[Granville-Hough] 22 Feb 2009 - Terminal Experience

[Trustees for Granville W. Hough]

Date: Sun, 22 Feb 2009 08:39:56 -0800
From: Granville W Hough <gwhough at oakapple.net>
Subject: Terminal Experience - 22 Feb 2009

    Most Alzheimer's patients die from pneumonia, and that was the usual 
diagnosis before Alzheimer's disease was fully recognized.  What happens 
is that the brain deteriorates backwards through its evolutionary 
development, and the last thing to go is the ability to swallow.  When 
that happens, the patient chokes and gets food particles into the 
windpipe and lungs.  The symptoms are like those of pneumonia and that 
is what shows on historical death certificates.  That is not what 
happened in my wife Carol's case, so it may be of interest to some of 
you to learn of her terminal experience.  I related this experience to 
the Alzheimer's Support Group in September 2003.  Everyone there had 
someone in the facility.  


        The Terminal Experience

  In our May or June (2003)meeting (Support Group for Alzheimer's
patients at Aliso Laguna Village), I posed the question of how could we, 
as supporting family members, prepare for the inevitable loss of our 
loved ones with AlzheimerÂ's disease.  I believe Connie said: ÂThat 
would be hard to generalize, as it comes in so many different ways.Â

  So my remarks about my wife Carol Hough are specific to her case; but
like all old professors, good and bad, I will have a handout at the end
of my discussion with some general conclusions and suggestions for
others.

  Carol's basic facts were these.  She lived on the third floor (at
Aliso Laguna Village), was mobile,
and could feed herself.  She could not dress herself, take showers, or
handle bathroom functions without help.  We were able to go to church
each Sunday.  She could recognize me and her children, but she was never
sure about our grandchildren.  They had grown up.

  On 3 August (2003) we went to church but had to leave early because
she was
having abdominal pains.  When we got back to her room, I told the
caretakers she was likely constipated.  That afternoon my son David
arrived from San Jose to help me through the implanting of a pacemaker
at Saddleback Hospital.  ThatÂ's normally a 3 day stay at the hospital,
but I have a mechanical aortic heart valve which is very sensitive to
the level of my blood coagulant.  I had to get off one anti-coagulant,
coumadin, and get on another, heperin, so my blood would clot during the
pacemaker implant.   It took three days to get to a safe level for
operation.  The fourth day the implant was made, and then I had to get
back on coumadin at a safe level so I could go home.  That took three
additional days.  So I was confined to Saddleback Hospital for
seven days when Carol'Âs problems developed.

  David was visiting Carol daily and seeing her condition worsen.  By
Wednesday she was vomiting, and she was getting worse on Thursday.
Gemma, the nurse here, called CarolÂ's doctor and described her
symptoms.  Dr. Gerhard, Carol'Âs doctor, stated she should be taken to
Mission Hospital Emergency Room for evaluation and David took her, still
hoping it was just a matter which could be corrected with an enema or
similar procedure.

  Carol was able to see the doctor on duty who studied her condition and
took an x-ray of her abdomen.  What he could identify from the x-ray was
a massive entanglement of intestines and complete blockage of flow.  He
immediately ordered a barium x-ray and went to see David.  He said,
ÂYour mother has a critical blockage of the intestines.  To save her
life, I must operate tonight or before morning.  IÂ'm doing a barium
x-ray to be sure of this diagnosis.  The best I can promise from this
operation is that she will have a colostomy the rest of her life.  You
know she is an Alzheimer'Âs patient already.   Should I operate or not?
I will check the barium x-ray and be back for an answer in a few
minutes.Â

  David was 54 years old and a very responsible person, he was the next
one on the power of attorney to make the decision, and that power of
attorney was on file at Mission Hospital because I had used it in 1997
in deciding that Carol should have brain surgery, lest she die from
stroke damage to the brain.  He could have made the decision alone, but
he got me on the phone at 12:30 Friday morning and explained the
situation.  I could not visualize how Carol could handle a colostomy in
addition to advancing Alzheimer'Âs problems.  What quality of life would
she have?

I was groggy from pain killer but I managed to say:  ÂCarol and I agreed
in 1992 when we prepared the medical Power of Attorney for Health
Decisions that neither of us wanted any heroic measures merely to
prolong our lives.  She was in her right mind, had had no strokes.  We
must honor that, and let her go.  Both David and I told the doctor, Âno
operation.  Dr. Gerhard later called me and said, ÂYou made the right
choice for CarolÂ's sake.Â

Carol was placed in an emergency or critical case room, hooked up with
ivÂs, life sustaining fluids, and oxygen, and was given pain killer and
anxiety medicines, but she had to be restrained or tied down so she
would not rip out the tubes and ivÂs.
Her pain increased daily and she was mostly incoherent.  She recognized
David through Sunday, and she seemed to recognize both of us on Sunday,
Monday, and Tuesday.

