Saturday, February 02, 2008

ok i'm dead. so what? i partook of much wonder and beauty. you should be so lucky!
BH died tonight at 8:40, at home, in peace. His wife and I were at his side.

He wanted me to post his official last words to you.

Like James Tiberius Kirk, he said, "It was fun."

Wednesday, January 23, 2008

wife, i love you.
children, i love you.

Sunday, January 20, 2008

not his fault this time. could not spell 'fbv'(jaw thrust). knew he would do one when getting me up,.

Friday, January 18, 2008


daughter wanted her mom, hectic with caretaking me due to sick caregiver, to hannd hber puzzlbbe pieces. she had only threeb left,then two, thebn ne. sad.

timbe to gebt severe on mr. hyde. not-fire him,, fix himmm. he said theb bell was too loud, took it away. pee was dnribbling on me as hbe held urinal, and i had POS say 'leaking.' he joked 'ygeah, u r taking a lebak.' when told him he spillbed p onn m e. H e s aid 'did i/ ' not 'sorry. ' he must think i'm soffft b/c nice. We shd havde his boss st ernly lecctur... And .

Thursday, January 17, 2008

yesterday i was battered. my wife had an import ant and stressful day pl anned but we h ad no caregiver. so she called an agency to send someone. WE MUST NEZER DO THIS AGAIN. my c aregiver told her how to take care of me. the ne w one began by curliing the kl eenex UP over my nose. could not t ell her nyhthing, she too stupiiid,loud.

Wednesday, January 16, 2008

ok 4 u to s ay fire mr. hyde, but he's PERfect compared to last night's idiot-fool.lll

Tuesday, January 15, 2008

r1thanksthanks for treating me well monday night. it must be hard with so little sleep. i apologize for the time i did ring-flip-flip-correct. sometimes i forget what i rang for, but i will try to make sure not to ring till i remember.

Monday, January 14, 2008

he started out being my best night caregiver. he calls me 'the best in the west' sans irony, and agrees when i say i respect him and would never play games. but once i am helpless in bed, his anger mounts as he accuses me of ringing the bell to toy with him. it frightens me. l wonder if he knows that when he does this, he is acting like the mean rich people told me about. i want to work with him, not ask the agency for someone else.

Sunday, January 13, 2008

tried thhis:

pls come every time i ring, even if u think i am asleep.

]and please no jokes about words i point. just try to help.

it is iimpossible foe to reach all of the card. u may havve to move it to where my fingers are.

at 2:38 he seemed furious with himself for agggreeing to this. at 5:30 i had to pee. he had put the card where it could barely ring the bell. i flailed and it made weak dings. i tried my shriek, but he did not wake. the diaper leaked as per usual.

when he snorted on waking, i shrieked and he got me up. splayed uncomfortably in the wc as he put dry clothes on me, i was gifted with his words:

"you choose this, not me. you want to make it hard, what can i do?"

Saturday, January 12, 2008

my best day- caregiver, the one w ho got the 25 -percennt raise, has since about thhat time,,, develooped abn attachment to the idea that i disrespect him. he will quit after goking home on a visit. but he is also attached to thinking of hims elf as v ery getle.lll

Friday, January 11, 2008

i a m so glad my w ife's and kids'bbbodies do not have A LS......

Thursday, January 10, 2008

i wish i could w alk out there and do s ome parenting.llllll

Wednesday, January 09, 2008

at two she told me she wd get me up to avv oid hving to constnbantly mv me.
she lied to u.

i had several chalvazions surgically remov ed from eyelids in '90s before married. optham dr. said 's crub the hell out of them' with hot wet towel to forfend. it worked. bbut now socrippled i can;'t. the thing on my right lid is likely a chalazion. . I TRUST ONLY U TO SCRUBBB MY LIDS.

thx for fixing kybd tray. it hurts when they try jamit back on when s w iveled out.

very too hard type this . will soon be 'locked in' WRT hands but i hope not blinks.i love you and thank you.

Tuesday, January 08, 2008

if u haveALS and u read this blog, pls comment yiour diagnosis date.
Weblog Commenting and Trackback by