Call in the Calvary

One year ago, on a sunny but cold morning not unlike this one today, I received a call from my father's hospice care nurse, Ed.

It was time.

Dad had taken in very little to eat or drink for days. He was emaciated. He was dehydrated.

It was time for my father to make the final move of the bitter endgame that had been going on so long it was hard to recognize he was finally there.  Until he so clearly was.

His pain could no longer be well managed by his in-home hospice care team.

He was suffering.

He had wanted to die at home, but had become so un-moored in time and space, he no longer know he was home when he was there.

The comfort of easement from pain trumped the comfort of his own unrecognized bed.

And so we made plans to bring him to Calvary Hospital.  A lovely, caring hospice center in a godforsaken corner of the Bronx.  They specialized in cancer patients, but were known to take the frail elderly, dying of other causes, too, if asked properly.  And Ed, of course, had connections.

When I got the call, Ed didn't know if a bed would be available right away, but as I rushed through my morning routine to hurry to my father's side, I got a second call from Ed: yes, there's a bed, and yes, they're coming for my Dad today.

I was told it would take a few hours for the transfer ambulance to arrive, but they pulled up to the door of my parent's senior residence precisely as I was approaching the building.  We rode the elevator up together, they: on the job, jovial; me: grim, ground flat, pasting a thin smile on my face to greet my mother without sending her into tears.

It was decided that my mother and their lovely, loyal aide, Mina would ride to Calvary with my father, while I would stay behind and make phone calls, arrangements; meet them about an hour later.

They hurried out, and soon I was busy on the phone canceling his in-home aides, alerting my siblings, arranging pick-ups and drop offs and all sorts of childcare for my kids for what I knew was going to be a very long day.

Also, my least favorite call, alerting the funeral home that it was likely to be sooner rather than later, checking in to see that things were still as I had left them in December, when I had first contacted them, when we had been told to prepare for his immediate departure.

Mina called to let me know they had arrived, that all was OK.

I completed my tasks, sat for a few moments, shell-shocked, in the suddenly too quiet and still apartment.  A cranky meow reminded me of my last obligation here: leave food out and a light on for Willie.  He wove himself about my ankles as I poured him fresh water, told him his “Daddy” was gone.

I hailed a cab on the street. Actually I hailed three or four before I found one who hadn't begged off, whose eyes didn't go wide with terror when I explained we were traveling to the Bronx and I had no idea exactly where we were going, knowledge of only a street address and a general neighborhood name to steer us.

We drove through grim, gray, blighted streets; past sagging houses whose children tumbled out to play on concrete playgrounds washed in visible car exhaust.  I had thought I was too numb to feel any sadder, but that did it.

I arrived, found Dad's room with Mom sitting by his side holding his hand.

He was grimacing, agitated, seemed to be in pain. We notified the nursing staff and mere moments later a morphine shot mercifully appeared. His face softend, his body relaxed once again into sleep.

I looked around the small, spare, clean room, noticed a shopping bag on the window sill, clearly come from home. "What's that?" I asked my mother, hoping it might be items she had packed to keep herself comfortable and occupied while waiting with my father.

Her unexpected answer: "Oh, that's some clothing I brought along for your Dad.  He'll need something to come home in." I must have looked perplexed because she added "Remember? He was only wearing underwear when they brought him in here."

Mina comes up beside me, whispers that she had tried to dissuade Mom from bringing this bag, but Mom had insisted.

I sigh.  I take my mother's hand, stroke it.  Look down.  Look up.  Bite my lip.

As gently as I can, I remind her: "Mom. He's not coming home from here."

"He's not?" she asks, her voice quavering; confusion, doubt, veiling her eyes.

I understand. The many other times my father has gone into the hospital, gotten fixed up, he has always come home.

"It's not that kind of hospital" I try to explain. "This is a hospice. Here they will make his final days as easy and pain free as possible."

"Really?" My mother asks, all teary. "This is the end?" her voice crackling, sadness swamping her anew.

This is the tragedy of my mother's terrible memory.  While it has provided her the welcome relief from having to live day-to-day as we do, with the knowledge of Dad's immanent demise hanging over her head, it makes it constantly heart wrenching for us, who must over and over and over again inform her, as if for the first time, that his life is soon drawing to a close.

On the other hand, it does occasionally provide some comic relief.  When my sister Lois called to discuss her travel plans for Friday, she asked to speak to Mom, too.  I didn't listen in on their conversation, let my mind wander.

Afterward, Mom asked me: "Where are we? What is this place called? Lois asked and I couldn't remember... I told her it had something to do with horses."

It took me a moment to figure out the exact disconnect, and then I laughed.  "No mom, you're thinking of the cavalry.  This place is called Calvary."  She laughed. 

