Life Changing Event...4

I call my brother and tell him moms been moved.
I give him the address and the phone number.
Ive been here two weeks and I still haven't seen him.
I know he went to the ICU only because there was a card taped to the television.

I collect clothing and sundries for her up to four week stay, depending, of course on insurance.

A stroke patient has the best chance to recover in the first six months.
Four weeks...if we are lucky.
A stroke patient has a better chance at recovery if the stroke is discovered right away.
28 hrs.

I have to leave. I have to work. I have to pay my rent.
I feel like Im abandoning her.
She is getting stronger, she can eat soft solids. She can have thin liquids.
Her therapists seem competent and tough.
She won't be alone.

Three weeks. Ive had a hard time focusing at work. I have one day off a week.
Each monday I get up at 6 and get the car, my moms car, I haven't owned a car for twenty years-
I have miraculously been parking a block from my house to the tune of 330 a month.
Its worth it.

In three weeks I have watched the leaves change, rediscovered the radio, know which songs make me burst into tears for no discernible reason, and realize I may never be comfortable behind the wheel.
I chain smoke as I drive.

I go to her office to check in, I have breakfast with Gayle. I go see mom between therapy appointments. I sit in a few, physical therapy is hard, speech is harder. She can't read.

She calls me Maggie, Im not upset, she calls everyone Maggie.
She soon adds Chris to her repertoire.

We play the twisted game of charades as she tries to tell me something, she is pointing at the closet so i open the door which pisses her off. I close it. She keeps pointing but the words are something like secret code. Eventually I get to the chair. She wants me to pull up a chair so I can sit.

The Nurses love her. The staff drops in just to say hi. Im happy she is here.
The physical therapist Diane has her standing for two minutes. There seems to be hope.

Her office has sent out a letter stating that Joanne will not be available this tax season.
Word is she broke her leg, I have an issue with that since so many of her clientele are friends, people who knew her before she even started her business.  Its bound to get out.

My aunt Mary and i are having dinner with her. she can barely hold her utensil with her left hand.
Its messy and it hurts to watch her struggle. A couple enters so familiar, they bound in
"Hey Joanne! it took us forever to find you! how the heck are you, we called over to the hospital and they told us you moved here..." My mom is thrilled to see Marge and Duke, Ive known them since I was 14? They were my brothers cub scout leaders. They are lovely people but as my mother is talking I see Marge's eyes as the realization slowly seeps in, she looks teary but she still smiles as if she hasn't noticed. Duke keeps talking, he kept the realization a little closer but he is a bit more serious.

Im horrified. There was no way to keep this a secret but now here are these people who thought they were busting in on a friend who broke her leg and here I am wanting to protect her from all of it, from the soup dribbling, the mac and cheese falling off the unstable utensil, the words that won't come out. I don't want them to see her like this. Im not ready. Im not prepared.  I have to fill them in as conversationally as possible, They give me their number and ask to keep them posted.

Ive become an expert at not having a breakdown. I will not cry in front of anyone.
Thats what the car is for.

The insurance will give her one more week. I have to pick a sub acute rehab facility.
No one tells you what that really means is a nursing home.

I have a new decision to make,  
I take more days off work and I go from home to home. Some of the homes have three people per room. Some of them seem like a college and have the entrance paperwork to go along with it and want me to set up long term care as well. Some of them smell like the 1950s, some are decorated like them. Inside I rail against the thought of my mother 63 years old, in a nursing home. I hate this. I couldn't hate it more. My insides are burning.

Its the day before my birthday, Im going to take my first monday off in 5 weeks by off i mean I am going to sit in my apartment. I ordered wood plank flooring that arrived the end of september, I have 9 unopened boxes from home depot in my living room. Im not even sure i can find my living room.

Im sitting with my mother,  my Aunt drops off a birthday party in a bag for me- 2 martini glasses, vodka lime juice, triple sec, cranberry juice, cheese cracker and a bag of peanut butter M&Ms.
Mom wants to know what i got "Its a birthday present from Gayle...My birthday is tomorrow"
"Im going to call you do you know what you have to do?"

I call my mother and she begins beautifully "Happy.... Trails to you until we meet again"
I find it both hilarious and wrenching.

Nov 14th she is moving. everyone at Weldon stops by, as we are leaving my mother wants to see Diane. Diane is a tough woman. She has a gravelly voice and she talks like a drill seargent.
She tears up as she tells her the next time she sees her she wants to see her walking in to visit.

I chose Mount Saint Vincent for the Therapists. of all the places we saw they seemed enthusiastic competent, sure of themselves and of being able to make progress. They seemed the most likely to push her limits and work with her personality.  Several people recommended the place, I know the social worker, I know the woman who runs it, she will be taken care of....

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