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

i’m certain… it won’t be long now.

this morning mom came to the realization that she is dying.  and it was hard for her.  i don’t think she accepted it – but she now knows (for sure) that she is on her way out.  there were lots of tears today.  it was very very hard.  very emotional.

at about 2pm mom went to sleep and became somewhat unresponsive.  at about 6pm she was a little further gone and as of now (130am) she no longer opens her eyes or speaks.

tonight i spent a lot of time in mom’s room.  these last couple days i’ve been in and out of the room.  i was scared… nervous.  i’m feeling a little guilty about that now.  feeling like i may have wasted precious, precious moments.  moments where she may have responded.  and now it’s too late.

my heart is breaking.  i STILL can’t believe this is really happening.  it’s insane.  she’s really going.

tonight i painted her nails, prayed over her, sung to her and just talked about old stuff that we had done.  i know she’s still in there because sometimes when i would talk about things we used to do she would smile for about a half a second.  it was a weird smile though – almost not conscious.  towards the end of our conversation tonight i told her to let go – that she didn’t have to fight anymore.  i told her she’s always been my best friend.  i told her i’d miss her – but we’d be ok.  i told her i loved her.  and when i said that her lips stayed together and no sound came out – but i know she was trying to say, “i love you too.”  her lips moved the way they would if her lips would have parted and sound would have come – “i love you too.”  i know it.

i forgot to mention something earlier… something really magical happened today.  after the initial crazy stuff happened (the angry and the sad mama bear stuff) and she was back in bed literally not even 10 minutes – someone VERY special came to visit.  mrs. rita – one of the most genuine and downright sweetest people on the face of this planet showed up.  she walked in and as i realized who she was – and that she really was standing in the doorway – i started to cry.  that snot ball i’ve been telling you i was saving for one of the highgate employees?  well – it landed right on her.  (sorry rita!)   whether or not you are religious – whether or not you’ve heard the good news – whether or not you know this world’s savior – i’m here to tell you this for sure.  rita’s visit – well… it was all in god’s sweet perfect timing.  mom realized she was dying and not even 10 minutes after this horrible realization God delivered one of the sweetest women in the world to remind us both that we are perfect, holy and righteous in His eyes. she reminded us that we don’t have to question our salvation and whether or not we’ve done “enough” or whether we are “enough.”  she reminded us that we don’t have to do anything but accept that love and that He (and my dad, papa, great grandma, great grandpa, great uncle james and son) are all waiting for her – arms open wide.  she came – she prayed – it was amazing.  it was exactly what my mama and i needed.  it was then that the shift happened.  she cried – we all cried – but i was so free in that moment.  thinking of that tender prayer in the hospital the last time mom had an episode.  so grateful.  thank you for answering that call god put on your heart to come here at that exact moment rita.  there hasn’t been a moment we’ve needed anymore more.  for this, my sweet sweet friend, you certainly will hear – well done good and faithful servant.  <3

i’m headed back into her room now.  i’m going to lay beside her and try to get some rest.

until soon,

*m

this morning i was awakened by the sound of my mom’s bedroom door slamming.

when i woke up – i was confused.  not sure what was happening.  maybe even a little disoriented from the lack of sleep.  after i remembered where i was and what’s happening i sprung up from the couch and ran into the bedroom.  i found one ANGRY mama bear.  she was upright and slamming things around.  understand – she’s pretty much bed ridden at this point.  but this morning – no sir – she had gotten herself up outta bed and was stomping around her room.

here’s how it went down:

me: “ummm… what’s up mom?  you ok?”
mom:  “NO i’m not ok kenzie.  what the hell is going on here?  why the bleep did you let them move me into this hell hole?  i want my old room back.  i want 302.”
me:  “mom – this is 302.  you are in your old room.”
mom:  “no i’m not kenzie.  i’m not crazy.  open your bleeping eyes.  why am i here?  i’m perfectly fine.  i want my big room and my shower and my kitchen.”
me:  :pulls the help cord:  “mmkay – well let’s get you back into bed.”
mom:  :falls:

great.

i lifted her (as best as i could) up off the floor and onto the commode.  the cause of the angry?  homegirl had to poop.

