[Nfbc-info] Fw: Later Oct. update, Ed died

[Ken Volonte]

Hi all.  This is an account of our friend Ed Eames' passing from Toni.  I 
shall remember him in gentle times.  Ken
----- Original Message ----- 
From: <jeannemarie at jeanne-mariemoore.com>
To: "Ken Volonte" <kenvolonte at comcast.net>
Sent: Monday, October 26, 2009 6:11 PM
Subject: FW: Later Oct. update, Ed died


Hi Ken,

Wow this is very touching and hard to read and I'm glad I did.

j-m.

-----Original Message-----
From: Ed and Toni Eames [mailto:eeames at csufresno.edu]
Sent: Sunday, October 25, 2009 8:52 PM
To: ed and toni eames
Subject: Later Oct. update, Ed died

Oct. 25 2009 update

Hi all,

Ed did not go to rehab as planned on Oct. 16.  The doctors could not
control his fluctuating high white count, so he stayed at St. Agnes
until he could build strength and endurance.  The first stroke hit on
Oct. 9, and Ed made slow progress during the next few days.  On
Tuesday, the 13, he had a sleepy day, and I was scared.  But on
Wednesday, he rallied and grew stronger and stronger.

The first step in physical therapy was getting Ed to sit up in a
stretcher chair.   This is a great device where the patient is rolled
from bed onto a stretcher, strapped in for safety, then gradually
raised into a sitting position.  The lift  Ambulation Team is made up
of very muscular men to help with transfers from bed to chair, and
they were extremely nurturent guys.  Once in the stretcher chair, Ed
could be fed his thickened diet.  He never complained about the food
and continually practiced the swallowing techniques recommended by
the speech therapist.  Actually, this swallowing technique is good
for those of us who eat too fast.  Each time you swallow a bite of
food, take time to do another swallow with an empty mouth.  Here's
another exercise:  hold the tip of your tongue between your teeth,
keep your chin down and swallow.  If you tackle that, put your tongue
further out between your teeth and swallow.  These exercises were to
enable Ed to eat regular food.  As a food lover, Ed obsessed about
making progress until he could eat a hamburger and drink water and a beer!

When Ed was diagnosed with diabetes several years ago, we had many
battles about his not walking around the house barefooted.  When he
received a pair of fleece-lined slippers from Eve Hoopes for the
holidays in 2006, he diligently wore them.  During his hospital stay,
he obsessed about having the slippers handy.  In his mind, they
signified walking again.  When the LAT guys helped him sit in the
stretcher chair and later a regular chair, he insisted on wearing his
slippers rather than the hospital socks.

Ed became a favorite among staff.  He always treated them with
courtesy, letting them know how much he appreciated their
assistance.  As his speech improved, he chatted with everyone who
came into his room.  He appreciated the many visitors and I needed
the distraction of phone calls and friends.

On the 18th puppy raiser Mary Flynn took Keebler and Latrell to her
home for a run in her yard.  Then Mary and her daughter Brenna took
the Goldens for a long walk.  It was a wonderful break from the dogs
being cooped up in the hospital room.  Earlier in the week, former
puppy raisers Anita and son Eric took the fur kids on a similar outing.

In some ways, Ed was charmingly child-like during this first
week.  He greeted everyone with joy, and practiced leg lifts as
prescribed by the physical therapist, arm stretches advised by the
occupational therapist and swallowing.  His motivation to get well
and come home was over the chart.  We both took joy and encouragement
with every success, no matter how small.
My friend Richard Stone suggested I write down my fears, and the list
got pretty long.  Would Ed have significant disabilities requiring us
to move from our two storey town house?  With a left side weakness,
would he be able to work Latrell, or would Latrell need to be trained
on the right? With my spinal stenosis, would I have the physical
strength to assist Ed?  The list is a lot longer, but I didn't allow
myself to prepare for the worst!

When I arrived with my two precious guides on Saturday, the 17th, Ed
was sitting in a regular chair chatting with the nurse' aid.  After
regaling his morning visitors, he got tired and was put back in
bed.  He hadn't eaten much of his lunch and had already been given an
insulin shot.  His sleep was restless and it turned out he had a
hypoglycemic episode.  After being given sugar by the nurse, he came
out of his fog with a almost manic demeanor.  Dr. Heller, the
hospitalist, told Ed rehab was scheduled for Monday.  Ed was ecstatic
and chatted nonstop to the doctor, praising St. Agnes' open
acceptance of our guide dogs, puppy raisers and therapy dogs.  He
captured the doctor's interest with reminiscences of hospital access
denials satisfactorily solved through the intervention of
IAADP.  Ed's speech was clear and his cognition perfect.  He was so
wound up, he didn't leave room for anyone else to speak.  When friend
and reader Stephanie Stanley tried to read e-mails to Ed, he kept
interrupting with stories and comments.  When I left him, I finally
let myself get truly hopeful that things would work out!

