who I was, because I built my identity to suit the needs of others.  It seemed natural to go into a profession where my daily work turns on expressions of compassion.

Not knowing myself, I couldn't create boundaries around my identity, capacity, and responsibilities. I never responded "no." I never turned off.

It still hurts to look back at how deeply this type of living wounded me and impacted my family.