as she sat there, doing her business, tears welled up in her eyes.  her lips curled up and pointed outward and she began to cry.  hysterically.  angry mama bear was quickly replaced with sad SAD mama bear.  and that’s pretty much where we’ve been since this morning.

she’ll come to (as much as someone who’s hopped up on morphine does) and say, “i love you kenzie.  i really really love you.”  and then she trails off and whispers some things and then i make out the very clearly whispered word, “dying.”

today – i think she gets it.  she understands and realizes what’s happening and she is SAD.  and damn it – so am i.

i’m so thankful for these moments.  i’ve been camped out on her bed all morning – her coming and going.  when she comes too – she cries.  and i cry.  it’s so hard – but so tender and heartfelt.  when i was  in high school (and even younger) we were BFFs.  then we started butting heads and we’ve completely WASTED these last 4-5 years being at each other’s throat.  i can’t count on both hands how many times i’ve looked her in the eyes and coldly asked, “do you want to die mom?  because if you don’t do “xyz” you will.”  i’ve been fighting SO hard to ward off these days – this season – that i completely lost touch with the fact that death comes for all of us – and regardless whether or not she was taking care of herself – no one gets out alive.  i am her daughter and she is my mom.  nothing changes that.

my perception of “bad” has changed daily.  i remember thinking that she was doing realllllly bad on friday.  on saturday i realized she wasn’t doing too bad.  on saturday i thought she was doing reallllly bad.  today – i realized she still wasn’t doing that bad.  each and everyday that passes i realize that she still may have a long way to go.  she’s still present.  if someone knocks on the door – she’s still very present – she opens her eyes and yells, “come in!”  just as she’s done since she moved into highgate in july.  one foot in this world – one foot in the next.

oh how i do wish i had a crystal ball.

until soon,

*m

::shakes fist at october::

historically, october has been very unkind to my family.  every passing year – something – goes horribly wrong in this wretched month.  in past octobers kevin and i have almost ended our marriage, my dad passed away, i lost our second baby, dylan, we lost a house, i almost lost kevin, and now… here we are.  just waiting – watching – the hours tick by in 2012.

i’ve found myself bargaining with god this evening morning.  HA.  i know where that’s gotten me in the past (uhhh – hello – nowhere).  over the course of my life many people have told me that i’m a control freak.  uhhh – duh.  i don’t mean to be – it just happens.  it’s just part of who i am.  i’m comfortable when i’m in control.  feeling like i can “fix” things and take care of the people i care about makes me feel secure.  i feel like if i can convince god to contain our miseries in this one month we’ll be a-ok the other 11 months.  i.  am.  dumb.

the older i get – the more god is showing me that i am completely out of control.  i see that.  clearly.  that in every situation i have NO control.  i mean, sure i can control how i react in situations – but no matter what i do – i have to trust god because i have no control on the outcomes.  that i must live, laugh, and love.  live as though there is no hurt, laugh loudly and often, love deeply.  because we are all vulnerable.  every single one of us.  we live – we die.  and it hurts.

since mom’s diagnosis was confirmed and handed to us in january, i’ve been expecting her to go in october.  fearful she will go in october.  because that’s how october is (and has always been) to us.  now, as october’s days are running out, i’m finding myself begging god to show my mama bear mercy.  “please god – take my mamas home.  please.  send my dad to get her.  i’m begging you.”  we really are at the point now where it will absolutely be a blessing when she passes.  gah.  you have no idea how mother-loving hard that was to type.  to think.  to feel.

tonight – or morning or whatever – i’m sitting here – worried.  anxious.  now that my mama’s birthday is over – i find myself thinking about whether or not she will pass on my birthday.  it’s coming up… and it could happen.  and i’m praying that god spares that day.  ultimately – i know that it’s his plan and she’ll go when he’s ready – but ohmygosh… oh hai stress.  anxiety.  the realization i’m a total control freak.

mom is still declining.  this evening she started running a fever.  the morphine and the ammonia are building up in her system and she is growing more and more confused and out of it.  we’re at the point where we are swabbing her mouth.  i remember, very clearly, doing that with my great grandma.  actually – i remember my mom doing it.  sitting over her bedside in that little yellow room with those little pieces of pink foam on a stick and cleaning out her mouth – keeping it moist.  that was at the very end though… and it didn’t last long.

