Life Changing Event...pt3

Im attempting to catch up to the present.
Im attempting to sort and retain the details.
Im attempting to move on.
I can't fix it. I want to fix it.
I want my mother to have her life back.
She deserved more. She deserved better for herself.
I don't know if she ever believed that.

"You've experienced a Life Changing Event"
I have to make a decision. Its holiday weekend.  Columbus day.
The Dr. I want to talk with is away for a week.
I have to make a decision.
Spaulding. Weldon. Others. Rehab centers.
Acute rehab.
I have no idea what this is. I learn.

I live in NYC. My mother lives in and is currently hospitalized in Western Ma.
Spaulding is in Boston. The Dr. I want to speak with emphatically stated Spaulding.
That was before the set back. I need an opinion.
Everyone has one. I have to make the decision.
What if I make the wrong one.

Work. I have to get back. I have to stay. Ive missed so much.
If I come up on my day off,  Mondays and return to work Tuesdays is it enough?
Its 3 hrs. Boston is 5. Her cat, her home, her family, her business, her friends,
her entire support system is here.

My Mother is the oldest of nine. four brothers, four sisters, three in the area.
Patty has come into town to help my grandparents, who are taking turns
being in the hospital for the various ills that plague us as we age.

I want my mother to have the best chance.
Im weighing things, support, distance, support, innovation, support, recovery support.
 
Spaulding may not have beds. I have knots in my stomach.
Im on the phone taking notes and more notes and retrieving info, Im online every spare moment.
I don't even know what I'm looking for anymore. A cure, an answer, a guaranty? Im cracking.
I can feel the tears as i enter the sterile over white hallway in the supposedly reputable Weldon.  Maybe its just the only thing available.

I can't follow what she is saying, Im watching the various injured, peering in rooms
"....Life changing event for everyone involved" Now Im just angry. Im cracking. I need to get out of here now. Im with two aunts, Gayle and a Patty. Gayle does the inquiries, the formalities and we take our fancy, shiny, ugly brochures to go with the heaps of other slick, shiny, ugly brochures
Is this it? Is my mothers fate left to who has the best looking brochure? They all say the same goddam thing.  "Best care", "Innovative Rehab", "Quality Care", "Highly Skilled".

How about human?
Id feel better if one of them said "Fuck the insurance companies! We will do everything in our power to kick your loved ones ass back into the highest gear they are capable of. We will give them every chance at progress and never give up on them. We will not let insurance constraints dictate the quality or length of care...."
Maybe Im getting ahead of myself

Im in one of the too white rooms,
Patty is talking, something about how unhealthy my mom has always been,
how everyone has always worried about her, she is crying, something about us kids,
did we realize how unhealthy she was, worried...

"Do you know why I threw my Mother a surprise 60th? Because I didn't think she would live that long. Of course we knew, we knew better than anyone, better than her maybe.
The worst part is.... Ive been prepared for my mother to drop dead for years, for half my life,
I was ready for a heart attack, I was ready for lung cancer, I was ready for diabetic coma,
I was ready for ....I was not ready for this. This...this I was not prepared for."

My mother can't move her right arm. Even if her leg were not broken, she still would be unable to move it. Its in a giant boot. They won't do surgery on it as planned, due to the stroke.
She can barely speak and when she does the words that escape her mouth confuse her she is angry.
She thinks Im stupid because i don't know what she is trying to tell me and the more I try to understand the more frustrated she is by me.

She has given me the finger numerous times. That she can communicate.

They need to know. My aunts have said they support and are making the decision with me.
It is not all on me. Weldon.  Support.
I tell the social worker who enjoys saying life changing event like its her job.
I want to punch her.

Maybe Im falling apart. Maybe no matter who says its not on me doest understand that It still feels like its my decision and everyone else just supports whatever I say and tells me it will be ok.
I don't want it to be OK. I want it to be better.

