Burnout Factor

Me & my Aunt Eva, 1992

It has been days since I have written. I am not wanting to write; and I ALWAYS want to write.

I even missed my Hopeful Parents day on Monday (I will somehow write that post and put it up tomorrow, better late than never).

It's not just the busyness. I am always busy.

I am just seriously tired of what is running around on the hamster wheel of my brain right now.

I am tired of death and autism and special needs and medications and doctors and insurance companies and death and care-taking and dealing with medical establishments and death and clutter and real estate and paperwork and death and money (the lack thereof) and death.

I have had too many conversations about cemeteries and plots, about hospice protocols, about funerals.

My Aunt Eva is still with us for now, in that childlike state some people enter in the process of dying.

Annette says she has moments of playfulness and energy when she will awaken and smile beamingly at everyone gathered around her, lift her hands up by her face at wiggle her fingers, the wordless way one plays with a baby. And yet, she is the baby this time.

She speaks rarely, and sometimes in German, her first language. When Annette shared this I remembered something my husband had told me, of how his father, slowly dying in their apartment when he was a teenager, babbled away in the Yiddish of his childhood for the last few weeks of his life.

I'll be seeing Eva today. Saying hello and another possible goodbye. I'll be able to manage a long visit with my mother, too, as Ethan is off on a three-day camping trip, and thus I don't have to rush back to the city to pick him up at 4.

On Tuesday, driving out to Long Island, what is usually a fast, against the flow of traffic trip ground to a screeching grinding halt early on, in Queens. I figured there had to have been an accident, and there were, in fact, TWO on the Grand Central Parkway at the same time.

Eastbound, in my direction, it was just a minor finder bender, but a little further on, Westbound, was a major conflagration. Not just due to rubbernecking, as there was an emergency vehicle in the left lane of our direction, I passed so slowly that I looked over to the other side, just to see what the hell was going on that could snarl traffic in both directions so thoroughly.

And in that moment I saw a white sheet being lifted up, an outflopped arm - tanned, male, short sleeve blue uniform shirt - being placed back within, once again enshrouded.

I couldn't unsee it. It played over and over in my mind. A fatal accident. I tried not to take it as an omen. I was ever glad that I was alone, that the boys weren't with me, that questions did not need to be asked and answered.

Ethan is already a little over curious about car accidents, thrilled with the tale I told him of the near disastrous crash Dan and I were in on our honeymoon.

I have not yet spun for him the tale of the taxi cab fatality I witnessed, was a part of, one morning newly pregnant with him and his twin.

But it came back to mind a lot Tuesday, one tragically dead body calling up the ghost of another.

And really, could everyone just stop dying for a while. I want to write, think about something else for a change.

On Tuesday I made my mother promise to stick around until her 90th birthday in September. "We'll celebrate together!" I'd told her, as Annette, Trina, Mom and I munched on cookies from the Hungarian Pastry Shop I'd brought out with me.

"I'm planning to live to 100!" she'd reassured me.

A promise I hope she''ll keep.

Random thoughts of a tired sandwich-generation mother on a Saturday morning

It's Saturday, and I've been writing posts in my head, scribbling cryptic notes about them into my phone since Wednesday. But still. Nothing. I don't have the concentration, the focus.

When I have a spare five minutes I play word games with friends on my computer or my phone. I know these are "time wasters" and I have none to spare, yet need the mindless soothing they provide. challenges with quick and clear outcomes (I won! I lost!) resolved in minutes, as opposed to weeks, months, lifetimes.

Jake woke up at 5 AM today again. He says it's "bad dreams" but I have no idea if this is really about dreams or if that's just a phrase he's picked up from TV/books/movies and finds convenient.

He won't elaborate. Neither is he capable of getting back to sleep.

So another night's sleep shot to hell for me.

It's supposed to be the hottest day of the year today. Triple digits.

We're supposed to be going out to the Island, me and the boys, see my mother, my cousin Annette and niece Katrina; find a body of water to throw our overheated bodies into.

But if I don't get a bit more sleep I'll be too tired to safely drive.