as for me – get this you guys –  i am sick.  i threw up tonight.  my stomach is still unsettled and  i’m under attack in a big way.  i’m not sure if i’m really sick or the signs of stress and anxiety are just presenting themselves in a physical way.  either way – it sucks and i don’t like it.

each passing hour i slowly peek my head around the corner into her room, watching to see if the blankets rise and fall.  it’s incredibly difficult.  i’m finding as time goes on – i’m nervous about being in her room – and i scared she might die “alone” if i’m in the living room.  i’m so unsure of how to handle myself.  and this situation.  and myself IN this situation.  i’m not sure how to guard my heart.  what’s better.  and so, i, too, am in limbo.  scared to be in there, scared to be out here.  it’s exhausting.

you guys keep reaching out – telling me how awesome i am – how “strong” i am.  while i appreciate those words more than you will ever EVER know… you guys… i’m not.  i’m only doing what i can only hope that nora and g-mack someday will do for me.  i pray that i will raise them with compassion and love.  i pray that they will grow loving with their whole hearts and that they will do anything for kev and i – for each other.  sure – i’m taking care of my mom – but what other choice do i have?  she’s my mom.  and at sometime in the very near future she’ll be gone.  and my heart will ache for her.  this is all soooo emotional.  and just so hard.

roh roh – i feel like i’m having a little bit of a breakdown.  right here on the blog.  buckle yo’ seat belt blogland.  alas.

overall – things are much of the same.  we’re just watching… waiting.

until soon,

*m

today mom is 59.

time for reflection.  when you say someone is 59 you automatically think, “oh -well, she’s no spring chicken.  glad i’m only *insert your age* here.”  but when you read the obituary of someone who is only 59 you take notice and wonder what the crap happened.  why they died so young.

last night continued to be tough.  i finally fell asleep at about 4am and woke back up a couple hours later.  i slowly crept around the corner – not knowing what to expect.  before i looked in – i listened.  her breathing was quiet.  there was no more gasping in for breath and moaning out the excess.  so i slowly looked in.  she was silent and my heart sank.  then – she twitched… this is such an emotional rollercoaster… seriously.  fo’ realz.

i continued into the room and wrapped my hand around hers, “mom?”  she immediately opened her eyes.  “good morning!  how’d you sleep?  can i get you some breakfast?  i can order something for you.”  she said.  wait, what?  she was lucid.  i told her happy birthday and she looked at me… realllllly looked at me.  into my soul and put her hand on my cheek and said, “i love you baby.”  gah.  i love you too mom.  more than you will ever EVER know.

then she was gone again.  back aboard the crazy train.  just like that.  but it’s in THOSE moments that i am forever grateful that my husband is ok with my spending every waking minute up here.  because those are the moments i just couldn’t “time right” – i would miss those.  sure – the other 23 hours and 58 minutes of the day are… well… awful really.  but those 2 minutes of clarity are worth it all.

they brought us breakfast – and she ate a couple bites of hashbrowns a bite of toast and a couple sips of water. her body just isn’t hungry anymore.

kev brought the kids up to visit and brought the most gorgeous bouquet of flowers that my aunt steph, aunt sherrill and grandma sent to my mom for her birthday. it probably weighs more than nora.  no joke.  it’s HUGE.  and so very lovely.

when the kids went into mom’s room she sat right up and was so happy to see them.  they were here about 45 minutes.  nora made her a birthday card and she was so proud.  “here you go gammie.  happy birfday.  i lub you.”  nora is so sweet.  so innocent.  and so incredibly sensitve.

then it was time for singing and cake.  mom was so alert – even helped nora and i sing her happy birthday.  she clapped at the end – she really was very present the whole time.  then i lifted nora onto her bed and they ate cake together.  (which sidenote – wasn’t really cake – it was cheesecake.  plain cheesecake.  so peace out bucket list item #17).  two birds – one stone.  that’s how i roll baby.  bam.

i’m now going to grace you with the cell phone video i made kevin take of the whole sha-bang.  please excuse the fact that i haven’t showered and am still wearing my pajamas and can less than carry a tune.  alas.