My mother didn't take care of her body. My mother threw herself into work. My mother is brilliant.
She took us to the library biweekly growing up, my brother and I would each get few books.
Mom walked out with no less than a dozen. She had to hold the stack she wanted with her chin.

Ive insisted in staying at her apartment. Im staying with the cat. Im staring at my moms spot on the couch. Im alone. I feel alone.  The dining room table is stacked with books, as are the chairs, she exchanges them with so many people i can't keep track.

"If nothing else PLEASE let her be able to read her books, PLEASE" 

Most people don’t believe in miracles. That doesn’t stop them from asking for one when they need it. I am no exception. 

Life Changing Event....continued

I should warn you, this will be disjointed, this will be disorganized.
I have a years worth of writing.
I thought about it. I tried to write as it happened, but it wasn't possible for so many reasons.
I couldn't relive the experience in words on paper after living it daily.  I had no perspective.
Im still not sure I have any.

Im alone in a small waiting room by the ICU there is a family waiting, they look like they live there.
A woman wrapped in blankets has turned the pseudo closet into a bedroom, her computer by her side. She is facing the wall leaning on her pillow watching a movie with one kid slumped over her.
A man is making a call on his cell and speaking with her, another woman and two kids are watching something else on the overhead tv. They are all together. They stare as i enter.

I have stopped crying. Im staring at the door. Im numb.
My 3 aunts and uncle come in and sit with me. the man from the other family has left and returned with a large pizza. I'm hungry. Ive lost track of time and conversation.

glass walls, sliding glass doors, curtains, a nurse desk in the center, the patient rooms dark save the eerie blueish nighttime glow from various bits of hospital equipment and the occasional tv.

Tubes and wires and IVs. did I make the right decision.

My intention is to go to her home. they don't want me to be alone.  I sleep on a couch after being served a lemon drop. work. I won't be going back this week. Maybe next. play it by ear.
they understand. I wish I did.

the days are a blur.  She opens her eyes and looks at me. She is pissed. she is rolling her eyes at the tubes and shaking her head, her eyes welled with tears. Frustration. She doesn't want this.
"Your not on life support mom. If there was a plug to pull, I would pull it"
Would I?

Incoherent. awake. a few more days. thick liquids. Drs. Nurses. Interns. Therapists.
Its the therapists I hate immediately.
Can you tell me what year it is? Is it 1975, 2003 or 2013?
Can you tell me where you were born? How many siblings do you have? How many children?
Where are you? what is that is that a radio a telephone or a television?

Confusion. the answers are so wrong its terrifying. Stop torturing her! I want to scream, Your making it worse!  I have to leave the room. I can no longer remain positive, calm, hopeful.
I don't make it down the hall before Im wracked in the middle of an ICU hallway holding myself up with a wall. barely.

This is good for her, they have to do this to figure out where she is and start to work with her.
My aunt is a nurse. she is very practical. She has a great sense of humor and she will be one of my best supports in the next year. She took me to get my ears pierced on my twelfth birthday against my mothers wishes. We laughed our way through jaws 3d and went strawberry picking when I was little. she removed my stitches from a bike accident, in her kitchen. She is crying as she comforts.

They are torturing her. In the next days I realize it is me that feels tortured. I soon realize I want them to push her harder, suddenly what seemed like torture doesn't seem to be enough. I want them to push her. To fix her. I want her to bounce.

They send her back to 6,  the Neuro floor, back to where we started and worse off than when we left.

Life Changing Event

one year since i have put a pen to paper.
one year since i have done anything remotely related to self care.
Life Changing Event.
one year.
One year ago I first heard the term Life Changing Event.

For weeks i heard it from every doctor and nurse and social worker and therapist.
 I swore I would punch the next person who said those words to me. of course i didn't.

One year ago today I received a call, my mother fell, she broke her leg.
"Don't worry, you shouldn't miss any work for this"

Morphine. she isn't speaking clearly. the nurses say its morphine. she will have a room tonight.
she may need surgery.