And now it's 7 and Ethan has awakened, also too early.

They will probably fall asleep in the car. Which is OK. (As long as I don't.)

Except it will probably be five minutes before we arrive at Mom's rehab center. So I'll be on the horns of a dilemma: drive around aimlessly to let them sleep a bit longer, eating up fossil fuels and making my mother wait for our visit, or wake them up after a mere cat nap and carry on.

How I wish I could declare today a lazy-stay-home-all-day-electronics day. But we need to see my mother, my cousins, and most importantly my Aunt Eva.

She is come home from the hospital now, under hospice care. All she really wants now is to be left alone. Although vastly more comfortable home than in the hospital, everything is still all too much.

Touch hurts, bothers her.

She has stopped eating, will take water in small sips from a spoon.

This may change. But if it doesn't...



I am sure she has no interest in seeing me. But I need to see her.

To say goodbye. To be there for my cousins and my uncle (who himself just developed walking pneumonia, being there for everyone else and neglecting the care of his own self).

All I want is to lie in front of an air conditioner and sleep.

Wake up and eat blueberries with sour cream; something I thought was disgusting as a kid, but now invokes my mother in the summer so strongly I feel she is at my side, lifting my spoon to her own mouth as I sit and take in the light and the dark, the sour and the sweet. Together.

As life often presents it.

Happy New Year (from George, Christopher, Gracie and Jake)

Happy New Year, everyone!!!!

2010 bit our butts big time.

(Was reminded of just how much when I combed through the year for my 2010 "best of" wrap-up post)

(Would everybody please just stop dying, already?)

Here's to a terrific 2011 for one and all!

(Raising my virtual glass of champagne to clink with you all.)

(And as long as it's virtual? Make it Pol Roget Cuvée Sir Winston Churchill, please.)

(In actuality, we had Martinelli Sparkling Cider.)

(And it was just me and the husband playing Monopoly with a very hyper, over-tired Ethan at the stroke of midnight.  Jake had fallen dead asleep on the rocking chair at 10 PM, and I'd been able to sleep-walk him to bed.)

(Ethan was winning, of course.)

(And all sugared up.)

(It was so very fun to put him to bed at 12:30.)

(The words "please, darling, just shut up and go to sleep" might have crossed my lips at about 12:55)

(But I would never say that, so it must have been more like: "If you don't stop giggling and calling me George, you will lose all screen time for the rest of the weekend.  I love you, now go to sleep.")

(I might have told him if he continued to call me "George" and his father "Christopher" I was going to start calling him "Gracie."  This might have been unwise, as it provoked yet another giggling fit, even though the reference was lost on him.)

(Ethan is going through a bit of a "class clown" phase.  Please let it just be a phase.)

(Ethan, balancing on the knife edge of funny/annoying ALWAYS pushes it too far and tips into pure annoyance.)

(He finally fell asleep.)

(If Jacob wakes him up early - as he inevitably does - Ethan is going to be just so much *fun* in the morning.)

(Sigh)

Say Goodnight, Gracie.

Goodnight.

And Happy New Year, my friends, Happy New Year to you all.


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Let's Go to the Hop!

(You might want to read my added comment about the inappropriately upbeat tone of this post's title BEFORE you read this post.  Just saying.)

OK, I'm here at the Special Needs Blog Hop.  And the prompt for this week is...
Share a Thanksgiving Memory

And yes it's late into the evening, almost Friday, and still, I have not been able to tackle this one.  I am rarely at a loss for words, but in this case?  It's hard for me to think about Thanksgiving.

Not because of my children, they are generally reasonably well behaved on Thanksgiving (well, as long as there is a television in the house). 

It's my Dad.

This will be the first Thanksgiving without him, our first without my Dad and my Mother-in-law.

Ethan is mad about this.  "Why did Grandma and Grandpa have to die in the same year?  I lost TWO grandparents in ONE year, it's just not fair!  I used to have THREE grandparents and now all I have left is one Grandmother."

