An e-mail excerpt:
An e-mail excerpt:
Hi folks,
Well, I thought my communication was getting slow and so it has. It really has been very quiet with Robin sleeping most of the daytime.
We do continue to see nearly daily signs of Robin's disease progression. She's pretty much stopped asking for food, though today she asked for a glass of milk at around 11pm. She's also drinking a lot less water. She continues to lose weight and her skin is sagging on her bones (like a loss of skin tone). I expect this is from her circulation decreasing. Today when she got up to go to the bathroom her legs were beginning to give out on her. I think she found this particularly unsettling. That may be her last trip walking to the bathroom.
After she got back in bed she was sad and cried a little and starting asking questions. Dad, Kim and I took turns sitting with her. She asked a lot of questions about what happens next, and how does she know what to do next.
She just about never thinks we're at home anymore. She's also having difficulty interpreting sounds. She was talking all evening about dogs growling and it finally occurred to us that it was her stomach growling, so we gave her some liquid food supplement through the stomach tube to help with that.
For several days now she has had disorientation similar to what is written about in the booklet "Gone from my sight". The booklet also describes changes in blood pressure and temperature during the last week or two. The nurse is now checking her blood pressure at every visit and so far it's normal. Robin's temperature fluctuates during the day. Her head and limbs can feel very warm one minute and then soon after they can feel very cool to the touch.
The hospice nurse usually starts talking about what signs to expect next. During the last couple visits the nurse has been mentioning things that will happen on the last day, and today she started going into more detail.
The hospice folks all say they like visiting our house. They say we all seem so (relatively) relaxed and peaceful.
Me
posted by Building_in_NY @ 11:45 PM
4 Comments:
I have been following the weblog since Phil and I found out in December and have read all of the earlier entries. You both are amazing and an inspiration. Thank you for sharing this most difficult journey.
When I was in junior high, we read "Death Be Not Proud" by John Gunther in English. The book recounts the true story of his teenage son's (John Gunther, Jr.) struggle to overcome a brain tumor and his ultimate death at seventeen in 1947. It is a moving account of the family's struggle made all the more poignant because my English teacher, Miss Bednaz, had a brain tumor at the time. She was in her twenties and engaged. Like John, She also lost her battle.
The memoir takes it's name from the first few words of Holy Sonnet 10 by John Donne - "Death, Be Not Proud" - and is included at the beginning of the book. The poem diminishes the power of death, claiming it to be a feeble enemy. It reads as follows:
Death, be not proud, though some have called thee
Mighty and dreadful, for thou art not so;
For those whom thou think'st thou dost overthrow,
Die not, poor Death, nor yet canst thou kill me.
From rest and sleep, which but thy pictures be,
Much pleasure; then from thee much more must flow,
And soonest our best men with thee do go,
Rest of their bones, and soul's delivery.
Thou art slave to fate, chance, kings, and desperate men,
And dost with poison, war, and sickness dwell;
And poppy or charms can make us sleep as well
And better than thy stroke; why swell'st thou then?
One short sleep past, we wake eternally,
And death shall be no more; Death, thou shalt die.
We pray each day for healing and freedom from pain for Robin and continued strength, faith, comfort and peace for you both. May God bless and guide you.
Thinking of you...Janet Brzezinski 2/8/07
Robin & Greg:
Not a day goes by that I don't think of you guys....You two have more strength and support behind you than you'll ever know. We are all very sad for you and if we could carry the burden that has befallen upon you, we would.
Robin, Rest in peace my dear cousin - you will be missed each and every day. Although you will be gone from our sight - rest in peace knowing that Gram Clare, Grampa Harry, Uncle Billy, Polly, Tony, Mike..... are all watching and waiting on the other shore "ready to take up the glad shout:
"HERE SHE COMES!""
Sending you lots of love for your journey ~
xoxo
(Cousin) Jennifer
I have been reading your blog since we first heard about it. I have been praying for you daily and hoping that both of you and your wonderful support can feel our prayers and thoughts in your hearts. We hope that as each day comes you take it in and know that many many people are thinking of you and hoping their thoughts can somehow make this part of the journey as peaceful as possible.
Your in our thoughts and prayers daily.
The Duso's
(Upper 15)
Robin & Greg - Please know we are all thinking about you. I've been following the blog most every day. Greg, please do not hesitate to call me at home or work if there is anything at all you need, or if you'd just like to talk.
Thanks,
John D.
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