[Nfbf-l] Ed Eames Dies Sunday!

[REPCODDS at aol.com]

Below is an email from Toni Eames about  Ed Eames last days. Ed was  
Heavily involved  with IAADP and was in the Federation for many  years.
Dwight
 

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