And Jacob?  I don't know how he has processed these deaths.  I'm guessing not that much, because he will still ask to "Go see Grandma and Grandpa?"  And he still calls it "Grandma and Grandpa's" house.  Death being such an abstract concept.  (And abstract being so hard for his autistic, language-processing challenged brain.)

Abstract in one way, thudingly concrete in others.

Last year my father was at our apartment for Thanksgiving, this year he is gone forever.

And also last year?  Thanksgiving?  Was the last time he was ever in our apartment, at all.

To tell the truth, even then he was barely there.

Ever to be counted on for a post-dinner couch nap, this time Dad slept on the sofa the whole time.  We could not get him to come to the table.  He barely ate, a man who usually loved him some turkey.  He only roused himself for a healthy big slice of Pumkin Pie.

"He's diabetic" my mother fretted,  "Should he have pie?"

I did not know how to kindly say what I saw and knew, that he was so clearly frail and failing, with such little time left, what did it matter?  It gave him pleasure.  It was what he hungered for.  Let him have pie.

Two months earlier I would have jumped in all motherly and whittled down his slice to a sliver, stood over him and pecked at him until he ate some turkey with trimmings.  Something green, too.  But there was still a man to feed in September.  By November, a completely different story.

And indeed, less than two weeks later we stepped into the serious end game.

So right now my Thanksgiving memories?  All the happy ones of recent years past with this, my chosen family and way back when, with my family of origin, the aunts, and uncle, cousins tumbling together in joy?

Shadowed by the terrible losses of this terrible year.

I have done very little thinking and planning for Thanksgiving this year.  And it's good that there is very little I have to do.  Bringing wine and my mother to my husband's family's house in Westchester (and, as always, GF/CF goodies for Jacob) is about the limit of what I can manage.

We will eat and drink and talk and laugh, but it will be hard to find true merriment in my heart.  I will celebrate what remains, I will let the warmth and light of family wash over me.  But I know I will spend some moments staring out through the big windows into the vast dark, saying goodbye once again to my father, to Blanche.

Our family has grown both smaller and larger this year, the wheel of life has churned on, spinning wildly.  It will spin on ever still, and I am still feeling dizzy.

I will stand still for a moment at Thanksgiving this year, remembering the last: my father in our entrance hall holding my warm hands in his cool, papery, trembling ones.  He thanked me for dinner, told me how much he loved me (as ever he did), remarked on how nicely Jacob was coming along.  I may have reminded him that I would be taking him to the doctor the following week, that appointment that set the final tumble in motion.

We had borrowed a wheelchair from their assisted living facility to get my father over to our place, so I towered over him a bit.   I kissed the top of his head as I took my parents down the elevator to catch their ride.   Dad's last exit from my home.

So while many of us find Thanksgiving to be a day tinged with a drop of melancholy, a tiny hint of mourning for the "perfect" family we had wished for mixed in with celebrating the wonderful, special family we have, I will be doing some actual mourning.  Ticking off another "first" in my year of sad firsts.

And I will raise a glass of red wine (the nice Saint-Joseph I'll be bringing) to my Dad.  And maybe (if the kids let me) take a little couch nap in his memory.

Wishing everyone an enjoyable (and not too frazzling) Thanksgiving.

And?  If you're in the mood?  Hop in and tell your story...

Wordless Wednesday: My Aunt Marilyn

Mom & Aunt Marilyn

Yesterday I wrote a post about bringing my mother to visit her baby sister, my Aunt Marilyn, who is in the hospital, possibly dying.

This 80 year-old, ravaged body once housed a beautiful young woman.

Her huge, deep, brown eyes have always been capable of piercing through to the soul.

Sorry it's not an adorable picture of my children this week, but this is my life right now.


I’m linking up to Wordless Wednesday at Angry Julie Monday.
I'm also linked to Special Exposure Wednesday at 5 Minutes for Special Needs.

Here We Go Again

I was going to call this post: "Old People Dying, Round 3" but realized that sounded a bit too... callous? direct? slightly deranged?  I am actually none of these things (well, maybe the deranged label fits a bit).

I am just... weary, resigned, engaging in a little gallows humor to lighten the load; sick of the dying and the caring for the dying, which seems to endlessly go on and on and on this year.

