30 Days

Once we were done dealing with the nightmare that was the "skilled nursing facility" and they finally found what pain meds seemed to work for her, we felt relief.  Now my mind swirled with the goal of getting her home.  She was so obsessed with that for a week.  It started on the 23rd when she was told they had to give her 60 day notice on her place.  It was like that set off this horrible 'to do list' in her mind and because she couldn't communicate effectively, she would get caught in this loop of what she wanted to say but couldn't.  It became apparent what her goal was as we were sitting around her bed one night.  She asked if the Mr could move her leg toward him.  He moved it slightly and she said "more."  I said "do you mean the other way because you're near the edge and you usually want your leg the other way."  She looked at me to signal she heard me then looked back at the Mr. "pull toward you and off the side."  That little bugger was trying to make a jail break and was using my sweet Mr, whom she knew would do anything for her, as her accomplice!!  😂

With each passing day, her ability to talk to us decreased so we had to decipher what she was trying to say which became exhausting.  She couldn't complete her thought and if we didn't guess correctly, she would continue in her loop until we had to give answers like "yes", "okay" or "we've got you.  Nothing for you to worry about now but getting better."  I cannot imagine the mental torture for her.  It's what keeps me up at night.  She may not have dementia but end of life processes start to very closely mimic it so it was like getting to not only relive the nightmare with grandma at an accelerated rate but all of the diagnosises, medical mistakes and neglect by the facility which accelerated this process and were impeding what her end goal was which was to go home to die.  

I swirled out of control pleading with the Mr to talk to the POA about getting her home.  It was my only focus, the only thing I could try to do for her.  She did so much for me and sacrificed so much after becoming a single mother- please God, let me give her her dying wish.  It's all she talked about to the point of torturing herself and I couldn't take knowing I hadn't done everything I could short of unlocking the brakes on her bed just after her last pain med dose and wheeling her ass down the road.  Don't think I wouldn't have done it if I thought I could push her up on a particular incline on the road.  "Nothing to see here folks!  Avert your eyes as I try not to make this roadkill a speed bump for her."

I kept checking her portal as I did every morning to ready myself for what we were facing for the day.  I told the Mr it was time to go, leave work.  When we got there, her nurse- who became a hospice nurse after her father died four years ago- said she needed to talk to us.  She told us she would not survive a transport and they had not found the correct dosage to control her pain.  The way it would need to be administered is not a way they can do at home.  My eyes filled with tears.  I failed her.  If I'd only pushed harder, earlier instead of worrying about if people were going to be pissed off.  Trying to show grace to everyone so as not to step on toes.  I should've said "if you're not going to bring her home, I'm throwing out my dining room table and I'll set her up in the damn living room!"  (It's probably the only thing that would've gotten me to actually clean my house.)  Now she needed inpatient hospice and there was nothing left to fight for on our end but I know damn well she was still going through that checklist in her head.

Her eyes had changed.  I had to tell my brain "don't let this imprint.  This isn't what I want to remember" and pray it somehow listened.  Her immediate family was there.  I sat beside her, holding her hand and stroking her forehead.  Memories came flooding back to me and I started talking to her and sharing them like no one else was there.  From Christmas traditions we had to her taking me to my first concert as well as a few others.  I got a very faint hand squeeze on one of them and the more I told like when my car got impounded after a concert and I had to call her from a payphone at 12:30am to come get me, she gave a weak squeeze or a little lift of the corner of her mouth.  I was going to bombard her with memories we shared.  I retold the story about me asking her for birth control in a restaurant we went to every week and said I did it there because I knew she couldn't yell at me in front of everyone and got a little squeeze.  There was no one there but us in my mind.  Laughing as I retold countless things and when her high school friends showed up, I said "it's like a reunion of all of your favorite people!"  *squeeze*  I told them she could hear them and I verified an infamous story about her getting drunk on strawberry Boone's Farm back in the day which had gotten a squeeze earlier.  The Mr and I took a lap and I told him I hoped I wasn't going to Chenowith her to death like Billy did to Brenda in the finale of Six Feet Under.  As the people filed out and we were left with immediate family, it was quiet.  If staring at her praying for a miracle could've made her open her eyes and go "sike!", we could've pulled it off in those moments.

Then it was just the Mr and I left.  I asked him to go down to the car to get the pictures and cards we put up in her hell hole room so she could be surrounded by love.  I cried to her telling her how unfair it all was, apologized for being a shitty daughter, thanked her for all she sacrificed to give me a wonderful life and told her I didn't know how I was going to live without her.  I said the Mr would take care of me like he promised her when she told him to only two short weeks earlier.  The Mr came back and we hung up the pictures on the TV in case she was able to see it.  We hung up the cards on the wall so she could feel the well wishes.  We pulled out the Mr's phone and I played her a Blake Shelton and Luke Bryan song...two of her country boys she liked to see in concert.  Then I pulled up the OG...Kenny Rogers.   I sat at her bedside and played Through the Years as I rubbed her soft hand taking in every touch.  Then we moved on to Lucille and then several favorites like Islands in the Stream, The Gambler, You Decorated My Life and Lady.  You know the Mr loves her if he's willing to sing country music to her.  While she couldn't communicate, there were three times we both swear we saw her jaw moving side to side for a moment or two.  She was 'singing' with us.  I ended with Kenny's version of My Favorite Things from the Christmas album she loved to play and we still play to this day every Christmas.  I kissed her forehead, told her I would see her tomorrow and now I wanted her to go to sleep and dream of her favorite things.  I got the TV remote /speaker set to Golden Girls and close to her ear as she always fell asleep to it every night for years.  We said our goodbyes and I love you's.  I turned to take what I knew could be one last look at her.  We left and I cried making our way to the elevators.  

I got the call that mom passed at 5:05am.  The chaplain said he could call her siblings and I said I would do it.  We threw on the clothes we peeled off 6 hours earlier.  As we made our way to the hospital, I felt such peace at how we sent her off.  We had our privacy with her, sang her favorite songs and knew she could feel the love around her.  As we walked in, I braced myself.  I asked the chaplain if she looked traumatizing and he told me I could see her with her eyes and mouth open and her skin could be pale and/or discolored.  She was none of those things.  Her eyes were closed which means the nurse followed my instructions to please close her eyelids after giving her eye drops after her bath so they wouldn't dry overnight.  Her mouth was closed with a slight peaceful smile on her face.  It was such a different look than what had penetrated the previous three days.  I kissed her forehead, stroked her hair and rubbed her arm telling her how much I loved her, how proud I was of her, how beautiful she was and how much we enjoyed singing with her.  I began singing Lucille to her as her sibling came in.  I told her how we had a party as she looked at the pictures and cards hanging.  We left to give them privacy, talked with the chaplain a minute or so and her nurse from day shift came in.  She talked to her and told her how much she would miss her new friend.  We thanked her and the nurse who was on shift when she passed for taking care of her.  I was an orphan now.  Rudderless.  Adrift with no anchor in this big, now scary, thing called life.  Any thoughts, dreams or plans I had for and with her were gone. 

It took 30 days.

Twelve days to be declared terminal and thirty to be gone.

A part of me went with her and people are right...I will never be the same.

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