  Now, in retrospect, we can ask:  When should we have begun hospice
care?  Carol had five days of pain and suffering after the Âno
operation decision.  The first day or two was acceptable because of the
remote possibility that her intestines might unwind naturally.  Such
things had happened in medical history.  Morphine might block such
natural process.  The other days were the result of our family
uncertainty.

  When I first saw Carol late Sunday, I knew something had to be done.  I
went to the nurse station.  Our conversation went like this:  ÂMy wife
is not an emergency case.  She is a terminal case.  Can we remove her to
a terminal ward?  nurse: ÂIÂm sorry, we have no terminal ward. ÂWhat
happens to terminal cases? nurse: ÂThey are generally moved to other
environments or settings. ÂWhat settings?  nurse: ÂHospice or
specialist hospitals.  ÂHow do I arrange that? nurse: ÂYou have to
work with Discharge Planning.  They will be here tomorrow.Â

  When tomorrow (Monday) finally came, I went to Discharge Planning while
David found a parking space, but the Discharge Planner was on vacation.
I asked for the next in charge, the assistant.  She was absent, Âon the
wards.  I said, ÂIÂll go find her Âon the wards.  About the second
ward I got to, an anxious lady came out from the nurse station and
apologized that the Discharge Planner who normally arranged Hospice Care
was absent.  She assured me she would work as fast as she could to
arrange it.  With that I had to go back to my doctor at Saddleback to
check my implant and the coumadin (anti-coagulant) level.  Of course, I
could not drive.

  When troubles come, they come in bushels.  The next morning (Tuesday)
David had arranged to be at our apartment so a repairman could replace
the windshield on his car.  He had parked his car in the visitor space
in front of our apartment, and he drove my car which was more
comfortable for two people.  On Saturday, he noted the windshield on
his car had been smashed on the right side.  In 28 years, I had never
heard of anyone getting their windshield smashed in Leisure World.  So
Tuesday morning we were tied down until the repairman came to replace
his windshield.  (We later found that a rotary ditch digger had been
operating on the level above the parking space on Thursday and Friday
and had apparently snatched up a rock which landed on the windshield 
below.  The ditch digger operator probably never saw a thing.)

  Then, Tuesday morning, nurse Linda Smith from Heartland Hospice called
and explained she was the evaluator for placing Carol in a hospice, that
there were papers to sign, and other arrangements to be made.  I asked
her if she could come by our apartment with the papers as we were
immobilized.   She indeed did this, we got the papers signed, and she
said she would evaluate Carol'Âs condition and be ready by the time we
could eat lunch and get to the hospital.  We told her our preference
would be for Carol to go back to Aliso Laguna Village if possible.

  By the time we ate lunch and got to the hospital, nurse Linda had made
her evaluation, had determined tha Aliso Laguna Village could provide
the care needed, had ordered an ambulance, and nurses had begun removing
the tubes and ivÂs which were merely prolonging Carol'Âs pain, but also
assuring she would not die in Mission Viejo hospital.

  The ambulance showed up and I rode with Carol back to her own room at
Aliso Laguna Village.  She knew she was back in her own room.  She even
tried to sing, but was generally delirious.  She got her first dose of
morphine at 4:00 pm on Tuesday.  David and I stayed with her while Nurse
Linda completed arrangements with Aliso Laguna Village.  At 5:15 Carol
dropped off to sleep or into a coma from which she never recovered.  She
seemed to have no pain, and the Hospice nurses and Aliso Laguna Village
caretakers carefully changed her position from one side to another so
she would not develop sore places.  She received a small dose of
morphine every two hours.  Hospice nurses were with her all the time.
Aliso Laguna Village caretakers who had known her came by and talked
gently to her and in effect said goodby.

  Our family members  were also there much of the time.  We did what we
thought would please Carol.  The Hospice nurse on Sunday evening told us
she would call when the time was near.  About 11:15 we received her call
and we got to CarolÂs room about 11:35.  Bernadette, the Director here,
and the Hospice nurse were there and left us with Carol.  My son David
and I blessed her and told her it was all right.  Her breathing
gradually slowed and her last breath came at 11:44, 17 Aug 2003.  We 
stayed until the paramedics came to confirm death, the CoronerÂs office 
was notified, and all the paper work was done.  The McCormick Mortuary 
representative very carefully and respectfully removed Carol's body 
downstairs to his ambulance.   The ambulance, the Hospice nurse, David 
and I, then all departed.

  This is how we lived through Carol's Terminal Experience.