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My Mom

by Izzy Fri Apr 16th, 2010 at 09:04:31 PM EST

I don't think I've cried so much my entire life put together as I have in the past 3 1/2 weeks.  Tears of sadness, tears of loss, tears of helplessness and exhaustion and every variety of grief.  Right now, I'm crying tears of pure rage.

My mother, my dear, sweet, helpless mother is right now curled in a ball in a bed in a nursing home 400 miles away from me, crying please, please, please over and over.

My step-dad is there with her.  And his daughter-in-law.  His son is driving to their home to retrieve my step-dad's nitroglycerin medicine because he's having chest pains.  The whole family is distraught and overwhelmed.  

And in the midst of the frantic phone calls about what to do and what's happening and what can possibly be done, I had the stunning realization that we're all frantically hoping that my mother's latest test results show something is wrong.


This.  This completely insane wishing of a further medical complication on a woman who's been barely hanging on to life for the past 3 1/2 weeks.  Wishing another problem on this small, sweet woman I was told wasn't going to make it, yet somehow against all the odds has.  So far.  I don't even know what to call this.

When I realize that we're wishing this, hoping for it, discussing it, I suddenly can't breathe.  Something is building in me, breaking, and I can't tell if it's laughter or tears.  There's a split second when it somehow feels like both.  Then the tears come and with them, the rage.

Only in a completely broken, cruel, callous system -- calling it evil would not be going too far -- only here in the richest nation with the "best healthcare" would a bereft family find itself hoping something's wrong.  Something, anything, we can show to the insurance company to get them to allow her back into the hospital.

That's how we got in this situation, this insane fucking conversation.  Technically, it isn't even our hopes that are twisted, it's the system, the insurance industry.  If you're trying to deal with them, get anything done, then insanity is sometimes the only logical response.

I'm pretty sure I wasn't insane 3 1/2 weeks ago, on March 21st.  Certainly not to the point of wishing  a complication on my gravely ill mother.  In fact, I'd been spending the day watching the HCR House Vote on c-span and having quite a lovely time with my beloved.  Since there's only so many times you can yell "liar!" at the tv before it becomes tedious, we'd advanced to the fun portion of the event, critiquing ties and hair and making random cruel remarks about people's appearance in general.

So I was just trying to think of something witty to say about that orange fuck, Boehner, when the phone rang.  It was my step-dad.  He was in the ER with my mom.  Severe abdominal cramping, calling 911, the ambulance, it had only been 40 minutes since this all started.  "We were just sitting there talking" he kept saying.

I wasn't freaked or anything at that point, but I was concerned.  Something made me ask if I could talk to her for a sec.  She came on and I could hear the pain in her voice.  "Hi, Mom, you just hang in there, you'll be all right, try not to worry"  "Oh, thanks, honey" she says, "I'm sorry, I can't talk."  "But, wait!" I say "I love you, mom."  She says she knows, honey and we hang up.

Now I do have a bad feeling about this.  I've never known my mother to want to get off the phone, for any reason.  An hour later I get the call that they're taking her to emergency surgery.  Maybe a blockage.  I spend the next two hours telling myself I'm probably over-reacting, but checking on flights anyway.  My dad calls sounding weary and stunned.  Mom's bowel had ruptured, they installed a colostomy.  She's pretty sick in ICU where she'll have to stay for a couple of days.  He says there's something about a 48 hour window to make sure nothing real bad happens.  It's his impression we just need to get her through that.

I assure him I'll be there on the first flight I can get out of Los Angeles, which turns out to be early the next morning.  I arrive, greeted by rain and my worried-looking step-brother.  There's no news, really.  He and his wife, my sister-in-law, have been up most of the night.  Everyone's relieved I'm there.  This all feels too big for our family.  The three of them feel more solid now that I'm there.

I'm supposed to be the strong one.  The one who doesn't take any shit, who gets things done.  The one the family tells funny stories about at holidays.  How I scared the insurance company or rattled the doctor or told off this or that person in authority.  I'm the one everyone calls when they need things sorted.

