A Broken Promise

That great philosopher and sage Mike Tyson said it best, “Everyone has a plan until you hit them in the face.”  How astute and perfectly said.

We got hit in the face.  I thought I was prepared, I thought I had a plan, I thought I knew how to handle it.  I let my own theories delude me.

On April 7th, a Sunday, Marty and I were headed to Dallas to see Hamilton at the Dallas Summer Musicals.  In the end, we didn’t see Hamilton and I broke a promise to my bride.

Right before we were going to get in the van Marty started really struggling to breathe, she was working hard to get enough oxygen and you could see she was losing the fight.  We blew off Hamilton and wore our theater duds to the hospital.

There was no doubt we needed to be seen now, when the triage nurse saw us, we were taken immediately to an ER room with a bevy of nurses taking vitals and hooking Marty up to monitors.  She was not getting enough oxygen, she was breathing heavily with her chest and abdomen and falling behind and the thing I hate the most, she was afraid.  She didn’t say it, she couldn’t really talk, but I could see it, she was scared…..she wasn’t the only one.

They tried several different things to help her breathing but she simply was not getting enough oxygen and was working her entire body to the extreme to get air, and she was still slowly suffocating.  I sat beside her gurney as they tried different machines and masks and I held her hand as she struggled.  Erica, caregiver deluxe, stood at her head, holding her head whispering prayers in her ear.  It was brutal, her trying to get oxygen was almost violent.

I contacted the kids, I honestly don’t remember if it was text or a call, but I think they read through the lines and immediately understood that this was different, this was, in a word that doesn’t do it justice, bad.  Matt got in his car and headed south to Waco.

After testing, poking and prodding, doctoring, nursing and breathing treatments seemed to fail to stop what was clearly a critical issue they moved us up to ICU.  We hadn’t been in the ICU in 14 years.

We got up to the Intensive Care Unit and found ourselves among some of the best health care providers in Waco.  Dr. Rod Ritchey, a small man with glasses and an astounding shock of grey hair to match his beard took over Marty’s care.  We couldn’t have been in better hands.   I was shocked, not shocked, when he asked me how we felt about intubation, he said simply, we are headed there, think about it.

Marty and I have had the talk, the one all of you need to have with your loved ones, the one where you talk theoretical bullshit about death and dying and how you want to go out and what you want those who love you to do if you are in a swirling drain.  I knew what Marty wanted.  But this was real, this was not theory, this was cold, clear reality.

I had promised Marty not to resuscitate, I had promised her that I would find the courage to say let her go if and when we faced that issue.  I promised Marty I would not have her intubated again, I had said those words to her, she had confirmed to me, that was her wish, that was what she wanted.

Those conversations played over and over in my head as I watched her, with a huge BiPap machine pushing air into her lungs, struggle to stay connected to the world.  I watched this almost violent drama played out, I held her hand as she squeezed my hand so tight the blood cut off to my fingers, I listened as she struggled to breath.  It broke my heart, if felt like the end of our journey.

Dr. Ritchey came back to me an hour later, looked me in the eyes and quietly said, “We need to make a decision, she can’t do this much longer.”  

I looked at Marty, my bride of 42 years, the woman who was my complete responsibility, the woman who had complete faith in me to do the right thing and I saw how afraid she was, how hard she was fighting and I thought about the promises I wanted honor, I thought about all of the times I had pretended I would have the courage to fulfill that promise.  

I couldn’t do it; this was too hard.  I told him to go ahead and intubate and put her on the life sustaining ventilator.

They asked me to step out and I walked down to the ICU waiting room and thought about the people we knew who would want to know what was going on, I thought about how afraid Marty must have been, I thought about how I was breaking my word to her, I almost got up and ran into the room to say stop, she doesn’t want this.

I didn’t, I accepted that tonight, I wasn’t going to keep a very basic promise to my wife.

That was Sunday night.  Wednesday they began to wean her off the vent, Thursday we were in a regular room, the next Wednesday we went home.

At least for a while.