Sunday morning, the phone rang and I thought it was Ed calling with
the assistance of the nurse' aid.  He had done that for the past few
days.  Having left on such a high, I was not prepared for the news Ed
was now in a coma.  The staff found him in this condition when they
were scheduled to turn him.  My life, my hopes, my dreams and my
partnership were destroyed in a flash.

Extensive tests, CT scans and EEGs showed significant swelling of the
brain and a second, more extensive stroke was suspected.  When I was
told, Ed would be nonfunctioning if he came out of the coma, I made
the awful decision to discontinue all treatments.  If he survived, he
would have no recognition his left side existed, making walking
impossible.  He would have no speech and be fed through a feeding
tube.  He would live the rest of his life in a nursing home.  Ed and
I had health directives, and this was not a life Ed would have wanted.

For four days, phenomenal friends kept vigil with me hoping
circumstances would change.  I always thought comas were quiet, but
Ed thrashed and moaned and the hours I spent with him were
torture.  I talked to him, touched him and cried with each
nonresponsive moment.  Latrell put paws on the bed, frantically
licked Ed's hand and wagged his Golden joy in seeing his partner
again.  No miracles happened and Ed was transported by ambulance to
the Nancy Hinds Hospice home on Thursday, the 22nd.

Ed was so respected and like by the St. Agnes staff that many nurses
and aids cried with me when they realized his goal of rehab and home
were not to be.  He was always so engaging and gave thanks for each
bath, feeding, transfer, antibiotic infusion, taking of vital signs,
cleaning him up, and whatever other intervention was needed.  One aid
said she looked forward to coming to work knowing her day would be
filled with assisting Ed and being welcomed by his big smile.
It was torture bringing home the suitcase I packed in readiness for
transfer to the rehab center.  Bringing those slippers home knowing
Ed would never wear them again was the hardest thing.  How do I
reconstruct my life without Ed?  How do I become half of a  team?

At first I thought about bringing Ed home with home-based hospice
care, but since he would not know he was home and managing a crew of
strangers in my house with the dogs and cats, seemed illogical.  The
Nancy Hinds Home takes six patients at a time in a home-like
residence.  Registered nurses are working around the clock and pain
management is overseen by doctors.

When Linda Haymond drove me to the home, I noted there were no
sidewalks, and commented Ed would not be happy, if only he knew.  The
installation of sidewalks in new developments and throughout Fresno
was a big advocacy goal for Ed  He is being given large doses of
morphine and adavan to quiet his bodily agitation.  The home is pet
friendly, so Latrell and Keebler are most welcome.  I was invited to
let the dogs romp in the huge fenced yard.  Little angelic-looking
Keebler took advantage of the opportunity to dive into a small
fountain and spread mud all over her coat!  A good toweling off made
her presentable for lunch in an Indian restaurant.

As a young anthropologist, Ed spent three years doing research in
India, fortunately long before I met him.  He loves Indian food and
has taught me to love it, too.  It was the beginning of many
experiences and meals I will no longer be sharing with him.

Linda Haymond, Janet Moore, Beth Shea  and Paul Kwiatkowski have held
me up throughout this ordeal with their almost every day visits and
vigils.  Dozens of other friends and relatives have visited, phoned,
sent cards and e-mailed.  Debbie Prieto has spent several nights with
me and comes in the morning after her walk to share breakfast with
me.  One positive of this tragedy is that I have lost my appetite and
have lost 10 pounds.

Thankfully, the hospice has been able to calm Ed's agitation and it
is just a matter of waiting for his body to give up and end the
journey.  The crazy thing is that his heart is strong, but his brain
is gone!  Some people believe coma patients can hear, so we all talk
to him and tell him he can let go.

My beloved husband and partner slipped into a quiet death on the
morning of Oct. 25.  To continue his giving back to society, his body
was donated to Western University Medical School in Pomona, CA.

I plan to keep Latrell.  He is my connection to Ed.  When Ed's dog
Echo retired, Eleanor Marugo made a lovely vest reading retired guide
dog.  We took Echo to meetings and restaurants.  When I travel again,
my friend Sheila Cary has offered to take Latrell and bring him to
work, so he isn't alone during the day.  Keebler is very attached to
Latrell and would be very lonely without him.  He is eight and too
old to retrain with another handler.  I love this goofy canine and
don't anticipate a problem keeping him.

I hope you will honor Ed's life and works by supporting the
organizations he most loved.  Donations to IAADP can be made at
www.iaadp.org or phoning Newsreel for a credit card donation at
614-469-0700.  Checks to these organizations can also be sent to me
at 3376 North Wishon, Fresno, CA 93704.

A memorial service will be held in early December.  I will feature
the many plaques honoring his achievements.  I also want to assemble
a book of e-mail remembrances.  Please write your special thoughts,
fun stories and comments about what Ed has personally meant to you
and to the greater community.  Please put memories of Ed in the
subject line and send it to me at eeames at csufresno.edu.

I cannot emphasize enough how important you all were in supporting me
through this tragedy.  It kept me going and I'll need much more in
the months to come.  Thanks for your love, your prayers and your many
hours of hand-holding and hugs in the hospital and hospice home.

Toni and Furries