I'm this way because I am my mother's daughter.  Not because I'm like her, but because she was considered the soft one in a family  where soft is used as an insult.  That was her mother's family, my grandmother's.  Both my mom and I were raised by this hard, Scottish woman and her sisters, and they broke my sweet mother.  She never did 'toughen up' as they wanted, instead becoming increasingly unable to cope.  

When I came along, I fought her fights and tried to cope for her, becoming her protector.  I had a rough childhood and my mother was absent for much of it, which people often think I should resent, but I never once blamed her and I credit her with being the only thing that kept me human in that environment -- no matter her failings, she loved me unconditionally.  No matter what happened or what I did, I had one constant -- I knew my mother loved me.

But no matter how strong or tough or informed or brave you think you are, you're never prepared for some things.  For me, that was seeing my mother in the ICU.  My brother had tried to warn me so I'd be girded, but it was still too much.  She was on a ventilator, surrounded by machines, being pumped with fluids to keep her blood-pressure up so she looked inflated, like a balloon.  I tried to stay brave, she was watching me and I managed to look in her eyes, stroke her forehead, and tell her I loved her and how strong and brave she was and that it would be alright.

The words were like ash in my mouth.  I had to run, to flee, escape my mother's eyes so she wouldn't see the primal fear in me.  The choking sobs that were trying to escape.  This was so far from alright or ok or any acceptable anything in my small, human experience.  This was a horror show.  This was hell.

It went that way all day.  Us taking turns being with her while the others were outside, crying and decompressing and gathering our strength for our next turn in the room.  I kept composing myself and then trying to ask questions, get answers -- how had this happened?  why did the bowel rupture? -- these questions were being treated like they were beside the point.  I finally got her doctor on the phone in the late afternoon.  He was brutal.  

When I told him our understanding of what was going on, he interrupted me and said my dad had gotten it wrong.  That they weren't waiting to see if something bad would happen, that the worst had happened.  She was in severe septic shock and was not expected to survive.  That what usually happened in cases this bad was that the organs would start shutting down in about 48 hours.  Did I have any other questions.

I didn't.  I couldn't think.  I could barely breathe.  I felt like I'd been punched, or like a marionette whose strings had just been cut.  I crumpled then.  I don't think I've been thinking since.  I still don't have any questions, not any that seem important, whose answers would help.

It's been a blur since.  She's defied all the odds so far, my soft mom.  She's been strong.  In the first week, my son was flown down from Seattle, then went home.  My partner drove up to comfort me and I eventually went back home to LA with him for a couple of days, to pack some more clothes and get my life in some sort of order before heading back.  

Somewhere in there, the 48 hours came and went and, miraculously, my mother's organs did not shut down.  Slowly, they started to work.  And somewhere in those first days, my mother slipped away somewhere, perhaps into her mind, her eyes opening, but no longer seeing.  Three times one of her pupils became fixed and dilated, then corrected itself in 24 hours.  They didn't know, perhaps these were strokes.  We were told she might be able to hear and were told it might comfort her to hear our voices, so we talked.  

I told her of all the happenings with the family, of all the phone calls with relatives.  Of the love sent from England and how Fiona was finally divorcing that jerk and the love sent from the wacky missionary cousins whose whole church was now praying, quite possibly handling snakes, for her.  Of our monk friend who had everyone chanting.  Of the problems that would ensue when she pulled through and who would get the credit?  

I talked and talked until I couldn't find more words and then I sang.  I sang all the songs she sang me as a child, and all the songs my Scottish grandmother sang to us both.  I read her the poetry of Robert Burns, her favorite, and somehow the first week slipped into the next, filled with the laments and cadences of the auld country and the kindly voice of Burns reaching through the centuries, comforting us both, and providing me solace.

And so it goes till Good Friday, almost 3 weeks in, when she opened her eyes and told the nurse she was pretty.  The next day, she was transferred out of ICU to a regular hospital room.  We'd been living in the moment, under siege.  Keeping track of tests and heart rates and fluid output.  The horror of the two weeks of life support, the feeling of hope and relief when she was weaned off the ventilator, the crushing weight of emotion when we were asked our wishes regarding a DNR if she had to be but back on.  The small hope bought on by her transfer, her speaking.