So, here we go again... and no, thank goodness, it is NOT my mother.  That much I could not take.  If it were my Mom this time I would not be blogging, I would be lying curled up in a fetal position on the floor blubbering away.

It is, however, my mother's (80 year-old) baby sister, my Aunt Marilyn.

Mom & her sister, my Aunt Marilyn

Haven't heard of her?  Not surprising, no one has.  My children have never heard of her, let alone met her.  My husband has heard of her, but again, they have never met.  I myself have not seen my Aunt in 8? 10? a dozen years?   Really, it was some time ago, I have lost the count, and then for quite a number of years we lost my Aunt.

And how and why could a family member get so lost?   Well, you see, for as long as I can remember Aunt Marilyn has been lost to herself, too, in one way or another.

Lost how?  Well, let's just say that when my cousins and I refer to her as "crazy Aunt Marilyn" we don't mean wild and fun.  And we're not being cruel, just realistic.  Aunt Marilyn is deeply mentally ill, and has been for as long as we have known her. 

Crazy / mentally ill how?  Good question.  Aunt Marilyn has had so many diagnoses in her long life, but the ones that seem to stick are some combination of severe bi-polar and paranoid schizophrenia.  She lost the family gene pool when it comes to brain chemistry.

My grandfather, her father, suffered in much the same way at the end of his life, the last 10 years of which he spent in a state mental institution. At the time psychiatry and diagnosis were not what they are now.  He was labeled with "severe depression due to hardening of the arteries", drugged up to the eyeballs, and died a ragged lonely man when I was seven.

For Marilyn, it's been a struggle most all of her life.  She held a job until 1968 or so, but that was only due to the kindness and generosity of her employer who treated her like family, put up with much mishegoss, and then, finally, couldn't any longer.

She was never homeless.  A rent controlled apartment was very helpful in that regard.  Although during a psychotic break, when she went missing for a week, she was found, finally, living in the bathroom at Penn Station with her life's savings in cash incredibly still stuffed into the pockets of her overcoat.  The radio that had been implanted in her head had told her to leave home, go there.

The fact that she has made it to this ripe old age is somewhat of a miracle.  A miracle combined with the fact that when she is being less crazy (she is never, truly sane, just more and less crazy) her core personality can actually shine through.  And Marilyn, the less crazy person?  Is all kinds of smart and funny, charming and wonderful, irresistible and charismatic.  Also, in her younger days?  Quite beautiful.

That's Marilyn on the left, with my Mother, Aunt Eva, Grandmother, Father, Uncle Walter.

So when she is being her somewhat saner self, Marilyn gets people to care about her, to help her, to take care of her... until she cracks wide open again and acerbically and emphatically pushes everyone away.  Paranoia manifested big and bold is no fun at all for anyone, deeply destructive of the self and shredding of all relationships; corrosive acid sprayed in all directions.

Which is why I haven't seen her in a dozen or so years.  My helping hand has been bitten too many times, I stopped stretching it out.  Same with my mother (although she has seen her more recently).  She would visit Marilyn, whether in her apartment (while she still had an apartment), or in the hospital (during one of her many psychiatric hospitalizations) bearing gifts aplenty.  A few visits would go well, and then the tide would turn, there would be accusations and bitter words, because nothing was ever enough for Marilyn, whatever you generously gave, you were accused of withholding all the rest.

There would be attacks, usually verbal, occasionally physical, and my mother would storm off, muttering "The hell with her!" under her breath, tears streaming down her eyes; wounded by and hurting for her beautiful baby sister who had come to this, become this wretched miserable creature.  And then some time would pass, sometimes months, sometimes years.  And it would start up again.

But age is not kind to the mentally ill, and in the past dozen or so years there have been very few periods of lucidity, and our last encounter ended quite horribly.  There was violence, we withdrew.  And Marilyn finally lost her apartment, entered into a series of nursing homes, and we lost track of her for a while.

But she is still family, so when my Uncle Walter, her big brother, called me Sunday night to tell me Marilyn was in the hospital and not doing well, and could I please tell my mother (his big sister) about this, and could we go see her and meet with her doctors?  Of course I said yes.

