you guys… she’s rallying.

i spent the majority of last night watching mom’s chest rise and fall, stop for a few seconds, then rise and fall again.  repeat, repeat, repeat.

the nights, for whatever reason, are much worse than the days.  just like when you have the flu – i hate the nights.  last night i slept beside her, holding her hand, fully expecting to wake up next to her body this morning.

it’s so strange though.  the nights are so bad.  like night and day (no pun intended).  if i were a bettin’ mama – i’d bet my boots she goes in the night.  they are just so different than the days.

i laid beside mom holding her hand and talking to her all night .  i finally fell asleep at about 4am.  even though there really isn’t anywhere i’d rather be – being up here is so hard.  i – like mom – am in complete limbo.  waiting, waiting, wondering “is this her last breath? no… ok – how about this one?”  the pauses grew longer last night – but she kept fighting.

last night she was 100% unresponsive to me.  i thought she was SO close to gone.  her hands were cold to the touch. her breathing was slowing and she had frequent periods where she stopped breathing for 5, 7, 10 seconds. the silence was SO loud.   her eyes were half open and her mouth was relaxed.   and then – this morning she was able to open her eyes half way and mumble some things about “going home” and how she’s “ready to go home.”  this is a big BIG change.  up until yesterday she has looked me square in the eyes, stared and said, “quit looking at me like i’m dying.  i AIN’T dying.  when i’m dying – i’ll tell you.  and i ain’t right now.”  but there was that shift.  she realized she was dying… but she certainly hasn’t accepted it.

today when hospice made their daily visit the nurse told me mom’s vitals are wonderful.  her heart is beating strong and steady, her belly is still making noise and she is showing no modeling (the purple and grey color people’s feet turn before they die).  honestly… i was surprised.  i’m not sure why though… the ups and downs we’ve gone through in the last 10 months show no signs of stopping anytime soon.  she’s good and then she’s bad – then she’s good and then she’s bad again.  it’s so hard.  it’s the longest most vomit inducing roller coaster i’ve ever been on.  and i’m becoming ready to get off.  it’s just SO hard.

this afternoon she got the urge to go potty.  i went in and she mumbled to me so i pulled the cord as getting her on and off the commode is a two person job at this point.  when joy (one of my most FAVORITE care partners) came in to help we each took a side and lifted her from laying to sitting position.  and she screamed.  the loudest scream i’ve ever heard.  it was so painful.  she was wincing.  i quickly yelled to joy, “put her down!  put her down!  let go!”  and we slowly laid her back down.  she laid there moaning for a few seconds and joy asked her if she wanted to try again.  she shook her head no.

i’ve debated on whether or not to share this – because it’s personal.  and embarrassing.  my goal here is certainly not to embarrass my mom.  it’s the complete opposite.  it’s to chronicle her death from my eyes.  from my view.  and omitting information is stupid.  this is her story and if anything – i want to honor her – and forever preserve her spirit.  her will to live.  the way she loves.  i wish someone who had gone before me down this road had written such an honest account of the days and hours and someday i’ll look back on this and want the truth.  the whole truth.  and so… i’m sharing.

joy told mom that if she can’t get up because it’s too painful – she’d have to pee in her adult pull ups.  mom adamantly opposed to this and so joy told her that if she couldn’t get up and she wouldn’t pee in her panties she’d have to call hospice and tell them to put in a catheter.  mom also didn’t want that.  out of exhaustion – she closed her eyes and went back to sleep.  she chose not to choose.

and so – joy called hospice.  and told me they’d be here soon and she’d be back to check on us soon.  she left.