But, oh dear god, how incredibly weak she'd become in those weeks.  When she got her blood pressure back and they stopped pumping her up with fluids, how shrunken she was.  Her bones showing, muscles flaccid, her hands curled in.  I wept over those hands, so warm and small, as delicate and fragile as a bird, those hands that had tended me as a child, now nestled in mine as I tried to soothe them with lotion and get them to uncurl.

I stayed with her day and night.  I brought her tulips and daffodils, her favorites.  She wasn't interested.  My worries turned from her body to her brain.  She speaks sometimes, but not others.  She cries a lot.  Her memory comes and goes and has huge holes at best.  She has no sense of time, no continuity.  But once in awhile she's her -- making jokes, asking after family, shocking me one day with "do I remember you saying Fiona was finally divorcing that jerk?"

Then I came down with the flu.  Then I pushed myself too quick and it went into bronchitis.  Knowing I was no good to anyone sick, I booked a flight home to recover a few days and plan to return with the car.  And that's how I find myself helpless and far away.  Since I left, the week has been filled with frantic phone calls.  Filled with arguing with a new 'hospitalist' doctor assigned to my mother.  Filled with me arguing against her being sent to a nursing home.  How can someone so sick, someone who can't communicate or feed herself or push a button, someone who still has an open wound and is unstable, be well enough for a nursing home?  I wore myself out tending her in the hospital because the nursing wasn't sufficient.  How could this be?

We all strenuously objected.  Against our wishes, she was transferred Wednesday evening.  My dad and family felt helpless, not wanting to leave her 'stranded' there, yet having to.  Then I spoke with the nursing home doctor, who said she was 'surprised' my mother was sent there in that condition, but that they couldn't just send her back without a new 'incident' as a rationale for the insurance.

She was rapidly declining in there -- they aren't authorized to give her the morphine she'd been on and she was in pain.  She became rapidly less lucid until she was curled in the ball crying "please."  Her colostomy has stopped working.  They do an abdominal scan and tell us if it shows anything abnormal at all they can take her back to the hospital, back to where she'll be more comfortable, more tended to, and have her pain managed.

And this is how we find ourselves insane.  Wishing a complication on this poor woman who's had enough.  And since I started to write this last night, the night has come and gone.  The test showed nothing, but my mother became so critical at 2 in the morning that the nursing home called an ambulance.  The hospital immediately got her pain under control.  They ran more sophisticated tests and found an abdominal abscess.  She is currently back, not only in the hospital she was prematurely discharged from, but in the ICU.

 She is more lucid again, and talking, and she is telling everyone her one clear memory of last night -- she remembers her 'escape' from "that place."  She remembers running to the ambulance, running on her 'own legs,' refusing to acknowledge her condition, that she's still too weak to sit up.  

And I'm glad she's taking credit.  I'm glad she's seeing herself as strong and brave and capable of running when she needs to.  I'm glad she's fighting.  Some fights you have to have, her fight for her life being one of them.  And we, her family, are in this fight, too, it's just horrific that we have to also fight the insurance industry at the same time.  But as soon as I'm well enough to travel, I hope she'll still be well enough to feel me hold her hand, and hear me when I reassure her I'm right there with her and that I believe her when she says she ran on her own legs.  I'll give her full credit for her courage, her heart, her brave escape.  

And I'll tell her that, somehow, we'll all keep fighting.  She's strong and I'll lend her whatever strength I have and we'll both fight for her life, her health.  But I'll also be fighting on another, unnecessary, front, to force people to care for her the way they should.  And, hopefully, we'll all have the strength to see those fights through to wherever they take us.

But Mousie, thou are no alane
In proving foresight may be vain;
The best laid schemes o' Mice an' Men
Gang aft agley,
An' leave us nought but grief an' pain,
For promised joy

Still, thou art blest, compared wi' me!
The present only toucheth thee:
But Och! I backward cast my e'e
On prospects drear
And forward, tho I canna see,
I guess and fear

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Sorry if this is disjointed, I just wanted to write it off my chest and, also, say thank you to all my ET friends -- I've gotten a lot of off-blog support from you guys and it's helped tremendously.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes
by Izzy (izzy at eurotrib dot com) on Fri Apr 16th, 2010 at 09:06:17 PM EST
No words are adequate.