Living with Dying

A million things, a million decisions raced through my head as I stood in the ICU looking down at Marty.  From the moment we got to the hospital I started planning, I started plotting to find a way out of this medical morass.  My denial of the complicated nature of her hemorrhage was a wonderful thing; it kept me sane, looking too far ahead, seeing what our future might be was emotionally deadly.

The simplest things are often the hardest.  The simplest things can often make the biggest difference.  Finding a way to deal with one event, one crisis at a time, finding a way to live our new life one day at a time was and is the single most important lesson I have learned over the last years.  

It didn’t come naturally; I was in business and management much too long.  I wanted to plan, I wanted to see the future, I wanted to know, to anticipate what was going to happen next.  I’ve never been comfortable with spontaneity or inconsistency; I wanted to be able to commit to something, I wanted to be able to plan ahead.  I wanted the comfort of a predictable tomorrow, a predictable month, a predictable year, a predictable life.  That’s what felt natural, safe and comfortable.  That is largely incongruent with catastrophic illness.

 After Marty’s first stroke it was one procedure, one calamity, one setback after another.  There were no days without some crises, the unknown was the only constant and all I wanted to do was see a safe tomorrow and take her home and get back to a sense of normalcy.  I focused on the end game; I continued to plan for the days ahead only to be disappointed by constant setbacks and consequential disappointments, every damn day.  

When Marty had the second stroke I was a bit more accustomed to the vagaries of big time illness, though I still kept looking ahead, looking to the future, seeking a trail for both of us.  With the experience from the previous strokes I should have known better, I should have been better at living, planning, moving on a day-to-day basis. 

When we finally made it home from the second stroke I wanted to be in the comfortable routine confines of home.  I wanted to see, live and feel a regular life.  Instead we started living with endless trips to the doctor, the emergency room and the hospital.  

When I looked ahead at our life all I could see was a horrible illness that was destined to end in death, that the only relief from this turbulence was the end of my wife.  I sat waiting for Marty to get sick one more day, one more time to get so sick she would die.  I was sure the next illness would always be the mortal illness.  I lived and planed her funeral every day because that’s all I would allow myself to see.

It wasn’t an epiphany, the angels didn’t wake me singing one morning, the clouds didn’t part, I don’t remember THE moment when Marty and I started living our life again by living each day, one day at a time.  I made a conscious decision to quit living in a dark future and instead tried to live in the moment and enjoy those series of moments. 

When you are dealing with a catastrophic illness where death is the ultimate cure it doesn’t mean you can’t live, you can’t enjoy all of the minutes, all of the days, all of the months and years before that ultimate cure.  At some point you must start living with the illness, not dying from it, you must forget the future and live each day.   Focusing on the day, focusing on the moment allowed us to begin enjoying life, enjoying each other instead of looking to a future funeral.

The single best thing I have done since Marty got sick is living on a more day-to-day basis.  Developing some sense of flexibility, learning to accept the vagaries of the day, giving myself over to the reality of our life has kept me sane.  I know by focusing on an unknown future I was limiting the quality of my life and the quality of Marty’s life. 

I’m not saying don’t plan, don’t recognize reality.  You have to plan, you simply have to understand your life, you have to look ahead to find help, doctors, equipment, legal advice and the like.  You need to have a plan for emergencies, you need to have tools, you need to know where the fire extinguishers are, you need to know where the hospital is, you need to have a will. 

You don’t need to plan a funeral every day of your life, you don’t need to borrow trouble, everything that happens is not a sign of impending doom and in most cases death is not waiting around the next corner.  A friend of mine once quoted her doctor as saying, “Just because you hear hoof beats doesn’t mean its zebras.”  It’s not always the worst case scenario.

For far too long I lived worrying about the worst case scenario.  For far too long I lived too many procedures in the future, instead of very simply focusing on what was right in front of me.  It’s still a struggle.  I still tend to want to plan everything and commit to nothing because things might go bad.  When I do it robs both Marty and I of the beauty and love of the present.  I don’t know how many more minutes we have and I hate to waste any of them.

