To be continued ...

It's been hard to put my feelings into writing lately.  Dad will wake up for a day and be pretty alert, and then slip back into mono-syllable responses or 30 hours straight of sleeping.  Every day he seems to have slipped a little farther away, but he's still here.

That scene from Monty Python's Holy Grail keeps going through my head:
http://www.youtube.com/watch?v=kllZsaNGtVg

This is the one of the death cart coming around to collect corpses during the Bubonic Plague.  Actor 1 brings in a body and the body starts saying I'm not yet, I feel happy, I'm getting better, Look I can walk ...  The first actor then keeps saying he'll be dead soon and it's almost over and is there anything he can do.  And then the death cart guy smacks him over the head and moves on.

I'm the creep that's trying to send my dad to his grave before he's ready to go.  Dad is the half-alive man assisting that he's ready to get up and dance.

We live in such a throwaway society.  It feels like I'm trying to throw away my own father right now.  The GUILT is insane.  Yet this is exactly the life he never wanted to live.  After the first diagnosis 4+ years ago, he and mom both made detailed living wills.  He specifically signed a DNR allowing the discontinuing of nourishment if he was stuck in a body that was useless and losing mental capacity.  He's there now.  And he's been there for a while.  But he still has lucid moments, and his only enjoyment these days seems to come from eating.  I'm not going to take that away.

And ever since the surgery last September, there haven't been any heroic life-saving measures.  But he has a healthy 66 year old heart and lungs behind a brain sending out all kinds of crossed signals.  He's slipping away but it's a very painful fade-to-black rather then the overly scripted deaths we've all seen too many times on TV.

And maybe that's my real problem.  Death is the end of the story, and we all know how long the book or movie is supposed to be.  Problems are supposed to be solved at the end of an hour show, maybe an occasional cliff-hanger to carry us over to the new season.  But real life isn't neat and tidy.  Real life is awkward, and doesn't have XX pages left until the end of the story.

I've always lived my life in fast forward.  Looking ahead to the next milestone and not really stopping to smell the flowers.  Right now, I need to live in the moment and enjoy the lucid moments with my father.  While these aren't the memories I would have chosen as the end of his story, they are the reality.  And I need to face it.  Real life is hard sometimes.

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.