[nagdu] Later Oct. update, Ed died

[Ed and Toni Eames]

>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
>
>