i know she doesn’t look great – but i kind of feel like seeing her will bring peace to some people.  this is her at 100%.  she’s fighting her heart out you guys.

after the kids left, she fell asleep and has pretty much been sleeping since.

we had another visitor today – mom’s friend faye dropped by.  they visited for a little bit and faye kept an eye on mom while i took a much needed shower.  so – you’ll be happy to know i’m not looking like i do in the video all day.  bwaaahahaha.  actually – yes i am.  that’s a lie.  i’m just in different jammies.  alas.

mom’s super super sleepy – but overall – hanging in there.

keep praying, please.

until soon,

*m

i’m afraid i’m becoming an insomniac.

i’m sitting in mom’s recliner in her living room listening to her breathe… i’m almost afraid to sleep only to find she’s gone when i wake up.  it’s a very scary feeling.  i’m very very anxious.  this is hard you guys.  much harder than i thought it would be.

i’m watching her go – right in front of my eyes and it’s so incredibly surreal.  her breaths are becoming increasingly taxing and i can tell it’s getting harder as the hours go by.  every now and again there is a short pause followed by a deep gasping breath…  it’s really happening.

mama bear and i had some visitors this evening and it was such a welcome break from the grind of watching this all play out.  lee and kelly (the biker dude who took mom out on her last ride and his very lovely wifey who is my new bff <3) stopped by and visited.  when they got here i tried to prep them a little bit with the usual, “mom is pretty incoherent.  please don’t take it personal if she doesn’t recognize you.  she says some really off the wall things and talks to people we can’t see.  she may or not open her eyes, blah, blah, blah.”

and then – in walk kelly and lee (decked out in his leathers) into mom’s room and instantly mom gets this HUGE smile across her face and says, “haaaayyy leeeeee!”  are you kidding me?!?  she sat up in bed and started to swing her legs around as if she was going to get on up and collect some love.  i had to put the brakes on though – because i accidentally dropped her when i was giving her a shower earlier because she is SO unsteady on her feet now and i just couldn’t risk the fall.  but – sure nuff’.  she perked right up for them as she and lee talked about the ride and how awesome it was.  lee brought this awesome awesome biker prayer and read it to mom and we all teared up a little bit.  it was a very tender moment.

i couldn’t believe how she just perked right up and talked as if it was any other day in any other situation.  it was so much fun.  that sparkle was there… even if only for a couple minutes.

then, when mom pretty much fell asleep on them mid sentence they came in the living room and we visited about what it was like growing up with my mama as my mama.  it was so much fun to talk about the good ole’ days.  it made my heart smile.  i told them things i haven’t thought about in years.  stuff about dad, stuff about harleys, stuff about what it was like before we came to montana.  it was great.  thanks for coming you guys – i adore you both so so SO much.  <3

mom’s morphine pump is in full swing now.  they stuck the needle in her belly because she’s picking at stuff.  he clothes, the bed, her arms.  she’s also hallucinating that things are in her hand when really, they aren’t.  she’s still seeing things and talking to people whom maybe are there – but i surely can’t see them.

i’ve been praying over her all night.  i’m praying for mercy.  i’m praying that god will send my dad and toby son down to get her and bring her home.  i’m praying for peace and comfort in my own heart.  i’m praying that i can fill the enormous void that her death will inevitably leave in my kids’ lives.  in my own life.  my mama is dying and there isn’t a thing i can do about it.  my heart is so sad.

i’m also very VERY sad to report mom had a seizure tonight.  the med tech came in to dose out her lactulose and she started shaking.  it was mild – but still very scary.  i. did. not. like. it.  (sidenote – i was thinking and praying for you and your family tonight annie – you are so amazing.  my heart pours out to you and jules.  <3).  the nurse was paged and came up immediately and explained that seizures in someone who’s liver is failing is a very common sign that her body is shutting down.  i started to cry.  i just stood there – fighting back tears – trying so hard to be strong.  i mean – i know that’s what’s happening but i really keep expecting her to rally and be ok.  because that’s what she does.  EVERY. SINGLE. TIME.  but she’s not.  she’s declining… and quickly.