I didn't add that it is named for Jesus's suffering, the location of his crucifixion.  Better for her think of rescue by a charge of horses, instead. 

In a bit, Mina brought my mother to the cafeteria to get something to eat, to give her a break, and I was alone with my father for a little while.

I watched him sleep.  He woke for a moment, I stroked his gaunt cheek.  He fell back asleep.

And then?

God help me, I pulled out my phone and I took some photos of him, there.

I knew they would be sad, awful, ghastly; not how he would want to be remembered.

But I also knew they were an important document, a testament to his great strength of will that I should not forget.

I knew that exactly how he looked at the end would fade, and that somehow I needed it to not disappear completely; that I would need to remember, and that my father the photographer, the documentation, would understand this impulse, and approve.

So I took a few quick photos, the last of my father.  At the very bitter end of his very long sweet life.

For those who do not want to see the ending?  For those of you want to remember him as the proud, strong, handsome man he was until nearly the end?  Look immediately below, then do not scroll down further.

Here is a lovely photo of my Dad, taken on my Mother's birthday in September, 2009, on one of his last good days:

Dad, September 2, 2009

And now, if you are willing to bear witness to my father's gruesome ending, keep scrolling down to find this: a set of photos taken in my father's hospice room, three days before he died.

They are not lovely.
 
He is emaciated.

There are scabbed bruises on his forehead and nose from the last time he had tried to get out of bed at home, tried to stand, long after it was possible.  He had banged his head on the protective bed-rail.  Hard. 

He barely looks alive.

But still I need to share this.

I need to show you, who wish to look, the father I last saw, held, kissed goodbye, one more last time, this one year ago.

These photos were taken on my phone, the only camera I had handy.

They are blurry and of odd color, the blue light from the window, the yellowed incandescence of his room lamp blending in the middle over his face, adding a further edge of the surreal.

But no, this was all too real:

Dad, March 10, 2010

It was hard to leave him, late that night, but I had to go home, rest, gather strength for the coming day.

My mother stayed. She was by his side, as ever.

I came back the next day.

And then, the day after that?

He was gone.


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Sad Anniversaries

I am feeling down today.  Blue.  Under-slept and over-tired.  Getting absolutely nothing done.  Reading, eating cookies.  Not answering the phone, just not feeling social enough.

And that shower I was going to take this morning?  Not yet, my friends (be very glad computers aren't equipped with smell-o-vision).

And it wasn't even classic peri-menopausal insomnia keeping me up last night; I just didn't let myself go to bed.  Because, don't you know, if you don't go to sleep, then tomorrow never comes.  Convenient little trick, isn't it?

What?  That doesn't work?  Yeah, I kind of figured that out myself.

I was wondering why I was such a hot mess right now, and then realized, of course, it's an anniversary. And not a happy one.

On this day, December 7th, last year, Dad went into the hospital for back to back check-ups with his cardiac and vascular doctors.  I had cleared the whole morning.  I didn't get home until nearly midnight.

When the vascular doctor could find absolutely no blood flow to his left leg, and his cardiologist looked at his echo-cardiogram, it was clearly all going south.  Fast.

There was an operation. There were events and procedures.

When they sent him home a few days later, it was to die.

We were told to expect him to last a few days, a few weeks at the absolute outside.

It was not an easy or happy holiday season last year and all the festiveness circling round me this year is leaving me likewise cold.

In some ways it’s even harder.

Last year there was my father's constant needs to be met, his acute care to engage in; my brother and sister charging in to spend final, precious time with Dad; my devastated mother to comfort; a swirl of practical activity as we prepared for his last few final days.

And then?  He lived three more months. The whole winter.

My father spent last winter, the whole fucking winter, dying. Very slowly.  (Sometimes being strong can work against you.)

And now, to me, winter = death. And I don't want to have anything to do with it.  I want to stay inside and hide.

But I have children.  They need to come and go, and can’t do it alone.

This cold blustery weather brings me back to all those freezing late night trips across town to buy the adult diapers that my mother informs me they are out of at 11 pm.

Those 2 a.m. trips to pick him up off the floor when he had fallen, getting out of bed and walking to the kitchen, which his doctors had assured us was an utter impossibility for one so frail and infirm.

They had no idea what a stubborn, willful man my father was.  If he wanted to go to the kitchen, he was walking into the kitchen, damn it, dying body or no.

And then he was no longer capable of even that.  And then there needed to be round the clock care.

And then, finally, for his final three days, he was in the caring shelter of a hospice in the nether regions of the Bronx.  I hated the long ride out there on traffic choked streets through those blasted, blighted neighborhoods more than anything in my life to that point.