"The future is already here -- it's just not very evenly distributed" William Gibson
by ChrisCook (cojockathotmaildotcom) on Fri Apr 16th, 2010 at 10:06:29 PM EST
[ Parent ]
Thanks, Chris.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes
by Izzy (izzy at eurotrib dot com) on Fri Apr 16th, 2010 at 10:14:30 PM EST
[ Parent ]
Oh Izzy.

{{{{hugs}}}}
l
You're right--the US system is callous and cruel and totally nasty. I'm so sorry your mom and you and your family have to go through this. In the absence of being able to do anything more tangible, I will keep you in thoughts and prayers.

by Mnemosyne on Sat Apr 17th, 2010 at 09:17:48 PM EST
[ Parent ]
What I want to do is scream with rage but that won't do anything.

Hang in there Izzy.  Damned if I know what I CAN do but let me know if I can do anything.  

She believed in nothing; only her skepticism kept her from being an atheist. -- Jean-Paul Sartre

by ATinNM on Fri Apr 16th, 2010 at 11:48:00 PM EST
Thanks, AT - kind wishes from friends are the best thing any of us can do.  I appreciate it.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes
by Izzy (izzy at eurotrib dot com) on Sat Apr 17th, 2010 at 12:09:19 AM EST
[ Parent ]
If we could do anything, in whatever way... Apart from telling you how overwhelming it is reading this thousands of miles away, and how it's hard to see the screen. Thinking of you, Izzy, and your family. Hold on.
by afew (afew(a in a circle)eurotrib_dot_com) on Sat Apr 17th, 2010 at 01:32:28 AM EST
Thanks, afew -- I'm holding on.  I guess we'll all make it through somehow, but it's a sair fecht, as my gran would say.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes
by Izzy (izzy at eurotrib dot com) on Sat Apr 17th, 2010 at 02:01:07 AM EST
[ Parent ]
Oh, Izzy, I am so sorry and I just don't know what to say. This is so unbelievable and inhumane. All I can think of doing is to keep you and your family in my thoughts and hope with you that all will turn out well.
by Fran on Sat Apr 17th, 2010 at 02:58:32 AM EST
Thanks, Fran.  I don't think there anything anyone can say, really, but I so appreciated the kind thoughts sent this way.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes
by Izzy (izzy at eurotrib dot com) on Sat Apr 17th, 2010 at 03:07:02 AM EST
[ Parent ]
I know it's not any consolation but it's only marginally better in Europe. My own mother was in a private clinic for 2 weeks and when her condition deteriorated to the point where the medical team there gave up and said "she needs a multidisciplinary [i.e., public] hospital" the insurance company denied the ambulance.

The brainless should not be in banking -- Willem Buiter
by Migeru (migeru at eurotrib dot com) on Sat Apr 17th, 2010 at 03:19:27 AM EST
You know my thoughts are with you.
by In Wales (inwales aaat eurotrib.com) on Sat Apr 17th, 2010 at 03:52:56 AM EST
Yes, I do know.  And thanks for being there, keeping me company, in my crumpled starbucks moments.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes
by Izzy (izzy at eurotrib dot com) on Sat Apr 17th, 2010 at 04:01:18 AM EST
[ Parent ]
good god what a hellish situation, my heart goes out to her and all your family, especially you Izzy.

it's astonishing to think how callous people can be. don't they teach any compassion to doctors tasked with breaking such awful news?

strong waves of support flowing your way. so glad you can vent here with us... try to let go and trust things will get better, tho i know how difficult that can be, so easy to say, so hard to live through.

{{{{{{{Izzy}}}}}}}

'The history of public debt is full of irony. It rarely follows our ideas of order and justice.' Thomas Piketty

by melo (melometa4(at)gmail.com) on Sat Apr 17th, 2010 at 04:29:22 AM EST
[ Parent ]
You know, honestly I think some of the very best doctors are complete assholes, and overall, I think that's a good thing, given the quick life or death decisions they have to make.  And this doc I talked to on the phone seems to be one of them (he's Irish, btw) -- exceptionally good at what he does, but zero people skills.  I ended up sorta liking him, but I've been telling everyone docs like him should have an assigned spokesperson to deal with the families.