Finding Graceful

Marty and I watched and listened as the trio gently played their strings. The classical music filled the lobby and the three college students, fixated on their instruments, entertained the frail, broken audience in the sub acute care center. The crowd was largely old and mostly very ill or recovering from being very ill. I sat there in the faux living room and thought about how our somewhat inauspicious introduction to sub-acute care had not necessarily belied the physical and spiritual grace we would find there.

Our first day there had come after a tough stay at a very crowded hospital. When they came to move Marty from the hospital to the new facility we were not suspecting or even looking for grace, we were both simply afraid.

Marty and I were in her hospital room when Big John, a huge man with an irrepressible smile, came and quickly and effortlessly scooped Marty out of her bed and into her wheelchair. I had seen how difficult it was to move Marty at this stage and held my breath, trying to help, trying to stay out of Big John’s way. His smoothness and his grace for such a big man were perfect.

As we made the move from the hospital to sub acute care fear, concern, and emotional exhaustion just flooded both of us. I was afraid of what I did not know, I was afraid because Marty was afraid..

As it turns out Marty’s room wasn’t ready so we had to sit out in a small living room area. The television was on, the sun was coming through the windows but all I could focus on was the overriding, oppressive, sweaty fear. Marty was cold, it was January, so I wrapped her in a blanket and sat as close to her as humanly possible.
It was the start of a three month stay there and a six month ordeal to get her home.

Over the next days and week we found a rhythm and got to know the nursing assistants who were the caregivers, the people on the front line caring for Marty. Knowing the people, knowing the routine didn’t completely dispel the fear, but the routine and rhythm began to help. I spent almost all of my time there with Marty; she was so vulnerable, completely unable to advocate for herself, so I stayed with her or one of our children stayed with her. Marty did not spend one night alone there; someone from her family was always with her. It’s good to have remarkable children.

As I watched the caregivers come in and help care for Marty I caught on quickly to the fact that the more you engaged them, the more they began to see Marty as Marty and not just a patient. We developed a rapport as through their actions they started training me in how I would care for Marty.

Back to the music. What struck me that day as I listened to those artists play their instruments is how similar their artistry was to the caregivers who helped care for Marty. As they moved Marty, as they turned her to bathe her or dress her, as they secured her to help her stand and move to the wheelchair, the best among them were doing it with as much grace and artistry as the musicians playing their instruments.

What I saw in the days, weeks and months at the sub acute care wasn’t always perfect, the lack of perfection drives the need to be there to help advocate for the most vulnerable. What I saw were constant little acts of grace and heroism each day.

I saw the old man come each day to be with his wife who clearly had been hit with a devastating stroke. He was there in the morning before I got there and still there on the days I would leave. His stamina, his desire to be there for his wife was simply astounding.

I saw the really large nursing assistant who came each day when we were there to help clean and dress Marty. I watched as this woman who didn’t appear to be particularly tender talk to Marty in quiet tones as she rolled her back and forth to first put on her shirt and then her pants. To see this woman you would never think of the word grace, to watch her care for Marty it’s what I still think today.

Those men and women who come to your room every day, the men and women who see so many Martys in their career are the people you count on to care for you or your loved ones. Those men and women, when they are good, ply their trade like a practiced cellist, moving with grace, passion and tenderness as the music they make with their work stays running through our minds even today. It makes you want to be graceful.

The 2nd One -- Part II -- Pneumonia

The previous post in this series -- The 2nd One Part I

I went back to Providence Hospital early the next day with a real sense of dread. When I left Marty in the ICU just a few short hours ago no one knew definitively what we were dealing with and I didn’t have a clue what I would find when I got to the hospital. I knew it was good no one had called during the night. I thought I had learned a lot from the previous stroke and hospitalization. I really didn’t know what all I didn’t know.

Marty had made it through the night comfortably. She had been monitored and well cared for in ICU. I figured she would be in ICU for a while, I mean she had a stroke, right? The ICU meant she would be under the constant watchful eyes of the best nurses, right? Wrong. We waited for a regular room to become available and then moved. The constant watchful eyes became my eyes.

