Caregiving Defined

Today’s my birthday.  Not something I normally announce.  This time, however, I am compelled to acknowledge the profound Grace that allows me to be here for it.  Most notably, my spouse and diligent caregiver, Wingman. I mean, check out that calm smile as we wait in my room before the surgery.  He was freakin' petrified.

We were married in 1995 and our joy in being together is pretty noticeable.  Friends often comment on how good we are together.  Wingman tells them, “you’ve gotta be friends first”.  Our friendship was the foundation on which we began, and the connection that’s held us together ever since.  We were buddies who loved each other for a long time before romance crept in.  The love has continued and gained strength over time.

We’ve had our disagreements, some of them serious, but we've been blessed with the courage to resolve conflicts as they’ve arisen.  We came to think of ourselves as seasoned partners.  Our experiences with hardships had equipped us to deal with whatever might threaten our union.

In October of 2000, I was diagnosed with Primary Biliary Cirrhosis (PBC).  It’s an autoimmune disease that attacks the bile ducts of the liver, in many cases causing the organ to eventually fail completely.  I was given a medication that slows the progress of disease, and we went on with life, not dwelling overly much on the prognosis.  For ten years, I enjoyed good health.  In fact, I, personally felt sure I was one of those people who would never exhibit symptoms beyond the mild fatigue I was already experiencing.

In February of 2010, shortly before my health began to take a dive, we traveled to Culebra, a tiny island just east of Puerto Rico.  We already had friends there, and we made more during our visit.  One of my island friends became my blogging mentor.  It was a well-timed gift to have this spirit-strengthening experience while my stamina still allowed me to participate.  Wingman, however, paid attention to subtle changes in my condition better than I did, and he would sometimes remind me, “hey stargazer, slow down. you’ve got a liver disease”.  He was my caregiver before either of us knew the full meaning of the word.

During the Summer and Fall of that same year, the fatigue hit me hard, and new symptoms cropped up which finally wore me down.  I applied for disability and quit working that November.  Several years prior, Wingman had been compelled to leave his job in order to care for his diabetic father, and then later when his mother began a slide into dementia. This is important to note in light of the fact that he was soon to become my caregiver as well.

Only one month after I left my job, I was hospitalized with a low red cell count and was given massive transfusions.  Wingman was right in there, asking questions of the doctors and everyone else involved in my care.

Over the next three months, we went through three emergency episodes of internal bleeding, multiple transfusions, and stays in the ICU.  My doctor called it cascading symptoms.  I called it an avalanche.

We became intimately familiar with University of Colorado Hospital.  Living only seven blocks from the campus was a blessing.  Wingman says they built it for us.

During most of this little nightmare, I was not in any shape to be proactive.  But Wingman was.  There were several instances wherein he had to stand his ground, and he did it effectively.

ER docs are continually faced with life-threatening situations, and Wingman had observed their tendency to work fast without knowledge of patient history.  Their priority is to save a life no matter what, so ill-advised procedures are sometimes performed.  I can dig it.

But my partner had learned to watch for hasty medical decisions, and he protected me like a pit bull.  I reminded him several times that he would be of no use to me if he got dragged out of the ER by Security.

The third time I had a bleed, it was an excursion into new territory.  An impressive amount of blood was coming up from my stomach or esophagus or wherever the fuck.  Two doctors who were not familiar with my case were about to perform some procedure, and they were becoming more ardent in their insistence after Wingman told them “no way”.  Not without the blessing of one of my doctors.

My spouse has the ability to convey an unsettling intensity (i.e. challenge) with his eyes.  Ultimately, a hepatologist was called in.

Later, while I was being intubated, Wingman had been banished from the room.  He sat cross-legged on the floor directly across from the doorway, listening, observing, making comments (to which he actually received replies).  Later, there was a period of time during which the doctors hoped to stabilize me by keeping me sedated.  I was left to sleep the sleep of semi-awareness that I couldn’t breath, but that somehow I was.  And Wingman was left to whisper encouragement in my ear.  Not so much sweet sentiments, but straight talk.  And though I don’t recall him speaking to me, he reminded me of a mantra to repeat within. I dove into the comfort of the mantra, wondering vaguely if the instruction had come from God.

Doctors would arrive in the room and find Wingman asleep on the couch, but already sitting up and becoming attentive.  One doc greeted him with, “My God, you’re still here?”  He eventually earned a reputation among the staff for his stubbornness, intuition, and likable nature.  For a guy who “doesn’t like doctors”, he hit it off surprisingly well with most of them.

When the tube was finally removed from my throat, allowing me to breath on my own, my eyes began to focus.  The first thing I saw was Wingman.  His face had assumed a chiseled look, as if he’d been holding his breath until that moment.  Tears brimming.  His features held a raw, unguarded mixture of despair and relief.  Never have I seen love clothed in such a way.

As one can imagine, the party wasn’t over.  There were no more sudden crises demanding an ER visit, but the trauma of the last incident kept us on edge.  Like waiting for the other shoe to drop.

After being placed on the transplant list, I underwent several procedures to ward off further assaults on my system, keeping me alive.  Wingman kept himself informed through all these events, during which he and my care team established a friendly, semi-grudging, mutual respect.

A little under a month before I received the transplant, Wingman’s mother passed away.  Even in his grief, he displayed a calmness, comforting his dad and the family.  Acting with purpose and taking things one step at a time.

Returning home after the transplant, I was basically helpless.  Wingman would squat by the bed, I’d wrap my arms around his neck, and he’d stand up, pulling me to my feet.  Everywhere we drove, he would get out the walker and help me get to wherever we were going.  It was a multi-tasking effort for him, because he had to watch me every second.  He was also in charge of my meds, which were always changing.

I was a difficult patient.  Somewhat incoherent, argumentative, and given to delusions.  I was downright hostile at times, accusing him of plotting against me and withholding my pain meds.  I tried his patience to the limit, and we had several unpleasant scenes.  There were times when we thought it had finally broken us.

As I regained some clarity, I was still so self-focused, that I didn’t often tell Wingman how much his caregiving meant to me.  And when I would try to, I’d babble.  I didn’t know how to convey what was in my heart, and I still haven't expressed it to my own satisfaction.  He made countless sacrifices, canceling his own plans and generally giving up any desires he had for himself.  Always sleeping fitfully in case I needed him, feeding me, helping me to the bathroom, buttoning my pants, bathing me.

His devotion was beyond my comprehension.  It is humbling to be the object of such a mighty love.  However, I've slowly begun to understand that I might be worthy of it.  And if that’s the case, I might have the power to return it.

Today is my birthday.  Thanks Dude, for your tireless love.

Words fail me.

RAM