Carry on....

Many have heard me say so many positive things about hospice care, but it occurred to me that I have never really written about it.  I think I figured the longer most people did not know the details, the better off I would be….will not be the first time I have made a ridiculous assumption and fair warning…I am sure it will not be the last. But here is one of my new most favorite “ah-ha” discoveries.  As people you can divide us by gender, race, religion, hair color and this list can go on forever, but the reality is there are only 2 kinds of people…Alive ones and dead ones, and for the record, I am in the alive category and quite like it! The choice is not if we carry on, but how we chose to carry on.

Most of the time a friend or acquaintance will hear the word hospice, gasp, and assume I have one foot in the grave and death.  That’s a fair assumption.  In the beginning, is was what hospice was.  Allowing people to die and home with dignity, no tubes, no drama.  And they do still do that.

However, “palliative” care has been overlooked and the state of Florida discourages doctors from practicing palliative care except under the umbrella of hospice. Actually, I suspect this is more about the doctor’s liability and lawsuits for the insurance companies.  Palliative care does not try to cure what we all know is uncurable but helps us manage the symptoms and our other resources.

Palliative care is awesome.  The regular cardiologists were going to kill me and my savings account even with insurance with all of their chronic and quite frankly horribly invasive testing! Hospice care sends a nurse to me once a week (no more camping out in doctor’s waiting rooms and exam rooms for hours, my meds are mailed to me) they manage my symptoms ensuring that I have the best, most productive, painless life possible for me. 

There is no doubt in my mind that I would be unable to do one half of what I can do today without their help, guidance, and the constant changing and addition of symptom controlling meds.  But if I can leave one bit of wisdom with you, it would be… do not wait for the typical rule, which is waiting  for your doc to tell you there is only months or weeks to live before.  Hospice and palliative care can give you so so much more and I was so incredibly fortunate to meet with this man and spend a couple of hours with him before making any of my big decisions, I have never regretted it!

"Carry on" Croby, Stills, Nash, and Young

Who is in charge here?

This pretty much sums it up… ”The who is in charge here” dilemma is officially solved!  I woke up this morning with paws in my lower back and squished into one-quarter of the available width of a queen-sized bed and flipped back the covers.  “Not My Cat” has officially staked out his section of the bed.  We have had this “discussion” on several different occasions as I politely move him to the end or the other side of the bed.  He typically grouses but curls up and falls back to sleep.  This seems to be a new tactic.  Wait until I am good and asleep and then claim the territory unnoticeably inch by inch throughout the night. Cleary I am losing the battle.

                    "I'm a Loser"  The Beatles

Spoiler Alert....

This is going to be a long one, so sit back and get comfortable.  My dearest friend, Terry and I were talking, and although I was aware of the fact that I had just gotten another boost in the pain killers, I seemed to be a bit freer and gigglier than normal about talking about what my body was and was not doing as my organs begin to shut down.  The biggest and most hilarious part of the conversation had to deal with my intestinal track not operating correctly and the effect of egg salad has on that process, I will let you figure out the rest.  But the point I was making was this was not part of the fucking (excuse me) Heart failure comic book hand out (really, they are written like a comic book) they gave me one every single time I checked out of the hospital and I have many copies of the damn thing, believe me I know it by heart (no pun intended).  It has been a while since I have written in my blog, and Terry asked, “Why don’t you write about this?”  My answer was, I don’t know….who wants to read about egg salad farts?

Ya just got know you are headed for shit
when a black crow lands on your head.

It occurred to me that the one thing I have craved for the past few years was a tribe.  Not an artist or friend’s tribe although I loved them dearly because we share so many intimate and personal things, I need an "I am dying" tribe.  People that know the life, the love, and the fear of dying.  Now let me make myself clear, I am not looking for a “support” group, been to a few and they were full of whiners, whose main topic of conversation always centered around who had the biggest scar, the longest medicine list, the worst and the best cardiologist.  It was like a heart failure pecker contest!  Oh, there were a few knights in shining armor that were convinced they would fight this with diet, exercise, herbs, meditation etc. but they were only interested in showing all of us how much time and effort they were putting into not dying. Where are the people who accept what is happening to them?  The ones who are trying to live their best lives NOW, because that is what we have.  I want to be a part of the tribe that is not afraid to share the good, the bad, the philosophical, and the funny things that are happening to me on this journey.  In the beginning, I spent so much time and energy trying to convince everyone how “well” I was, regardless of how much energy it took.  When I could not do that anymore, I was ashamed. Certain that I brought this on myself and did not deserve any help or sympathy to combat the “monster” of my own creation I began stepping away from my own life.  Now it seems like it is time to tell the truth, the good the bad and the ugly, including the hysterically funny.  And please believe me there are some really funny things!  This will not be easy for me to write or you to read, but maybe, just maybe somewhere in my words, you might find a morsel of truth or comfort.  But then when this is all done and over with I promise you I will only be able to tell you the 2 things I know for sure...and I already know what they are now.

 

SPOILER ALERT:  #1 Nothing stays the same, EVERYTHING changes and 

#2 Everything dies.

"Iris"  The Goo Goo Dolls

Woodstock

I know it has been a while.....been a really rough couple of weeks, but I still needed to pay homage to my generation
and then marvel how much things change...they do still stay the same.

Then I was reminded by FB friend  

"We are stardust
We are golden
And we've got to get ourselves
Back to the garden"

"Woodstock"  Crosby Stills Nash and Young 

His death anniversary came and went......

His death anniversary came and went.  It was hard, but made a little easier with some medications.  It was a day of overwhelming grief and a day of equal and opposite memories and joy.  Most of the day spent alone in our space and part of the day spent with family.  It seemed only right and part of closing the circle the other people that were thrown into that horrible day (Darren & Jill) had a chance to spend some of that day together again.  The most profound thing that happened was the young man at work that Skip had developed more than a coworker relationship but a true mutual admiration, the young man that was with Skip as he died.  I have always been so grateful that Skip was not alone but with someone he knew and cared deeply about. This young man called yesterday to check on me, which was so sweet and kind, he confessed that he had a difficult time of dealing with the fact that he thought he should have been able to do something.  I had totally forgotten what a trauma that must have been for him, too.  I am so glad he could share that grief and healing that I had no idea had such an impact on him with me.  I did help continue the healing. And then….this beautiful bouquet of flowers arrived from my sisters.  It is a new day and a new year.

Auld Lang Syne.....