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.

Welcome to the Future

It's not everyday that you get blown away by something that screams "Welcome to the Future", but seeing this on Kickstarter today just blew my mind:

http://www.kickstarter.com/projects/1351910088/3doodler-the-worlds-first-3d-printing-pen

This is literally letting someone draw in the air and have their doodles extruded as 3D plastic.  

Now my free-form art would probably look a lot like what is pictured here, but for an artist to be able to sketch off the paper is just insane.  Not to mention creating "sketches" of graphs or molecules or even a face.  

Since I work in a museum, we are always trying to have that wow moment.  That time when you push a kid to see into the future and see themselves doing the impossible.  That moment that will bring teachers, parents, kids etc back.  And once this tool becomes available, I can just picture that spark in a kids eyes when they can sign there name in mid-air and take it home with them.  That's a wow.  And so is this project.

And I'm obviously not the only one to think so.  Day 1 of their kickstarter, their 30 day goal was $30,000.  In the last 20 minutes they've gone from $960K to $974K.  They need to come up with some multi-million dollar stretch goals.  Can I suggest a museum-ready super-durable version :)

Evolution and Religion

As known science geek in my circle of friends, I'll occasionally be asked my opinion on something science-y.  This is my response to someone asking about a creationist curriculum to teach high school science:

Let me start by saying that while I believe Heavenly Father created the Earth and all things in it, I do NOT believe in a 6000 year old earth.

 I've seen how God can span many orders of magnitude from atoms at 10^-12 meters to galaxies at 10^12 meters and don't see why we need to put him in the human mindset that can't handle more then about 1000 without switching reference frames.

 My belief is that like a good agile programmer, God created life in steps and reused his code (DNA and genes) as he perfected each of his creations. The spirit of man is from the pre-existent spirits and it is this breath of life given to the earliest human that turned it from a walking ape into a true human being. Thus I can NOT recommend a science series that sticks to a 6000 year old earth and ignores even the basics of what sexual reproduction does for the diversity of species (one small example from the first chapter of the Bio book). The experiments and language look good, but with such a restrictive lens to bias the writing, it won't provide an understanding to go to college or understand the world around us as described in the scientific literature.

 Here's an overview of the First Presidency's statements about evolution: http://biology.byu.edu/DepartmentInfo/EvolutionandtheOriginofMan.aspx

And this especially captures my views:

ENCYCLOPEDIA OF MORMONISM

EVOLUTION

The position of the Church on the origin of man was published by the First Presidency in 1909 and stated again by a different First Presidency in 1925:

The Church of Jesus Christ of Latter-day Saints, basing its belief on divine revelation, ancient and modern, declares man to be the direct and lineal offspring of Deity.... Man is the child of God, formed in the divine image and endowed with divine attributes (see Appendix, "Doctrinal Expositions of the First Presidency").

The scriptures tell why man was created, but they do not tell how, though the Lord has promised that he will tell that when he comes again (D&C 101:32-33). In 1931, when there was intense discussion on the issue of organic evolution, the First Presidency of the Church, then consisting of Presidents Heber J. Grant, Anthony W. Ivins, and Charles W. Nibley, addressed all of the General Authorities of the Church on the matter, and concluded,

Upon the fundamental doctrines of the Church we are all agreed. Our mission is to bear the message of the restored gospel to the world. Leave geology, biology, archaeology, and anthropology, no one of which has to do with the salvation of the soul of mankind, to scientific research, while we magnify our calling in the realm of the Church....

Upon one thing we should all be able to agree, namely, that Presidents Joseph F. Smith, John R. Winder, and Anthon H. Lund were right when they said: "Adam is the primal parent of our race" [First Presidency Minutes, April 7, 1931].

WILLIAM E. EVENSON

(Encyclopedia of Mormonism, Vol.2)

Reprinted with permission of Macmillan Publishing Company from Encyclopedia of Mormonism, edited by Daniel H. Ludlow. Volume 2, page 478. Copyright 1992 by Macmillan Publishing Company, a division of Macmillan, Inc.

Uncanny Valley and Bodies Revealed

I've had a lot of parents worried about how their children will react to the corpses in Bodies Revealed.  And a lot of adults were creeped out by the idea of what they were looking at.  But in the 5 months that I've been facilitating Bodies Revealed, I've only had a small handful of visitors freak out and have to leave.  

So in this society where death is so hidden from the average person, and most of my visitors had probably never seen a corpse that hadn't been embalmed and prepared, why didn't they freak out? (Well ok, these bodies were embalmed and prepared too, but they definitely don't look like they are sleeping).

I think it has a lot to do with the concept of the uncanny valley that is usually discussed in animation and robotics.  Basically humans will anthropomorphize almost anything and except a lot of very non-human faces and read them easily.  But if a face starts to look TOO real we will suddenly and unconciously become a very harsh critic of what we are seeing.

So as an example think of a very exaggerated feature animation like Japanese Anime or an emotion chart:

The crazy eyes don't strike us as creepy, and we have very little trouble reading the emotions in the exaggeration. 