Coincidentally, I had been thinking about Marilyn a lot lately.  Jacob's new school is in her old neighborhood.  On the days when I pick him up, we sit and eat our snack in the square where she hung out, was a regular; one of those people settled in all comfortable on their own personal benches, one of those "crazies" that you avoid because their laugh is a little too close to a cackle, and maybe they don't smell so nice.  I've been thinking I should try to find her again, wondering if she were still alive, thinking my mom would be wanting to see her sister about now.  And then, Sunday, the call.

So today, after going to my mother's apartment and yet again "fixing" her "broken" TV ("Mom, you changed the input again -- just don't touch THAT button, OK?") bringing my mother to the audiologist to pick up her hearing aid (yay!) and having them program it ("Why is everything so loud now?") we headed over to the hospital to visit Marilyn.

I was acutely queasy as we walked down the long, long corridor to her room at the end of the ward, my dread growing with each slow step forward.  I knew she would be in terrible shape, aged well beyond her years by the hard life she had led.

I'd learned she had been hospitalized for a week, transferred from her current nursing home to the ICU with a raging, life threatening UTI gone septic.  Infection vanquished, she had remained nearly catatonic, refusing to speak, refusing to eat.  Feeding tubes had been put in and were quickly pulled out, rejected.  She wanted to be left alone.  She wanted to die.

We tiptoed into the room, she was indeed looking ragged.  My mother started to pass the first bed, head toward the next when I stopped her, recognizing a familiar shape of nose.  Asleep when we arrived, I touched her arm to awaken her.  She stared, startled, but recognized us.  Behind her large eyes, now sunken, the piercing intelligence that has always been there peered out, missing nothing.  "Is it cold out?" she asked, noticing our down coats piled on the chair.  Her voice was a horse whisper, speech slurred by a complete lack of teeth.

We told her we had lost her, but that now found we were here to stay in her life.  We took turns holding her hand, stroking her arm.  I showed her pictures of my boys.  My mother shared with her the death of my father, her brother-in-law. 

She was clearly glad to see us.  But when lunch came she still refused to eat, set in her determination to be done with it all.  Or maybe the senior dementia has overtaken her everyday crazy and she has forgotten how to eat.  Or maybe she thought they were trying to poison her.  In any event, the outcome will be the same, soon.

It was, by necessity, a short visit (I had to return home to retrieve a child) but we reassured her we would be back within a few days.  Her eyes followed us out of the room.  Her doctor arrived just as we were leaving, hurried words exchanged, my promise to return the next day extracted.

Sometime soon I will tell more tales of my Aunt Marilyn, of the years of my childhood when she was a regular part of my life, when the "crazy" referenced more of the zany and wacky, the youthful and fun aspects of her personality, and less of the truly meshuggina. 

Marilyn, my Dad, my Grandma, cousins Annette & Jessie (with cello) & Me

Believe it or not, in our family "Crazy Aunt Marilyn" is a term of affection, of acceptance.  It's just who she is.  And we have always loved her, even in absence, even though when around she often drove us... crazy.

Tomorrow I will meet with her "team" at the hospital and we will decide how to move her into palliative, hospice care; how to prepare for her ending.  Tomorrow we will plan for the final days of a life that unraveled a long time ago, a life that has been hanging in lonely, stringy tatters for oh, so long.

Tomorrow I will again hold the hand of my childlike, wizened Aunt, as she turns her piercing gaze upon me.  Tomorrow I will look back through the tunnel of time to see before me the beautiful girl with the big dark eyes who wanted to be a dancer, my mother's baby sister, my "Crazy Aunt", Marilyn.
 
Update: My Aunt actually rallied, did not die, began to accept some nutrients, she will still eat no solid food, but will drink juice and milkshakes.  She has since moved back to a nursing home, although she cycles in and out of the hospital every few weeks with some minor crisis. My mother and I visit her regularly, and although she never speaks more than a few words to us, is still deep in her dementia, she knows we are there and it means so much to her.