The Slippery Slope, The End Begins

Dad is losing control of his body temperature.  It's swinging back and forth from cold to fever and back again.

This is an end stage signal that his body is shutting down.   So is the fact that despite large doses of steroids he is no longer interested in eating or drinking.  He's getting hard to wake up, and quickly falls back asleep.  The end is very near.  

Ed and Lanna are coming down from Maine, me and Robert are cutting back to bare bones crowd control at Da Vinci.  And we are watching and waiting for the end.  I've never watched anyone die.  I really wish it wasn't my father.  But I know that my heavenly father loves me and has a plan for all of our lives.  And I know that Dad will be resurrected to a perfect body in the next world, and will wait patiently for his wife who better stick around for many years.

To anyone checking in, my dad is Henry Davis, Ph.D.  longtime owner/operator of the Weed Doctor in central NJ.  He was a long-term Unitarian Universalist, active in the Princeton, Washington Crossing and Bethlehem Unitarian Churches and the UUMAC community.  The end is very near, but the love he is leaving behind will be long remembered.

Working Overtime while Dad is dying

My dad has been living with Brain Cancer for 4.5 years.  He's been dying with Brain Cancer since he had a stroke during the tumor removal surgery in September, 2012.  

Living with Brain Cancer, and probably any other fatal disease is about learning and trying different treatment protocols, following the latest research and aggressively advocating for yourself to live life to its fullest.  It's about taking that vacation you always dreamed of during the good months when everything is working; and living in fear and dread that IT will come back.  A shadow on an MRI strikes fear into your heart.  A clean MRI brings a smile and extends that hope.  Everything can be OK for today, we'll worry about tomorrow later.

Dying with a disease means facing the inevitable.  Too much is lost to ever make right.  This isn't a stable new normal that you can embrace and enjoy, but it's trying to maintain some control while sliding down a rocky slope.  You often feel like one wrong move will start an avalanche that will destroy you, but you can't climb up and you can't find a way around.  

In dad's case, dying slowly also means the need for a lot of assistance in the daily details of life.  Dad's biggest wish right now is to sit down on a toilet to do his business and then take a long, hot shower.  Unfortunately he uses his diaper and a sponge bath, not at all the same.  It also means that a lot of the time in the nursing home and now in the home are caring for the basic needs.  Bringing him food, cleaning up the food that he spilled everywhere, and then cleaning up the diapers.  

Only once in the five weeks that he's been home so far have we used his hoyer lift and his wheelchair to bring him out to eat at the table.  It's a lot of hard work, and ended up being very painful for him and for us as caregivers.  But it was a moment of dignity for him, and we'll try to do the rearrangement and minor carpentry to do this again.  Eating around his bedside just isn't the same.  But even taking the time to prepare and eat a meal as a family seems like too much work a midst the chaos.  

And maybe that's the real problem right now.  Being home with Dad feels like work.  It feels like a full time job of get me this, and clean this, and make that.  It's loads of extra laundry every day.  And stinky diapers that turn my stomach and lingering odors that do the same.  It's not getting to spend time with the lucid, wonderful father that I remember.   But the demanding over-sized infant that he's become.  If it's that much work to be home, and my job is short-staffed and offering part-timers temporary overtime.  Is it that wrong to work overtime while my dad is dying?  Of course it is.  But I'm doing it anyway, because the creditors keep calling, the bills have stacked up, and there is no way to get a professional job when I'm this distracted.  I'm sure the guilt will linger far after the paychecks have been spent.