Yet overly realistic baby dolls, robots, masks or animation can just seem odd or somehow threatening:

We've been primed by evolution to reject signs of disease and read others emotions.  So when the emotions don't read correctly, all of our warning bells go off that this person is dangerous, or lying or otherwise just wrong.  This is the same kind of feeling a lot of people get with clowns, mimes, and heavily overdone make-up.  We can see the face underneath, but the emotions and contrast are all wrong.

If we were to see just the skin on the body, we would probably all be freaking out.  Bodies not moving is a classic evolutionary get out of town warning.  He's dead, whatever killed him is probably nearby.  But by changing the appearance of the body and especially the face by removing the skin and presenting muscle and bone there is enough unreality to create distance.  And then if you make another step out to the circulatory system, we can really appreciate the intricacy without tripping up our inner sense of creepiness.  And we have thus distanced ourselves from the humanity of the donors to study and appreciate the amazing structures of the body.

So Bodies Revealed did it right, keeping enough features to remind us of the humanity of the donors, but changing enough of the facial features to leave us out of the uncanny valley discomfort zone.  It's a good reminder that studying sciences and psychology across disciplines can provide lessons in unexpected places.  

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.

Educating Visitors and Myself in Bodies Revealed

For the first time in a long while, I can truly say that I love my job.  Like any job there are downsides, but getting to engage guests in conversations about our exhibits and science in general has brought out wonderful new parts of my personality.  In starting this blog, I'm hoping to expand on interesting conversations that start in the museum and engage the cyber-world as well.

Since October, DaVinci Science Center has been hosting Bodies Revealed. (See http://body.discoverlehighvalley.com/bodies-revealed/ and http://www.bodiesrevealed.com/ for an official explanation of the exhibit, the opinions on this blog are my own and not those of DaVinci or Premier or anyone else).  Since I work assisting guests and school groups at DSC, I have spend a LOT of time in this exhibit in the last few months.  The very same months that Dad has moved from a rehab hospital to a nursing facility to home hospice.

When I first thought about this exhibit coming with Dad in his current state, I didn't think I'd be able to deal with it.  How could I work with corpses everyday when my dad was dying?  But when the exhibit was setting up, I was in the closed museum for training and got to spend a little time with the bodies as they were in transit, and felt like I could handle it.  Then an exhibit went up that featured the Thalamus and the facial nerves.  This is the part of the brain that was mostly removed on his right side and led to the hemi-paralysis and other symptoms.  Right here I was looking at the part of a brain that was causing so much trouble.  And it was like everything clicked for me.  Seeing this in 3D, right there was so different from looking at drawings or following a doctors hand waving.  It was looking at me, and I stared at it for a few minutes.  I went back and looked at it over and over again.  And by understanding where it was, seeing how deep they were working when they removed that cancer.  It really brought home what a tremendous surgery this was to even attempt.  And why damage was so hard to overcome.  Looking at the neighboring full body that is cut away to reveal half the brain and cut down to the spinal cord, showed me how protected this part of the brain was.  

Suddenly, I could understand what happened to Dad in a whole new way.  And maybe turn around some of the tragedy of the situation by being able to talk about the brain from a much different perspective.  Now I have probably shared too much information with you here on my blog, and with some of the visitors.  But I've been able to talk about the thalamus as the central switchboard, and explain how this lets you integrate the information coming in from your senses and pass information on movement back out to the body.  And I've had a lot of mini therapy sessions as I've talked out various parts of my caregiving life as I spoke with strangers about their stories.

And now if we zoom out, all of my struggles as a caregiver have given me new appreciation of all of the bodies in our exhibit.  And it's also given me a lot of empathy for all of the visitors who want to share their own struggles.  One of the first things many visitors focus on is the organs or bones that have caused them trouble in their life.  I've heard stories of overcoming many types of cancer, broken bones, various surgeries and chronic pain and I've been able to understand their struggles and connect on an emotional level.  

For someone who lives somewhere on the range of high functioning Autism to Just Plain Geek, emotions are not something I'm good at.  I'm not good at recognizing them, processing them, or conversing about them.  I like facts and rules.  But Bodies Revealed has given me a space to talk about this miraculous thing that we all have called a human body.  To marvel at the intricacies while I discuss the wonders at even smaller levels.  And to make conversations about what goes wrong, a normal part of the exhibit experience.  And while I will NEVER be a doctor, it's made me a better caregiver.  And if even a small fraction of those that go through this exhibit take better care of their own bodies and their loved ones then the exhibit is worth it.  And if even a few people can better understand the health troubles that have occurred in the past, or will occur in their future then it's a wonderful thing.

We can't all take a gross anatomy class with a human body dissection, and many of us don't want to face dissecting even a frog or earthworm, let alone a cat.  And a cat isn't a much better model of a human being then an oversimplified plastic model.  And while computer simulations of anatomy are getting MUCH better, then are still 2D representations of the complex body.  The reality is so much deeper and more complex, that I'm deeply grateful to those that donated their bodies and those that did the work to make them so approachable for so many.  

So if you live near Allentown, PA; come see Bodies Revealed before it takes off to Davenport, Iowa in a few weeks.  But if you do, try not to come on a Saturday or Sunday afternoon unless you really like large crowds.  Insider tip is weekday afternoons, or as early as possible on the weekend.