then i was alone again… and there was trouble.  about 20 minutes later mom started screaming from her room.  i ran back in and found her propped up on her elbows in horrible pain.  i said, “mom – where are you going?  you have to let me help you.”  and i could tell that angry mama bear had returned.  her eyes were wide open and her pupils were dilated.  “get out of my way – i have to go to the bathroom.”  she said.  “mom – you can’t get up right now.  i can’t hold you and you can’t bear your weight on your legs.  you’ll fall.”  i told her.  “the hell i will – don’t bleeping fight me on this kenzie.  i have to PEEEEE!”  she said as she swatted at me.  she continued to try to get up and yelled because it was so painful.  i was frantic.  i was pulling the highgate cord – and they were busy.  i called hospice and they were 20 minutes out.  i pushed the morphine pump button about 50 times but it only releases on demand every 20 minutes and i was locked out.  i had nothing.  no help – no meds- and not enough strength to get her out of bed and onto the potty.  and she was LIVID.  at me.  i was literally holding her on the bed so she wouldn’t hurt herself and she was cussing and carrying on.  it was crazy.

i can’t hang with those kinds of episodes.  finally – she rested.  she fell asleep again after wearing herself out.  but it was hard on her.  and me.  i hated it.  HATED it.

hospice says she has end of life agitation.  she’s very busy.  her mind won’t relax.  she’s very anxious and if you know her (or me – HA) you know how stubborn we are.  we are incredibly hard headed.  we know what we want and we’ll do whatever we have to do to get it.  we’re trouble, ya’ll.  take us or leave us.  <3

i told them that i couldn’t do those anymore.  i just can’t hang.  i told them that these periods where she is SO angry were just too much.  and after yesterday’s episode where she was up out of bed and then fell down – it’s out of control.  it’s crazy though – because 23.5 hours out of the day – she is sleeping.  and near the end.  but those angry times are scary times.

it took a lot of out me.  and i was really tearful when her social worker, the chaplian and her nurse came up.  teri (the social worker) said hospice will pay for a 5 day respite care at a nursing home for a caretaker breakdown.  she offered – i declined.  i told her i know my mom wouldn’t want that.  even IIIII don’t want that – but these episodes take a lot out of both of us.

so they started haldol to help her relax.  it’s a pretty serious med – but ultimately – something had to give.  i had to choose between her being anxious and agitated and trying to walk around when she clearly CAN’T or have her bring another med on board to help her relax.  i chose the latter.  they didn’t come right out and say it – but i got the impression choosing to start this med will shorten her already SHORT life.  but you guys – i had to.  i can’t have her lying around in pain.  if i didn’t start it – maybe she’d live another day or two – but at what cost?  she’d be lying around in pain and i’d be having to listen for movement and be ready for an elbow to the face at any moment and i just couldn’t.  i just couldn’t.  and it’s these decisions that are draining the life out of me.

part of me is sitting here dying with her.  and it hurts.

hospice discontinued all her meds today and she is now 100% on hospice care.  she can no longer swallow pills (or large amounts of water) – so her only meds now are morphine and haldol.

when we were leaving for oregon i asked dr. landsverk (mom’s liver specialist) what it would look like at the end – what to expect.  he said that she’d stop eating, stop drinking, stop having voids and that eventually hospice would stop her medicines because she could no longer swallow.  he said that when it got to that point she would likely live between 24-48 hours.  but – now that we’re here – hospice seems to think it could be days.  hospice says her body (obviously other than her liver) is strong.  her vitals are strong and all her other organs are relatively strong as well.  hospice said it’s entirely different case than a little old 85 year old woman who’s been shutting down for 20 years.  me?  i have NO idea.  i thought it did – but i didn’t.  all i know is these crazy times where angry mama bear shows up make me want to borrow her morphine line for a little while.  cuz it’s tough.  SO incredibly tough.

and so… that’s all i’ve got.  the haldol appears to be working… but it’s definitely made her much MUCH sleepier.  man – this is hard.  i’m listening to her breath from the recliner.  she breathes and stops, breathes and stops.  the breaks are getting longer – but hospice said it’s not uncommon for patients to do this and have 30 seconds to 1 minutes pauses and maintain for days and days.  is that really possible?!  dunno.  only god knows and i’m standing in faith that his perfect timing – be it today or friday – will be exactly right.

please keep praying… tis’ hard over here.

until soon,

*m