In the gray March chill of a clinging winter that would not loose hold, I said farewell to my father.  To the ragged, skin-stretched skeleton that was what was left of him.

I am not looking forward to these next three months, re-living those days.  I wish for an end to this awful year of bereft firsts.

I am wishing I could just fly south, like birds and butterflies. Flee; fly free of winter; skip out on all this.

But I have children, here.  A husband.  An elderly, sad, increasingly lost mother.

And these ties that bind also offer what solace there is. They are my warmth, my light; my summer-in-winter.

And if I hold them a little too tightly tonight, with my eyes shining a little too brightly, I hope they will understand.

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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. 

Raging against the dying

Ed, the wonderful VNS Hospice nurse didn’t want to tell me, but on Tuesday when he’d visited my father he thought he wouldn’t last the night.  Dad had been slipping for the past 2 weeks and was looking very ragged: sleeping all the time, no appetite, being confused and foggy when we did wake him up, his life lacking all coherence, now confined to a room.

Actually a few square feet of a room: his side of the bed, and the view out the window - a cityscape, vaguely west, their breathtakingly sweeping Hudson river panorama having been given up, along with their nominal independence when my folks left their west side apartment last May for the comforts of assisted living.

So imagine Ed’s surprise when he came on Friday to find Dad sitting up, slurping his soup with gusto and loudly longing for a beer to accompany it.  “He’s a lot stronger today” he told me with amazement in his voice.  Much experienced in the ways of the dying, he’s mostly seen people trundle off in one direction only.

That’s when he confessed that when he’d told me on Tuesday “He’s not doing so well.” He’d meant REALLY not doing so well. But, as I’ve said before, Dad is most decidedly not going gentle into that good night; he is going kicking and screaming and crying and dragging both feet, even if he ends up a few toes shy of ten by the end. He is, indeed, burning and raving at close of day.

He is being kept alive not by machines or miracles of medicine or any other state-of-the-art artificial means.  He is being kept alive by his own hugely strong ego, his spirit, his body’s memory of life and liveliness.  He is weak as a kitten: this formerly 6 foot, now 5 foot 10 frame gaunt and skeletal, his hands appearing like huge knobby mitts stuck onto stick arms: my Dad the snowman. 

I had once again taken the boys to see to see Dad “one last time”, because I knew my Mother was missing them and needed to see her grandchildren, the future.  Knowing the end is near, she will barely leave my father’s side, although all she does is cry and cry and she truly needs all the distraction we can muster for her.

So even though I had said we were done with all that, last Saturday found the three of us trekking across town.  We walk in the door, Ethan peeks into the bedroom where Dad has taken up final residence, and, never one to mince words, announces: “Grandpa looks dead”, refusing to go into the room.

Jacob on the other hand, autistic obliviousness on his side, bounds into the bedroom, and after a cheery “Hi, Grandpa!” proceeds to take over grandpa’s dry erase white board to draw happy smiling green suns.  We had been using that board to communicate with my deaf father, back when he could still decode written words.

For the past 2 weeks, however, he has squinted, looked at the writing like its hieroglyphics and waggled the back of his hand at it in the universal gesture of “take that away, it’s not for me”, so we have given up on communication beyond smiles, hugs, and gentle strokes.

Jacob then settles into bed next to my father, not noticing that his grandpa has no idea who he is, and pats him on the back saying “close your eyes Grandpa, go to sleep Grandpa” and “feel better, Grandpa.”

I’m not sure what’s making me cry more, Ethan’s blunt truth, Jacob’s sweet, cheerful care or my own deep, deep sadness that my father often does not recognize me, is losing his connection to us who are still his earthly tether.

And then on Thursday, when he’s “up” again an old friend, Gloria, comes to visit.  I had sent out an “If you want to see him to say good-bye, come SOON” e-mail to their few remaining friends, and Gloria had answered the call. 

Dad just lit up when she came into the room, clearly recognizing her, and so delighted she’d come.  He was able to stay awake long enough for them to spend time together, and she also had a long wonderfully distracting visit with my Mom.

Gloria had been Dad’s agent when he was an advertising photographer, and also his girlfriend for a while, before my Mom.  After she left, Mom suggested: “This has cheered him up so much, maybe we should find all of Jim’s old lovers and get them to come visit.” 

Once again, in spite it all, Mom’s sense of humor is still intact.  When that goes I’ll start to really worry about her. 

And because I’ve quoted it here, and it’s wonderful and relevant for me right now, here’s that Dylan Thomas poem, written in 1940 as his father was going blind:


Do Not Go Gentle Into That Good Night

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieve it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.