i keep laying next to her in bed in the mindset that she has the flu and will get better.  but she won’t – she isn’t.  and i’m not sure how i’m handling it now that it’s just the two of us here.  her dying, me watching.  it’s very hard.  the highgate and hospice nurses and care partners are taking good care of me.  they bring me meals 3 times a day and check in to see how i am.  i plaster this big stupid smile on my face and tell them i’m ok… but it’s only because that big ball of i’m about ready to cry is in my throat trying so desperately to bust out so i can blow snot all over their clean dark blue highgate logo-ed shirts.  you know what i’m talking about… when your throat burns so bad and tears well up in your eyes.

it’s just so much.  i can’t believe it’s happening.  i know i’m like a broken record – but it’s so surreal.  i’m not even 30 – my kids are babies – and she’s on her way out.

she’s really half here half gone now.  her heart is still fighting her body to stay alive.  but – the morphine is building and she’s sleeping more and more.  she needs it though – without that morphine she lays around moaning and in very obvious pain.  but – at the end of the day – i’m still having to make some very hard decisions.  my choices were to let her lay in bed in pain or give her the pain meds she needs to be comfortable.  well – comfortable probably isn’t the best word – pain free?  better?  i don’t know… anyway – i’ve chosen the latter.  and the loopyness is the side effect.  i haven’t been able to have a coherent conversation since last night in the middle of the night.  looks like that was the last one.  and it was about a morphine pump and whether or not she’s pooped enough.  fail.  ugh.

alright – i’m rambling.  i’m just… sad.  anxious.

keep praying.

until tomorrow,

*m

yesterday began the journey i started when mom’s failing health delivered a fork in the road i wasn’t expecting.

mom has continued to decline – so much so that she now needs 24 hour supervision.  and so… rather than hiring help to take care of her – i decided that i’d hire help to take care of nora and g-mack-a-doodle.

and so… i now have a live in nanny that is with my kids around the clock.  i’m so incredibly grateful to have such an amazing husband who is so compassionate and understanding.  he is completely on board with my spending every moment i can with the mama bear.  each time my mama spirals downward – he’s there to pick me off, dust me off and help me figure the best way to move forward.  he is so level headed and so loving in this awful situation.  i love him a little more each and every single day.

that said; i’m sad to report that we are at the end of the road here friends.  mom will be getting a morphine pump this afternoon.  she’s been taking oral liquid morphine and it’s just not doing the job and we haven’t been able to get it in a timely matter at night.  so i visited with edye this morning and together we decided that installing the pump in her abdomen was the best idea.  that way – when she is in pain, she can push the button and get relief.  instantly.  and that is what she is so desperately seeking now.

mom is beginning to refuse her medicine and struggles to take it when she doesn’t refuse.  we are now 100% focused on “comfort” care.  no more treating the symptoms.

mom is totally incoherent at this point.  she no longer is able to talk (at least coherently) and can barley stand to shimmy into the wheelchair for meals and potty breaks.  i’m lifting her off the bed and into the chair then out of the chair and onto the potty.  then switch and reverse it when we get back in bed.  it’s very difficult but i’m trying my best to make sure that she has compassionate care that allows her dignity to remain in tact.  i feel like doing all these things myself in her last days is the best for everyone.

she’s been hallucinating and talking to people and things that only she can see.  she waves, smiles and whispers to them all the time.  i remember this very clearly from when my dad passed away.  it’s like she’s half way here – half way gone.

the thing is though… her spirit, her energy, her heart and her mind – they do NOT want to die.  they aren’t ready.  they want to see my kids grow up.  they want to be at their graduations, their weddings, their successes and even their failures.  she still wants SO badly to experience life with them.  and it’s tearing my heart out.  her body is so over this world.  her body would have died months ago if the fight wasn’t so hard in her heart and mind.  she’s teetering on the edge and she is FIGHTING so hard.  at this point – she’s had enough liquid morphine to lay out an elephant but she is fighting with everything she’s got.  she can’t maintain though.  and the last 12 hours have been very difficult.

we shared dinner last night as she had what may prove to be the last of her coherent time and conversation.  she was tired – but her old self.  we visited, laughed and cried a little and then she told me to put her hat on.  i said, “uhhh, what hat?”  and she replied, “that one.”  and pointed to the meal tray cover.  i laughed… but obliged.  i thought you’d like to see the outcome.  good sweet lord – i will miss her.  and these silly times.  my mama bear is on the way out…

keep us in your prayers.  we’re really praying for God to show her mercy and grace at this point.  and to give me courage and strength.  and understanding.  and peace for us both.  especially peace.