The day she talked, I walked up to him in the ICU and said - so, what do you think now?  He hastened to assure me she was NOT out of the woods but added 'she has, however, defied considerable odds.'  When I reported this to the nurses, they were all 'you got him to say that? wow!'  I deduced this was his version of throwing a parade.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes

by Izzy (izzy at eurotrib dot com) on Sat Apr 17th, 2010 at 05:52:19 PM EST
[ Parent ]
Yeah, if there's going to be somebody messing with my innards I think I'd probably prefer she be a hyper-competent asshole than  nice but incompetent. Good people skills and high-competence in technical fields don't seem to go together often. Which is fine, so long as the doctor is aware of their crappy people skills. People skills is what the nurses should be for, among other things. (And our "favorite" ICU nurse when my father was dying was a guy.)
by Colman (colman at eurotrib.com) on Sun Apr 18th, 2010 at 06:41:36 AM EST
[ Parent ]
Echoing all the strong wishes being sent your way.  If it's any consolation, Izzy...

fine writing.

"Life shrinks or expands in proportion to one's courage." - Anaïs Nin

by Crazy Horse on Sat Apr 17th, 2010 at 04:25:26 AM EST
Well, it's not exactly 'consolation,' but nice to know my stream-of-consciousness word-purge was understandable.  After hitting post, it wouldn't have surprised me to have gotten a gently-worded email from Colman or Afew asking if there was a reason I'd just posted a gibberish diary.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes
by Izzy (izzy at eurotrib dot com) on Sat Apr 17th, 2010 at 05:56:40 PM EST
[ Parent ]
I'm so sorry, Izzy.  It was painful to read about your mother's ordeal, but inspiring to read how strong she and you have been.  Wishing you both and your family continued strength and courage.

The point is not to be right, but to get to right.
by marco on Sat Apr 17th, 2010 at 04:26:20 AM EST
It is said that great pain makes for great writing; this diary is an example.

Bon courage, Izzy.

Hey, Grandma Moses started late!

by LEP on Sat Apr 17th, 2010 at 05:14:16 AM EST
I'm so sorry to hear that Izzy.

Be nice to America. Or we'll bring democracy to your country.
by Drew J Jones (pedobear@pennstatefootball.com) on Sat Apr 17th, 2010 at 06:43:24 AM EST
Like Chris, I have no words for this, no sweet phrase. just a desperate wish that I could reach out to you and give you a hug of human sharing and compassion.

((((H U G))))

keep to the Fen Causeway

by Helen (lareinagal at yahoo dot co dot uk) on Sat Apr 17th, 2010 at 06:51:56 AM EST
All my thoughts Izz are with you and all your family.

What's a "hospitalist" doctor? and how can he make that sort of decision without being struck off the register?

Any idiot can face a crisis - it's day to day living that wears you out.

by ceebs (ceebs (at) eurotrib (dot) com) on Sat Apr 17th, 2010 at 07:01:38 AM EST
What's a "hospitalist" doctor? and how can he make that sort of decision without being struck off the register?

An insurance gatekeeper?

The brainless should not be in banking -- Willem Buiter

by Migeru (migeru at eurotrib dot com) on Sat Apr 17th, 2010 at 07:14:30 AM EST
[ Parent ]
The first time I'd heard of one was when my partner was in the hospital last year, and he was indeed the 'gatekeeper' -- he contracted with the insurance company to screen and follow all admits from that plan.  No one from that plan could be admitted without the hospital calling this guy who, we had first assumed was merely the hospital's attending physician.

He was also trying to rush my partner out of the hospital, but I'd obtained enough gossip about him from the staff to call him on it.  He went nuts, screaming that he was "private practice" and not the "gatekeeper," but after that he backed down completely and did an about face, ordering my partner to stay in.

