Thursday, March 6, 2014

It seems time to tell the dying story.  We were so very much about living.  Dying came without preparation.  Looking back, we had clues, but they were too subtle for our  much-about-living minds.  Jed's pattern for the past five years was to get something in the fall that sapped his energy.  One year shingles, another pneumonia, another cold and flu.  We accepted the pattern.  It made us sad, because he would spend all year building his strength, only to have the fall and winter take it away. But, it was indeed a pattern we got familiar with, and knew would move, predictably, into the rebuilding time. 

It's hard to remember specifics because each day was dealing with the moment, but sometime during the fall, Jed complained with greater vigor of his pain.  It was butt pain.  He kept telling us that he needed a different cushion, and, or, greater support.  We massaged, we cushioned, we supported.  We ordered stuff that might help, we brought in the specialists.  We even convinced his doctor that perhaps he had structural damage, and thus he had an MRI.  He got steroid shots in his butt, and we even got his medical marijuana card, and provided him with tinctures, rubs and even happy cookies to help alive the pain.  Nothing much worked, even though everything helped a bit. 

This is how we spent the fall and winter times.  The holidays.  He was rather miserable, but didn't complain.  We had Thanksgiving.  We had Christmas.  Both were times where he asked to be in his room much sooner than his usual pattern.  He tried to participate.  He wanted to participate.  He didn't have the strength.  We continued to believe that this was just his, "fall/winter thing" and would pass. 

I brought Hospice in.  I was so comforted by their presence.  They provided the medication, the nurse, the bather.  I said to them, "Jed won't qualify for Hospice because he's not dying."  They told me that because he is "declining," he would qualify, and I gladly accepted the help.  I had no idea.
I even thought that I was somehow cheating the system for having them be so helpful to us.  The help was so welcome, because we were so tired. 

So, we were a marijuana, hospice, try-anything-family, and Jed was open to it all.  Pain alleviation was primal and we weren't doing very well. 

I left for a few days to Colorado.  Elnora came to help Ubaldo.  While I was gone, the three of them agreed that they needed to get more help.  The hospital and an ambulance seemed wise.  When I got home, Jed was in the hospital, but seemed in good spirits.  We were required to wear masks and gowns because even the hospital thought he had the flu. 

His brother, whom we hadn't seen for donkey's years came to visit, and Jed and I watched the playoffs for the Super Bowl.  We had a great day and expected him to be sent home soon.  Even the hospital felt good about him, and put him in a less intensive room.  He was moved up to another floor and we were given the hope that it was because he needed less monitoring.  That night, after making sure he had all the comfort and care that I felt he needed, I said good night to him, wrote my phone number on the white board, told the nurse to call me any time, and went home for some much needed rest. 

The next morning I woke rested and happy that the hospital hadn't called, took my shower, gathered a few things I thought Jed might want and went to his room.  He wasn't there!  The bed was empty.  Shock set in, but before I went crazy the nurse saw me.  "Mrs. Young, we tried to call you many times......"  I looked at my phone for the first time in the day and, yes, indeed, they had tried to call me, but I had heard none of them.  Was the phone on silent?  Was I just too tired?  The story unfolded.  He had been intubated in the night and taken to intensive care. 

This was the beginning of the end, but I still didn't get it.  After several days of intubation, he was extubated.  Bravo!  We're back on track.  Why did those people do that in the first place?  Timing was perfect and Jed's son, Matt, visited.  He and Jed had a wonderful time together.  Tori too.  Pure joy. 

We were keeping a vigil.  Ubaldo, Elnora, Candy, Daniel and I.  One night Cynthia took her time so that we might get rest.  But after he was extubated and we were all feeling good about his wellness, we agreed, with his urging, to go home and let us all rest.  It was in that night, another Sunday night, that he was intubated again. 

So here we were, tired and confused.  He was draining fluid by the liters, he couldn't speak, because of the tubes and they had ruled out pneumonia and almost everything else by many tests and x-rays.
The doctors were stumped.  It wasn't flu.  It wasn't pneumonia.  It wasn't congestive heart failure.  But, no one knew what it was.  Fluid kept draining.  On Monday or maybe Tuesday, they did a CAT scan and, there it was.  Cancer.  Cancer, of all things.  Five years of struggle with everything else and it would be cancer. Esophageal cancer.  It was a confident diagnosis.  Stage.....way too far gone to do anything but pray. Pathology would verify on Thursday. 

Wednesday night I didn't want to sleep.  I tried not to sleep.  It was that crazy, I need some control here, if I don't sleep, tomorrow won't come, kind of night.  I finally, out of exhaustion, slept. I knew that Thursday would be a very tough day. 

With little sleep and even less confidence, I was awaken by my father, who said, "wake up, Sherry.  Today will be a hard day, but it won't be too bad.  Get up.  Put on some make up and don't forget to comb your hair."  That wouldn't be too big of a deal for most people, but my father has been dead for about 3 years.  Wow!  When he woke me up, I was empowered.  I knew that whatever was to come would be okay.  After all, I got first had verification that Jed would be met by some remarkable people.  I had energy and confidence that literally came out of heaven.  Yep, indeed, I got up, put on some make up, combed my hair and faced the day.

The pathology report came in as we thought.  Jed wouldn't live much longer.  So, now I had to get him home.  He was not to die in the hospital.   Talks with the doctors, talks with the hospice coordinator, talks with the sweet nurse................"This is how we will do it......"  I was directional and made sure everyone was in line.  The doctors thought Jed would die in transient.  I told him, "no, he will not.  He will get home."  We got everyone working toward getting Jed  home. 

The ambulance backed up to our driveway and we rolled Jed out and put him in his bed.  We were provided morphine and had marijuana tincture.  We were set.  Jed knew, and probably was happy, that he was dying.  He took moments with everyone present.  John, Grace, Alicia, Mario, Jennifer, Daniel, Sarah, Candy, Elnora, Ubaldo and Me.  The moments were rich and important.  Words were said that will hold lives together forever. 

And then everyone went home or to bed.  Ubaldo and I stayed with Jed.  I sat in the chair holding his hand, and Ubaldo laid beside him with his hand on his heart.  Sometime in the night I got cold and stood up to get a blanket.  With that blanket, I fell asleep.  Jed died then, with Ubaldo's hand on his heart, and me asleep, holding his hand. 

After that, it was sterile.  The nurse came to pronounce him dead, the Neptune Society came to pick him up.  They counted pills and asked lots of questions.  I wanted to be beside Jed, but there were too many questions to be answered.  He was lifted up and taken away and a cheap plastic white rose was left on his pillow.  I threw that in the trash.  Don't cheapen his life with a stupid plastic rose. 

And so, he died.  We went the next day to the Neptune Society to pay for their services.  And now I have a box that is supposedly him.  Sometimes I imagine it as Pandora's box, but with a twist.  If I opened it, out would come all the joy and memories.  Out would come his laughter and the twinkle in his eyes.  Out would come his cussing and irreverence.  Out would come the adventures and the risks.  I would grab at them.  And then, I would be told that I already have them all.  They are in my heart and my memory and that I am so blessed for having them when they were real.

I so didn't want him to die.  But, as dying goes, he did it vey well and we will all be the better for it. 


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