We moved to a regular room, we had more tests; we got the definitive results, a run of the mill ischemic stroke as opposed to the hemorrhagic stroke six months earlier. One with too much blood, one not enough blood. It was good to know for sure, it was awful to hear the truth.

All of this happened to coincide with one of the few times Marty’s regular doctor, Great and Wise, took a weekend away from work. His partner took call for him that weekend. Marty had been doing pretty well given her weakness from the previous assault, she was reasonably lucid, starting to try and eat and already beginning what would turn out to be a long, tedious, heart wrenching program of rehabilitation. Then the pneumonia came.

Marty got really sick, really fast. They started her on two very powerful antibiotics. As she got sicker and as her blood pressure dropped the decision was made to move her back to Intensive Care. As I think back I’m pretty amazed at how fast all of this transpired and how truly clueless I was. I thought I knew about the medical milieu, I thought I knew how to deal with the hospital, I thought I was experienced. I really knew nothing about what we were facing. In this case my ignorance once again protected me. Sometimes if you can postpone reality it helps with survival.

In all of that has transpired with Marty there have only been three times when a doctor came to me and tried to prepare me for the worst. Great and Wise’s partner came to me, told me what was going on, what was going to happen, and then said, “I don’t know if she will make it.” The words kind of washed over my numb brain and left me speechless, a condition which just doesn’t happen to me. I simply didn’t know what to say or even how to react. I don’t think I really believed any of this was happening to us, it was all much too surreal.

ICU can provide a needed break to caregivers because in some, in this one, the visiting hours are limited and strictly controlled. The worst part of the ICU is you feel completely helpless and out of control, you are separated from the one you love. I was completely dependent on the snippets of time I got to spend in Marty’s room and the information the good nurses would and could provide. I hated not having constant access to Marty so I could see her condition with my own eyes, I did not like sitting outside of the ICU waiting for the next time the doors would open, and I did not like having to leave my wife alone through any of this time.

Marty’s blood pressure was and is today one of the best indicators of how ill she is. In this case it was precipitously low for her. To top it all off she was clearly allergic to one of the antibiotics she was taking and broke out in a horrendous rash all over her body. This seemed to bother Erin the most, she hated seeing the ugly, painful looking red splotches on her Mom and she hated that she just couldn’t get people to take it seriously.

The worst time occurred one afternoon when I was waiting for the appointed visiting time. I hated the waiting because I never knew what new calamity had hit Marty since the last visit, I hated the tension, I hated the surprises that waited, and I hated the suspense of waiting outside the doors. This day they were late opening the doors as all of the families waiting to visit patients were piled up waiting to enter the ICU. When the nurse came to the door she motioned for me to come with her. She explained the delay, Marty’s blood pressure had dropped so low they were afraid she wasn’t going to make it.

When I walked into her room Marty was very pale, her feet were elevated and they were pouring as many IV fluids into her as they could get. She was barely able to speak and recognize me. I bent over and whispered in her ear, “Don’t you leave me now.” She whispered very quietly, “I’m not going anywhere.”

Days later and the antibiotics started to beat back the pneumonia and Marty slowly began to wake up. I learned that if I stayed quiet and out of everyone’s way I could stay with Marty outside of the regular visiting hours. Occasionally some cranky nurse would make me leave, but for the most part they left me to my own devices and let me stay around and hold Marty’s hand.

The rash from the antibiotics still looked horrendously painful and irritated. Benadryl was given and cold packs were used to help relieve part of the misery. Marty’s overall somnolence was the only saving grace; she essentially was too weak to care and too tired to care. Being ill, having a stroke, is exhausting, and all Marty wanted, what she most needed was sleep.

Then one evening, kind of out of the blue, mostly because there were patients with a greater need for an ICU bed, Marty was moved. It was something of a miracle I happened to be there that night and watched and followed as they moved her out of the ICU. It was good to be leaving but I knew from experience we were leaving the comfort of constant medical attention and Marty’s family would need to be with her 24 hours a day now. I was already tired.