Tuesday, February 27, 2007
Ray is continues to get weaker, as he is refusing to eat and is drinking minimal quantities of fluids. The Hospice folk are
supposed to be here tomorrow, although I have not yet heard from them directly with a time.
Mark Nouillan, who has been at this point himself, says if we can just get him nourished he has hope for recovery. I don't
know if I share his hope, although that does not mean I will not do everything in my power to get him to eat and drink.
The new trick is refusing to take medications. He spits pills out. He says people are trying to kill him. He is calling
out for his family -- his adoptive father, who was a cruel man and who Ray never liked; his brothers, who had best NOT show
up at our house; his mother, who abandoned Ray when he was 4. He doesn't want to stay in bed, but has to be physically moved
to get him from bed to wheel chair. My nerves are frazzled. Jeff's are about the same. The world is on hold.
Pray that whatever God has planned for Ray, it include removal of pain and a peaceful heart.
Give thanks for the good times. Keep praying.
8:03 pm pst
Monday, February 26, 2007
It has been a long a difficult weekend. He wants to get up out of bed, but I cannot move him myself and he cannot help.
His mind is going a million miles an hour. He wants to talk on the telephone, but cannot see to push the buttons, often
cannot hear what you are saying, and can barely make himself understood on the telephone. He is prone to pushing a button
that ends a call in the middle of a conversation -- all unknowingly. Some of you have experienced that already. Hospice
will be here on Wednesday.
He likes visitors. They are a reminder that people still care about him. He will recognize you while you are here, but an
hour after you leave he will ask if you have been there, or who it is that is still in the house. He constantly moans and
groans when awake -- but less so when he has company.
The Vallium and Methodone are blessings to ease his body and his mind. This is hell for him, and heartbreaking for me to
watch. I am constantly in or on the verge of tears.
Last night Jeffrey, in all sincerity, said, "Bonnie, when this is over you can count on me. I will be your other half."
He meant well, but it was all I could do not to laugh. He just doesn't understand the concept of the kind of love that makes
two individuals a single whole. Ray and I have been lucky to have that kind of relationship. Independently we are so-so;
together we can conquor the world!
I have told him that when he is ready to travel we will go home to Hawaii. At first that disturbed him. When he had the
reassurance that we will not go until he is ready, it became OK. He has been telling me for a year that's what I should do,
and finally I believe him. We have also said that we want our cremains scattered at sea off Diamond Head, so that's what
we will do. We will continue to maintain some sort of presence in the Groveland community, but the reality is that I cannot
stay here alone. I would like to have a marker of some sort at the Divide Cemetery, but currently there is no provision for
markers where there is no burial. The Cemetery District Board is working on that problem right now.
We continue to live one day at a time, to give thanks for the friends we have made and the lessons we have learned, and to
pray for God's healing and peace.
Give blood at your nearest blood bank. Someone needs it. Give thanks. Keep praying.
7:11 am pst
Wednesday, February 21, 2007
It has been an incredibly difficult week. It is obvious that even with Jeff here part time I cannot continue to
care for Ray by myself. The Visiting Nurses will be here later today to do an evaluation and make a recommendation.
Long term care is out of the question. If I put him in long term care, he will give up. So we will look at
our other options.
Our hanai daughter, Nancy Ruth, was here yesterday. What a wonderful difference she made! She has been through
this twice now, first with her mother and more recently with her grandmother. She knows all the tricks and has incredible
patience, although (like me) she knows that nursing is NOT her calling. She is also bigger and stronger than I am, and
can move Ray around in the bed and into his wheelchair where I cannot. She also knows the 'administrative' stuff, has
had experience working with hospice in Palo Alto (which may differ from Hospice in Tuolumne County -- don't know yet), and
gave me lots of hints of things to ask for and things to expect. For that I am thankful.
I managed to crash my desktop computer yesterday, meaning that my email list is gone. Yes, the genealogy work is
safely backed up on another computer!! If you would like to maintain personal contact, please send an email with the
word ADDRESS in the subject line -- no additional necessary -- to
tutubonnie@earthlink.net You may be asked to request to be added to the address book. If you have been emailing to
raystvns@jps.net, that address is not affected.
Thank you so much for your prayers and caring. They are still what keep us both going.
Give thanks for life. Keep praying.
9:01 am pst
Friday, February 16, 2007
It has been a horrible week. First, Ray is getting weaker. The catheter is causing no end of trouble. He sees the urologist
today. I am running on adrenalin -- and faith.
Second, I am a user of Mozilla products, which are based on Netscape. I have a couple of online sites which I use regularly
which prefer IE. So ... I installed IE7. And shut down my email system. Finally uninstalled IE7 and Bingo! Back came the
email. Something about a firewall issue, I guess.
Please keep praying. Give thanks we have come this far together.