until later,

*m

yo interwebz.  sorry it’s been so long.  i’ve been in a funk.  a straight up no good funk.

tonight i have a bad news sandwich made out of good news bread.

first slice:

kevin is doing fantastic.  he’s still healing (and will be for a very very long time – like 1-2 years (ugh.  barf).  but – overall his healing really truly has been supernatural – in every way.  God has really blessed his recovery and we are all so grateful.   yesterday we had the follow up in billings with his neurosurgeon and it lasted like 5 minutes because kev is doing so great.  he still has some pain – well – actually – quite a bit of pain.  and his bruises are turning green because they are in that weird stage before they peace out.  you know – that yucky green and yellow stage.  it’s weird.  lolz.  he has physical therapy three times a week – but – he’s back to work full time and we’re getting back into the stride of normalcy.  which is nice.

he still really shouldn’t be picking grant up or bending or twisting – but sometimes i just can’t be everywhere all the time and he has the choice to listen to grant scream or pick the poor kid up.  usually the latter wins.  just don’t tell anyone.  bwaahahaha.

i’m so grateful that he’s ok.  sure – we still have a very, VERY long road ahead of us – but – at the end of the day – he’s alive.  and doing wonderful.

the meat (sandwich guts):

mom took a real bad turn for the worst on friday.  (is it turn for the worse or worst?  either way – it’s bad.  cut me some slack, eh?).   friday afternoon she called me crying.  almost hysterical.  she said, “i’m in a lot of pain.  i need you.  can you please come over?”  so i did.  and she was in a TON of pain.  like worse than ever before.  and she was hostile and belligerent.  every other word was the F bomb and she told me to take her out and shoot her like a dog.  then when the nurse finally came in she told her, “i’m f-ing DYING!  get me some pain killer like NOW!”  it was ugly.

so i called hospice.  because she very obviously wasn’t comfortable.  so they switched up her meds and started her on oxy.  long story short – it made her loopy.  she was unstable on her feet and she started hallucinating.  she was talking to son (our dog who passed away a couple years ago) and asked me why i was brushing my dad’s (who passed away in 2008) hair in the living room and to stop.  all of this – while certainly alarming – really wasn’t a huge concern as i knew the narcotic meds would have this kind of effect.  unfortunately, though, we really are at a point where they are necessary.   she continued to decline over the weekend and we missed our next bucket list item (getting her hair done in a fancy pants salon – shoutout – THANK YOU Niccole.  You are awesome.  And someday – we’ll get together.  <3).   it was hard.  i had family pictures scheduled for monday evening and we missed that too.  by that time mom was bed bound and we weren’t going anywhere.  🙁

fast forward to today.  edye (her normal hospice nurse) was back from vacay and when she came in having not seen mom in a little over a week she knew things weren’t going well.  she immediately took notice of how mom’s eyes and cheeks are starting to sink.  she’s not looking good… at all.

mom has continued to be in a lot of pain.  they are trying to treat it – but it’s hard.  edye stopped the oxy and started mom on morphine today.  which is not a good sign.  well – i mean… it’s keeping her out of pain… for the most part – but morphine really means…   the end.  and my heart is ACHING.  i can’t BELIEVE this is really the reality of the situation.  it’s SO incredibly surreal.  my heart is absolutely broken.

i went over tonight and she was in a lot of pain again – even on the morphine.  so i called hospice and they ordered more meds for her.  she went from 4 to 6 and pretty much fell asleep on me.  i’m praying it lasts long enough for her to get some rest.