When I go back, I fully intend on ascertaining who, exactly, this hospitalist dude works for.  He's given the rest of them a bad name -- the other docs and nurses have been nothing but professional and, for the most part, kind.  The ICU nurses are downright saints.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes

by Izzy (izzy at eurotrib dot com) on Sat Apr 17th, 2010 at 06:02:20 PM EST
[ Parent ]
See Wikipedia. The article seems to imply the concept exists only in the US, though "this type of medical practice has extended beyond the US into Canada".

The brainless should not be in banking -- Willem Buiter
by Migeru (migeru at eurotrib dot com) on Sat Apr 17th, 2010 at 07:16:41 AM EST
[ Parent ]
I'm very, very sorry, Izzy.
by ThatBritGuy (thatbritguy (at) googlemail.com) on Sat Apr 17th, 2010 at 07:27:53 AM EST
Izzy, I can't find the words to express what I feel, a mix of rage and sympathy...

I am with you and your family.


"Ce qui vient au monde pour ne rien troubler ne mérite ni égards ni patience." René Char

by Melanchthon on Sat Apr 17th, 2010 at 09:33:17 AM EST
(((Izzy)))

Damn hospitals.

by Maryb2004 on Sat Apr 17th, 2010 at 11:19:59 AM EST
Be strong, lean on your friends. They want you to.

We're currently monitoring from across the continent a friend with bacterial meningitis/ compromised immune system from previous leukemia, trying to support the family.

It's easy to turn against the medical staff, but they're doing the best they can, I'm sure. You'll always get more answers when you appear as informed, but deferential. I try to inject keywords as questions, with the grammatical structure to indicate they've likely though of that. No need to press for answers, I find.

Best of luck.

Ormond in California.

Align culture with our nature. Ot else!

by ormondotvos (ormond.otvosnospamgmialcon) on Sat Apr 17th, 2010 at 04:34:45 PM EST
Thanks for the kind words and excellent advice.  I agree with it all (and elaborate a bit more about the staff in my comments upthread).  I don't have any friends in the exact city my mom's in, but my long distance friends have been hugely supportive via phone and online, and I've had two sets of friends, one from northern nevada and one from the bay area, actually travel over just to take me out to eat and provide me some company.  I'm truly lucky.

You also have all my best wishes for your friend's recovery.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes

by Izzy (izzy at eurotrib dot com) on Sat Apr 17th, 2010 at 06:22:00 PM EST
[ Parent ]
I'm very sorry to hear. Sending thoughts of compassion and kindness your way. My mom and I traveled that road a little over a year ago. I'm grateful I could be there to hold her hand and give comfort as she had given me so many times when I was small.

"Leadership passes into empire; empire begets insolence; insolence brings ruin." William Carlos Williams
by Indianadem on Sun Apr 18th, 2010 at 12:02:01 AM EST
It is horribly, tragically unfair that you must deal with such gross callousness on top of such a wrenching crisis.

I wish you all the strength and health you need to see this through. Hang in there!

The fact is that what we're experiencing right now is a top-down disaster. -Paul Krugman

by dvx (dvx.clt ät gmail dotcom) on Sun Apr 18th, 2010 at 09:23:39 AM EST
Incredibly sad story Izzy (I am in tears), too typical in our society today.

Yet, human kindness and empathy remains to sustain through such times.  Feel the love and resist being consumed by bitterness. Peace be with you.

I can swear there ain't no heaven but I pray there ain't no hell. _ Blood Sweat & Tears

by Gringo (stargazing camel at aoldotcom) on Sun Apr 18th, 2010 at 11:02:39 AM EST
Oh Izzy. I'm so sorry. Thinking of you, all the time. Hang in there.
by the stormy present (stormypresent aaaaaaat gmail etc) on Sun Apr 18th, 2010 at 02:44:25 PM EST
Izzy, all the strength and clarity you have is backed up but all ET, when you think you run out! I hope your Mom will stabilize soon and I am sending all the energy I can.  

Big hug!

Our knowledge has surpassed our wisdom. -Charu Saxena.

by metavision on Sun Apr 18th, 2010 at 07:26:53 PM EST
Puff...joer

I therefore claim to show, not how men think in myths, but how myths operate in men's minds without their being aware of the fact. Levi-Strauss, Claude
by kcurie on Mon Apr 19th, 2010 at 01:09:06 PM EST


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