8:47 am pst
Tuesday, February 13, 2007
After a distressing weekend of trying to get Ray to eat and drink enough to keep himself alive, yesterday morning came with
a vengence. Despite the Vallium, Ray was in deep depression. Turns out that he is trying to take responsibility over a whole
lot of things over which he has no control -- so we need to apply our favorite mental health worker's standard measure: assign
the problem where it belongs. If it is your problem, work on it. If it is NOT your problem, let it go.
The short issue here is that we ended up at 9:30 a.m back in the Emergency Room. His blood levels were in normal ranges.
No infections showed in his blood samples. They started pouring fluids into him. By 2:00 he was well into his second liter
of fluid and still could not give a urine sample. ER Dr. order an in/out catheter to draw the sample. When the catheter
was removed, Ray began to bleed. Badly. Eventually the bleeding slowed to a trickle. The RN expressed concern, not criticizing
the doctor but repeating several times, "The doctor says his platelet count is low and the bleeding will stop. It's
OK for him to go home." He was packed in toweling and an adult diaper and discharged.
By the time we got home, the toweling was soaked. I immediately called back to ER asking at what point I should panic. The
RN explained that this was a reasonably normal reaction to the procedure, to clean him up and watch the bleeding. Meanwhile
MAKE him drink 32 oz. of water in no less than 2 hours to give him something to make urine. He HAD to pass urine to flush
the urethra and assure that it was not blocked by clotted blood. Ray dutifully drank the 32 oz. of water, but still could
pass no urine. I called ER again and was told that he had to come in and have another catheter placed. So back to the hospital
we went.
When the new catheter finally got into the bladder -- after being forced through a blood clot that had already blocked the
system -- the urine began to flow clear and normal. It was painful, but Ray was OK. But it was 1:00 before we got home.
Today it is back to the old routine. Lots of fluids. No caffine. Eat something. Anything. He has an excuse to stay in
bed -- rest, no heavy exercise are orders for the day.
We also filed an application today for State Disability coverage. I don't know what will happen, but at least the application
is filed. Our Primary Care physician said, "Of COURSE he is disable. Why didn't I get these papers 6 mos ago?"
Because the thought never occurred to me.
Give thanks that he was 'only' dehydrated. This is fixable. Keep praying!
6:46 am pst
Thursday, February 8, 2007
I have been hearing for a long time about a film on global warming narrated by Al Gore. Then the jokes started that Al Gore
had a sense of humor after all, and was being nominated for an Academy Award. THEN ... he got the nomination. So I had to
find out what this was all about. Ray and I watched the film last night. Well, I watched it. Ray slept through most of
it. But that's what Ray is doing these days.
The film is called "An Inconvenient Truth". It is available on DVD (we borrowed it from Netflix) and is an absolute
MUST SEE for everyone on the planet. The message must be heard. It is too important to all of us. The scientific evidence
the presentation is built on is sound and compelling. The signs of its accuracy are all around us.
Give thanks for life! Keep praying!
3:04 pm pst
Tuesday, February 6, 2007
Yes, this morning was pretty rocky. But by this afternoon it became obvious that Ray is trying again. I'm not sure that
his food intake got as high as 1000 calories today, but he has eaten more than I have seen him eat in several days. His water
intake is down a little, but should pick up tonight. His diet also has better nutritional quality behind it tjan biscuits-and-gravy
-- although the gravy certainly adds calories!
I am demanding that he do the exercises that the physical therapist left for him -- no more excuses, and no more Mrs. Nice
Wife. So we have two days of exercises behind him. Not the best performance in town, but better than nothing.
So we're back to very small steps, but they are steps upward, not the downward slide that I have been watching for several
days.
Thanks be to God! Keep praying!!!!
10:06 pm pst
I am afraid. For the first time yesterday Ray said, "You have a husband who is dying." It was as if, with that
statement, he is excusing all his exasperating behavior over the last three months.
This has been a difficult week with hard-to-take news. We received word that a very special friend had a small stroke recently.
Tests show that he has a blockage in one of the veins (or is it an artery?) in his neck -- so thoroughly blocked that it
cannot be surgically repaired. The corresponding vein on the other side of the neck is still clear, but he has to be extraordinarily
careful with his medications, lifestyle, etc. that vein does not block. If he does not follow his doctors' instructions ....
Yesterday we received word that another local friend passed away. Pete, a man's man with a wicked sense of humor, had a brain
tumor that robbed him of most of his humanity. He had been ill nearly as long as Ray, and for most of that time he has been
unable to speak clearly. It many ways it is a blessing for Pete. But not for his wife, and not for Ray.
Last Friday's newspaper carried the obituary of another casual local friend, mother of a contemporary. Her son, who worked
at Tenaya School, died at least 10 years ago -- I seem to remember that he was a cancer patient. Now his mother, whom Ray
has watched fight her own battle in the Infusion Center as he was receiving his own treatments, is gone as well.
So Ray is focusing on death and dying. He needs distractions. He needs to eat. He needs to get out and move.
Give thanks that he is still among the living. Please keep praying -- for both of us.
10:03 am pst