she’s really confused – and unstable – and we’re really at the point (or VERY close to) where she needs a 24 hour caregiver.  hospice provided a couple different places that could help but the price is absolutely out of control.  and – perhaps even more importantly – i really want to do it myself.  i know it will be hard – but this is it.  know what i mean?  i want to be there for her.  she’d be there for me – and i want to do it myself.  so i’m trying to line up a 24 hour nanny for the kids so i can be with mom.  i’m needing someone to come and stay 24 hours/day.  it’s hard because i need said person to keep my house clean, cook meals for my family, take nora to and from school, read bedtime stories and brush teeth and hair.  basically – i need someone to pretend to be me while i tend to mom.   it’s hard – because people have lives.  just because my life is at a total stand still – everyone else’s is still moving.   which complicates things.  alas…

second slice:

nora and i went on a date tonight.  we went to elmo at the fieldhouse.  about three weeks ago i bought “sunny seat” tickets that allowed us to meet elmo and super grover before the show.  it also got us some really amazing seats.  front row, dead center.  and it was AWESOME.  all the characters came down at different points of the show and danced in front of us and hugged nora – it was super fun.  we both had a great time.  nora was so excited.

kev thought she’d be scared of them – but no was jose.  everytime they came in front of us to do the show and dance and stuff homegirl would get out of her seat and collect hugs and high fives… she almost didn’t let the show go on.  i ran into one of my friends from high school’s mama and she made the comment, “well – someone is just like her mama.”  LOL.  how funny.  i have been really worried she was just like kev – so shy and reserved.  not tonight.  she was in her element.  she was LOVING it.  she loved EVERYONE.  fun.  <3

until tomorrow,

*m

yesterday was absolutely amazing.

as i sit here and look at my blinking cursor begging me to tell the story – i’m really at a complete loss of words.

when i got to highgate yesterday mom was downstairs in the dining room.  i went in and said, “mama – we gotta go!  come on!”

“uhhhh, no.  i’m waiting for my sugar free ice cream.  i’ll eat it fast.”  she replied.  :banghead:

knowing any second a pack of bikers would be arriving  i said, “mom – i’m serious – we gotta go now.  you’ll have to have ice cream at your next meal.  please.”

“well… can i take it to go?”  she asked.   “NO!  get up!  let’s gooooo!”  i said.  she’s impossible.  LOL.  what can i say – homegirl loves her ice cream.

reluctantly, she came.  and i told her to pop a squat on her walker.

the mailman pulled into highgate and she said, “are we gonna steal a mail truck and go for a joy ride?”   “ummm…. no mom.”

a fire truck passed.  “are we gonna spray somebody with a fire hose?”  she said.  “are you kidding me?!  LOLOLOL.  no mom.  that’s not it.”

then a channel 7 news SUV rolled in, “i ain’t being on no news station.”  she said.  “that’s not for us mom.  i have no idea what they’re doing here.”   hahahaha.

and then – here they came.  12, 13 – maybe even 14 harleys rolled passed highgate and she goes, “oooooo – there’s some nice bikes up in that group!”

then they turned the corner into highgate and she.  about.  died.  hmmm – bad use of words – but you know what i mean.  <3

i said, “wanna go for a ride?”  and her hands came to her head – she was shocked.

it’s partly a blur from there.  lee got off his fatboy and came and shook her hand.  the news camera crews approached for an interview.  i rolled the double bob filled with her leather jacket, boots, headband and glasses.  i helped her get it all on and she gave them an interview.

then – before i knew it – she was on the back of lee’s bike and off they went.  that sparkle in her eyes had returned.  she couldn’t stop smiling.  it was the old sandi – you know – the one we all know and love.  she was so present.  soaking up every rumble of the engines.

it was an amazing day.

last sunday i approached lee, the big bad biker, at our church and told him what was going on with mom.  i told him that we were working on the bucket list and the one last BIG thing i had to check off was a harley ride.  i asked if he wanted to help.  instantly his eyes lit up and this huge smile tore across his face.  he said yes.

ya’ll – he. said. yes.

and he went big.

thursday he called and made sure 1 pm would work for saturday.  i confirmed and he took it from there.

when i woke up saturday morning – it was raining.  i prayed, “please god.  PLEASE.  give me an hour of rain freeness for this ride.  plllllleeeaaassse!”  sure enough.  it was raining and i kid you not – as soon as the pack rumbled in – the rain stopped, the sun broke through the clouds and it all of a sudden was a GORGEOUS fall day.  don’t tell me God doesn’t answer prayers.  BAM!  <3

lee straight up rallied a club for my mamas.  then he called channel 6 and 7 news.  then he rolled up and rumbled the crap outta’ the old folks home.