I call my mother. incoherent. Not in a morphine way.
My friend had a morphine drip when she was dying of cancer. She didn't sound like this.
Rest Mom, get some sleep. Ill call you in the morning your tired don't try to talk. Incoherent.
Knots in my stomach. why.

Fragility.
She isn't a fragile woman, she is strong. She owns her own business, she is a brilliant accountant with an incredible mind. Work is her life.
She is inherently unhealthy. She is overweight, diabetic, possible heart issues, stressed out of her mind, takes care of everyone else but not herself, fond of saying
"oh don't worry Im fine, everything is good"
She lies about her eating habits, her sugar intake, her personal finances, so you won't worry.

"Im sorry I scared your mother but I really had to, she wasn't taking it seriously, cardiac catheretization is serious, she needed to have it done and she needs to have a little bit of fear put into her... Your mother always bounces. Everytime she is sick she just bounces right back"
BOUNCE
bounce damn it. your supposed to bounce.

Vienna Teng, Hammerstien Ball room. I have no idea who she is. Invited to go with Terry, Chris, Angela...happy to see live music, especially if i have no idea what to expect.
Friday 630, missed call. Leave drink, step outside. Ive been waiting since morning.
something else is going on.
"don't worry, will call when we know more".

Stroke. 28 hrs. first three you can possibly get help. 28.

Work. call work.
Im sobbing on a street corner, sobbing, I can't see the numbers on the phone.
I never realized how much my mother was like my child. How much I felt like I raised her.
Im smoking, chain smoking, Im dialing.

breathe.
concert. dont panic. there is actually nothing you can do right now. nothing but worry.
bounce, she always bounces.

The lights have dimmed, my drink is waiting. The music is ethereal and the tears do not stop just because i am in a public place where I'm supposed to be enjoying myself. I do. The lighting is otherworldly. I enjoy the music, its beautiful, somehow that makes it worse. Would it be different if this was say Pink?  I am worrying about stealing all the napkins on the table to wipe my nose and tears. A hand on my shoulder, Im pulling it together. a hand on my hand, Im falling apart. I don't know if i will ever be able to listen to this music again.
Its beautiful.

Its not as bad as i feared but its bad. right hand not moving, right leg in cast, speech not working but her energy is there, her determination, her strength, her sense of humor.
three aunts and a grandmother I don't recognize because she has taking to wearing a wig since i last saw her are sitting there. we visit. we leave late.

Im back in the morning this will pass, this will get easier, it could be worse, it could be better 28 hours. Its just the morphine.

"This is a life changing event"
fuck you.
"For both of you"
bite me.

She needs a ct scan someone should be here at 5. I will. no problem. its sunday.
 I have coffee. Return at five. Mom is uncomfortable. she keeps slipping in the gurney. Ct scan done.
She comes back out the gurney is tilted so she is on her back and her legs are in the air.
as we return she complains of being uncomfortable she is having a hard time breathing.

Almost there. her room Nurses helping her to bed. Cant breathe. she is crying. can't. can't
She is scratching at the headboard. At the walls She is trying to swing her legs to get up she is fighting two nurses and her physical injuries to breathe.

 Its slow motion but it happens so quickly
 the code is being announced for the respiratory team to her room.
The team is rushing in, several maybe so many people and carts and they have her down on...the bed? a table? The roommate is ushered out people are coming and going I'm invisible. Im trapped by equipment, dread, and a surreal panic that I may be watching my mother die.

"Do we take extreme measures!?"
"YES!YES!" she doesn't want extreme measures, I know this.  if she was on life support she wants the plug pulled, but this is different isn't it?

"we have to intubate her"
I have no idea what that means but i watch. I can't look away.

I call my aunt the nurse. no answer. I call my aunt who panics.
"Dont panic" that never works,
"Mom has been intubated and they are taking her to the ICU"
panic ensues. she will be here in twenty.

A nurse grabs my arm. Im a friend of your aunts I work with her in the ICU, she will be here in twenty minutes. we are going to take good care of your mom.

Tralee, Ireland 2007