on my mind, no place else i can post it

I am on and off suicidal.

My suicidal feelings are sometimes more serious, sometimes less.

Sometimes I feel great, sometimes, skull and chest and body crushingly horrible.

I am getting help, from multiple venues (psychologist, psychiatrist, even hormones checked out, starting exercise, new career, new boyfriend)

I will probably post more than once.

But for now, I am going to post what has been on my mind lately, that adds to my stress, that makes me so tired of thinking, and trying and just being alive.

On June 26th, 2011, my dad died.

He was sick for some time first. He had a pneumonia, because he was having a harder and harder time eating, and was starting to aspirate food.  One weekend my mom was feeling certain he might go soon. Of all people, even more than the hospice staff, she knew him the best.  So me and my bro went to visit together. I arrived on a Friday. That weekend my dad wasn’t responding to antipyretics any more for his fever. He slept all the time. Constantly. He never opened his eyes that weekend.  His breathing was rapid and labored. I spent a lot of the time sleeping on the futon on the floor next to his bed. His breathing was so shallow and fast.

The hospice nurses started giving him morphine and Ativan before I got there. They instructed my mom how to do it, and how much. Basically ‘as needed,’ to make his passing comfortable. She gave him some as she thought he needed it, but very conservatively.

morphine, and lorazepam – 2mg/ml “.5 to 1mg every 4- 6 hrs”

They were giving him .5ml lorazepam.. my mom was giving him that amount.

But I saw he was constantly having labored rapid breathing. I called hospice and reported his breaths per minute, and his appearance. They said since he sounded so labored, it would be good to raise the dose, and that that is what they would do if they were with us. I asked my mom if she saw improvement in his condition when she gave him the meds. she said no. she said that there was no change, but that she was scared to give him more.

((When i was younger, i used to have really bad asthma. there were times when i was breathing rapidly like that, and had labored, shallow breaths. I remember it being really tiring, sometimes achey, because of the rapid constant movement of intercostal muscles. Sometimes scary, thinking my body would just konk out and not be able to keep up with demand for oxygen. like the shittier your breathing, the harder you had to work to breathe, the more oxygen you used up, the more you needed to breathe.. so you’d do more shitty hard breathing.))

so i remembered this, and i told the hospice nurses, and they agreed.. actually when i told them his breaths per minute, plus my description of him, it was enough that they thought he should have more.

again, he was on .5ml, every 4-6 hours.

they said.. raise it to 1ml. They said, usually people got 2-6ml. sometimes up to 10.

I swabbed out his mouth.. there was a lot of dark fluid pooled in his cheek and the spaces between his teeth. i thought maybe he was aspirating some of that fluid and that was contributing to his breathing problems.

I waited until about 4 hours after his previous dose.

then i gave him about .70-.75. it was less than what they recommended. i had my mom look at the dose i was giving him. she looked, said it looked good. said she agreed that yeah, he probably should be getting more.

his breathing slowed. he looked relaxed. his face didn’t look like it was straining so much.

his breathing slowed some more.

In the next 40 minutes, i checked his breathing so many times. I looked up on the internet about absorption rates for liquid morphine.  I was trying to confirm whether or not I did the right thing. According to the hospice nurses, and my mom, I did.. but his breathing kept slowing.. and slowing.. then stopped.

about 40 minutes after i gave him the meds, he died.
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people say.. the hospice nurses.. my mom, my brother, my roommate who is a molecular bio guy who understands a lil bit about meds metabolism.. all say that its not something i should wonder about, if its my fault. my roommate said, its possible that the dose i gave him killed him, but its not knowable, even with the right kind of assays, it would have been hard to predict how he would have reacted.

—

maybe i should have gotten a better idea of the frequency and volume of his dosing.. even though what i gave him was less than the recommended, i wasn’t totally sure of the actual time between doses. or maybe i should not have swabbed his cheek out. maybe his saliva was diluting it and thats why it wasn’t working at the original dose. those are precautions i could have made without knowing too much about med metabolism or concentration checks.

but everyone says i couldn’t have known how he was going to react. they say, its possible it was just his time to go. i read about this too, that it happens with hospice people. someones going to give him the last one. someones going to be the last person to give him something. it doesnt come with the risk of being ‘at fault’.

i dunno.

anyway..

so my dad died then.. in some way im kind of glad i was the one to do it. it feels awful, but better me, than someone else.  i don’t know that id want my mom to have been the one to do it. shes been taking care of him for so long. i don’t know that id want a stranger to have done it.
it freed my mom up some. it freed me up some.

when he died.. we called hospice.. they came in and confirmed.. we called the hongwanji.. minister came in and gave bedside rites. hospice nurse offered a suggestion that sometimes people like to wait a day to sort of ‘say goodbye’ to the deceased. so my mom waited.

he spent one more night in his bedroom.

my mom watched tv. it was a comedy or something. she was laughing and watching tv. we had dinner together. she put grandma to bed, cleaned up a bit, went to sleep on the futon on the floor next to his bed.

it was like nothing changed.

hospice came by the next morning, and called the mortuary for pick up. she wiped him down, changed his diaper, put him in some new clothes. put lavender balm on him (now lavender reminds me of freshly dead old japanese men).

he was stiff and cold. his jaw was stuck in an open position. me, the hospice nurse, and the mortuary staff came in and tried to force it shut. it was stuck open.

everyone was nice, courteous, professional, attentive, thoughful. the two handlers picked him up.. he was totally stiff.. and walked him into the hallway where the gurney was. put him in his bag.

they asked at every step, if we were ok with it. if we were ready. my mom said yes, it was ok, she was ok.. it went smoothly. hospice nurse cried a bit.

they rolled him down the ramp at the side of our house. we all followed.
they rolled him up into the back of this SUV. they started raising him and pushing him into the back.

my mom started crying
i hugged her. i didnt cry.

she said it was really over, and that hes not coming back.

she said stuff like that the previous afternoon and night.

the biggest loss was.. she had.. i think i also had.. this fantasy that hed just ‘wake up’ and snap out of the alzheimers.. but when he died.. thats when we knew for sure that would never happen.

we both knew.. but we still had hope. even though we knew better.

anyway that was when my dad died.

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and now… now i have recurring nightmares, of him sitting up in bed, either crazy or fine, then deteriorating mentally really quickly, sometimes raving with alzheimer’s nonsense, sometimes just turning into a vegetable, then dying. alive to rapid dying, again and again.  I wake up sometimes, and im confused if hes still alive or dead,if he became uncrazy for a few moments or not, if we really buried him or not, if i still have to deal with funeral stuff, hospice stuff, benefits stuff.

and yeah, he had alzheimer’s… so.. all that junk about him dying, and me knowing i had a hand in it.. the recurring nightmares, crying in my sleep every week, waking up feeling like i was just in a screaming match… that wasn’t even the worst of it.  The worst was when he was alive, with Alzheimer’s.

I don’t sleep well.. my concentration is shitty.. i have awful mood swings.

I’m worried I’m going to get Alzheimer’s too, like he had. I worry about it every time I make a mistake, or forget any little thing.  All but one of his siblings have dementia of some kind.

..theres more, but i might put it in another post…

Anyway, now that he’s dead, I decided I am going to get on with my life and get things going to take care of myself. but… I think.. well.. what’s the point if I’m going to end up like him, or if I am already on my way.  I try… I’m trying.. but its so tiring, and maybe, its for nothing.