when they arrived i’m surprised the building didn’t fall down on top of them because in almost every single window three floors high was at least one little old face of a resident from highgate – stealing a looksie at the parade of bikes that had arrived for my mama.

i can’t tell you how grateful i am to be part of such an amazing group of people.  i’ll never EVER be able to repay lee and the rest of the people that showed to do this for her.  this is hands down absolutely NOT something i could have done on my own.

lee – you are amazing.  you have no idea how you blessed both my mom and i.  i will absolutely love you and kelly forever.  <3  thank you.  from the bottom of my heart.  THANK YOU.  i’ll never be able to repay you for that hour of joy that will surely last the rest of her life.  she’s STILL smiling.  God bless you and yours you big bad biker dude.

and now… without further ado:

news coverage:

my photos:

sandra jo’s bucket list:

1. see the ocean (uhhh, check?  lol)
2. put my feet in the sand
3. go to the movie theatre and watch a scary movie and eat popcorn
4. buy a BUCKET of sacry popcorn at the sacry theater in whitehall.  extra butter and no salt.
5. have a beer + clamato juice
6. go on a harley ride
7. have my hair done at a fancy pants salon
8. have kenzie paint my nails
9. ride in a hot air balloon
10. get “property of big bubba” tattooed on my butt
11. have a GIANT 59th harley themed birthday party
12. stay alive until thanksgiving
13. stay alive until christmas
14. go eat at the chinese buffet
15. make a painting with nora
16. go to the children’s museum with nora and grant
17. eat a piece of plain cheesecake
18. eat spagetti at johnny carinos
19. visit the chocolate moose candy store with nora and grant
20. have kenzie make deviled eggs

no – i’m not pregnant.  let’s just clear that up right now.   🙂

today i received 2 dozen of the most beautiful roses i’ve ever seen.  red, pink, white, white with pink edges, white with red edges.  absolutely gorgeous.  and from who you ask?  my husband.  <3  it was such a surprise as he hasn’t even laid a finger on a computer since the accident.  thank goodness for 4G, no?  <3  with the roses came the most thoughtful card – that covered everything.  even when he’s all laid up – he still lubs me.  ::cue the awwwws::

kev didn’t sleep well last night – he had some trouble getting comfortable.  today he was foggy.  just kind of tired and not real sharp.  he’s having trouble thinking on his feet a little bit i think.  it’s all just part of the healing of his brain injury.  it will heal – he’s just feeling some of the healing symptoms i guess.  he took an extra nap today and that seemed to help.

kev also had physical therapy in the pool with rich today.  i think he kind of enjoyed it.  being in the pool he was weightless and all the pressure of his broken back was gone for 30 minutes.  he goes again on friday.

we had dinner with my mom tonight too.  it was really good to see her.  and it was a great excuse to get her out of her room.  i told her we’d meet her in the dining room.  she was excited.  she LOVES to show off our kids.  tonight she even remembered grant’s name is grant – not garth.  :banghead:

she’s doing really well.  she repeated herself a couple times – but overall – looking maybe the best she’s been in the last 3 months or so.  she’s really rallying.  kev and i were talking about it tonight and we think she’s really started to take responsibility for herself because she knows the next episode is her last.  🙁

whatever the reason – she’s doing great and i’m feeling very grateful.

after dinner her and kev took a little stroll around the building.  walker to walker.  it was kinda funny.  i loved it.  i took some video – but i don’t know how to upload it to the blog (i’ve allowed myself to be a bit computer stupid because anytime i need anything – i call super kev and he gets it done… alas).  so a picture will have to do.

at the desk there was a card for ray’s family.  i signed it.  i told them how sorry for their loss i was and how he was my favorite resident.  i told them how he always wanted to take nora on a ride on his scooter up and down the halls.  and… i told them how empty highgate is without him.  i really liked that old dude.  i was feeling the loss tonight at dinner when he wasn’t there – napkin tied around his neck waiting for his diabetic dessert.  i told them i’m praying for them.

nora had a great time at school today too.  she’s becoming quite the little ham.  man – i adore her.

g-mack and i are still sick… but doing a little better today than yesterday.  thank goodness.

until tomorrow,

*m