Close to Home ... A hospice murder/suicide

Yesterday something far too easy for me to imagine happened less then 2 miles from my home:

http://www.mcall.com/news/breaking/mc-allentown-lehigh-valley-hospital-murder-suicide-20130319,0,2694606.story

A couple who had been married for 64 years, husband killed his wife who was being forced out of inpatient hospice after only a week.  He then shot himself.  She was basically blind, paralyzed and in terrible pain.  She was in hospice, but she had temporarily stabilized.  Inpatient hospice doesn't like to house patients for more then 10 days.  So he was told he had to find someplace else or bring her home.  He felt he had no choice but to end everything for both of them.

And here we hit a lot of personal experience.  When Dad was first diagnosed with his Brain Cancer, he spent almost a month in ICU, finally received his surgery after we initiated a transfer to a university hospital, and then returned to a nearby rehabilitation hospital.  One week later he was home, and 2 weeks after that he was discharged from outpatient physical therapy.  He was then able to do chemo and radiation on an outpatient basis from home.

When this tumor recurred last August, we envisioned a similar plan without the long initial stay in the ICU.  Unfortunately, Dad wasn't getting better.  And even more unfortunately, everyone we met that was involved in "discharge planning" was less then useless.  After tracking down a social worker who was probably covering 25-50 patients, you were thrown some brochures, a bunch of forms with tons of detailed financial questions, and oh yeah, medicare says we aren't allowed to make any real recommendations.  The bewildered family (if there even is one) is forced to try and wade through the difference between assisted living, transitional living, acute rehabilitation, long term rehabilitation, sub-acute rehabilitation, nursing home care, hospice, home health aide, visiting nursing, private duty nursing etc.  All those terms give me a headache now, let alone when you want a safe (and affordable) place for your dad to be, TOMORROW.  Me and mom did the hasty tour of a dozen local nursing homes with no notice in two days.  I wouldn't make any major decision that quickly, but you want me to send my dad someplace with a 15 minute tour and whatever information I can gather on-line.  Oh yeah, and this is with the denial and heartache of someone that is this sick to begin with.  Really bad idea.

When we first realized that dad was this sick, and not likely to get better; we brought up the idea of hospice. And I must admit that my family thought of hospice as a place.  Someplace that dad could go, that would be similar but not a hospital.  Some PLACE where he could get the care he needed to ease his last days.  What we discovered was that the place in hospice is almost always the home.  And home hospice care is limited in scope to providing a small amount of daily assistance, not the round the clock that a truly helpless person needs.  While inpatient hospice certainly exists; it is for an acute transition or respite care (up to 5 days).  It isn't a place where someone can ease away their last few months in care and comfort.  And while medicare language discusses physical therapy in a hospice context.  You are quickly told that this is strictly about safety, how to use a hoyer-lift, pick up falls, etc. and not at all about the comfort or self-care of the sick individual.

And like so much else in healthcare in this country, a dedicated caregiver is assumed.  Someone who can step in and provide the round the clock care needed to send someone, that might otherwise be in intensive care, home.  Even without life-saving intervention, there is still a great deal of comfort care that goes into daily patient care.  And when we were investing nursing homes, we found out that the average patient even at a good home, receives less then 1 hour of attention a day.  That's one hour, to feed, dress, bathe, change clothes/bedding/diapers, dispense medications, move/rotate the patient to prevent bedsores, and provide comfort and companionship to a frequently very confused individual.  In home hospice, we also get about this hour of day from an aide and/or nurse.  And while these have been great, there is still 23 hours where the family is taking care of the patient.  Dad doesn't usually wait for a nurse to fill a diaper, throw up, break into a fever, need feeding/water/blankets moved, etc. etc etc.  Most of this has fallen to my mother.  Who is providing all of this care, while not always sleeping well herself, and DEALING WITH THE FACT THAT HER HUSBAND IS DYING.

I can really sympathize with this husband in ending the pain and suffering for him and his wife.  And I really hate a health care system that can leave someone feeling that it's their only option.

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.

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.