I’d Do Anything If Only

Atina!  Stop shredding your bed!  Atina!  You can’t have chocolate!  You’re a dog!  Chocolate is NOT good for doggies!  Atina!  Get that goddam wet ball out of my face!  Atina!  SHUT THE FUCK UP!!!

Sigh.

Last night was a total wreck.  For some reason Atina spent her night growling, woofing, and outright barking, at something that I could not see. 

We are in a well-lit campground, so if there was, like, a bear strolling around, or a bull moose, or a hedgehog, I’m certain I would see it. 

Maybe it was some perv hiding behind a tree, whacking off.  All night.  Sheesh.

On this premise, I chalked Half #1 of the night up to Virtuous Vigilance on the part of the Pup.  But when Night Half #2 rolled wearily around, I got cranky.  I shushed.  I gave orders.  I YELLED.  I cursed. 

As grey dawn faded into a grey rainy morning, I felt worse and worse.  If there’s one thing that kicks me right out of orbit, mentally and physically, it’s sleep deprivation.

And of course my baby still needed her walkies, and breakfast, and more walkies, and playtime…And I needed large quantities of thick coffee, and something to force into my queasy stomach so I could take my pills, and I needed to use the bathroom, and brush my teeth, and put on clothes…And Atina, none the worse for her own sleepless night (who knows, maybe 🐶 s only take 😸 naps anyway…), was red hot and rarin’ to go, while I was dragging serious ass.

I got to feeling cross and cheated and just plain ill-tempered, and then I thought about something that happened, and my mind changed.

Here is what happened.

1989. I was pulling a two-week stint in the Pediatric Intensive Care Unit–the PICU. 

My residency program was working us like slaves because we were down four warm bodies.  One, my sweet ward partner, died in a car crash.  One got meningitis from a kid she was treating.  One got hepatitis from her dear boyfriend when he got back from India.  And one was on a sort of permanent leave, because he had miscalculated a chemotherapy dose and the child died.

So the house staff were stretched much thinner than usual.  Instead of every third or fourth night call, we were on every-other or every-every night.

In the PICU we usually did every-other-night, actually 24 hours on, 24 off.  But since we were so badly strapped for staff, the PICU director came up with a brilliant plan:  he would live in the PICU for two weeks, and I would live in the PICU for the next two weeks, and then we’d switch off again for another month.  That way we’d both get to see our families, for the two weeks we’d be off.  And of course if things were slow, our families could come and visit us in the call room, which was an 8 x10 ft luxurious affair made of beige-painted cinderblock, with a tiny bedside table to hold up the phone, and a worn metal chair.  

When you switched off the overhead fluorescent lights, you were instantly plunged into darkness.  Fortunately, every doctor carries a penlight, so at least you could find the bed, if you ever got a chance to actually lie down.

Hypervigilance is a common symptom of PTSD.  Therefore, since half of my consciousness was always scanning the PICU for problems, I never really got to sleep. 

One night when we had a truly puzzling and terribly critical case on the unit, I lay staring into the velvety black of the call room.  Everything had been taken care of, rounds, orders, and the nurses were wonderful and right on top of things; so there was no reason not to catch a few winks.

But I was in the grip of free-floating anxiety, so I felt my way along the wall until I found the light switch, and lacing up my Rockports, I sidled out into the unit.

We’d received a case that day that came in via the ER.  It was a little three year old boy, who presented with a high fever and blueberry muffin looking rash.  I mean really, he looked like a blueberry muffin.  But unlike muffins, which are good, he was not good.  He was in very bad shape.  Septic shock of some kind.  Our usual tests could not detect the pathogen, or anything that could have caused his condition.  This was 1989, remember.  We’ve learned a lot since then.

We ran through every possible infectious disease that we knew about, and every form of toxic ingestion or exposure, and every possible cause of bleeding and organ failure, but nothing came out positive.

So we did the only thing we could do: we put the little guy on life support, gave him fluids and antibiotics and steroids, and prayed that with supportive care, his body would come through whatever it was, and heal itself.

This was not to be.

Even with maximal supportive care, his body deteriorated.  He had been unconscious when he came in, and never opened his eyes or gave any indication of awareness.  His kidneys stopped working, and fluid was backing up into his organs and tissues.  We tried our hardest to keep up with that too, but soon it was clear that this little boy was not going to make it.

I can’t remember who we were waiting for.  His mother had died, I remember that.  It was just his father alone who took care of him.  We must have been waiting for someone else…to be there…when we took him off the vent.

As I turned the corner from my call room to the unit, I saw the boy’s father sitting on a hard chair, his knees up against the bed, stroking his little boy’s swollen hand and weeping, his shoulders heaving.

I laid my hand gently on his shoulder and said nothing, waiting.

“Yesterday,” the father sobbed, “He was running around making so much noise, I told him to shut up…Oh, if he would only make that much noise again!”

Yom Kippur

As the sun sets today, Jewish people all over the world will don their robes of pure white.  Even now they make their way to the Mikveh, the solemn bath of Living Waters that purify body and soul, in preparation for the Day of Awe, where we stand fasting before the King of Heaven and Earth to confess our sins and beg for forgiveness.  On this day our sins are forgiven, we are released from all vows, the slate is wiped clean for another year.

We wear white, because we are buried in white robes.  In fact, the men wear a kittle, a lightweight embroidered garment, in which they are married, and in which they will be buried.

We fast, and we wear white, because on this day we are like the Angels, who neither eat nor drink.  We wear our burial garments because on this day we are judged, as we will be on our deathbeds.

We fast for 26 hours, both from food and from water.  It’s a hard fast, especially in the Land of Israel where the air is hot and dry.  To add to this hardship, we stand for much of the day-long service.  Some people take on a personal service to stand during the entire service.

It is a day of examining the heart, a day of much weeping, a day of release from the burden of sin.

This Yom Kippur marks the first anniversary of Dad’s departure from this world.  His death.

I don’t know where Dad went when he died.  He didn’t know where he was going.  All he knew was that he was on his way out, and he was terrified.

He was sure he was going to be punished.  For what, he didn’t say.  He couldn’t say.  All he could do was shudder.  He was that terrified.

I have some ideas.

I know that he felt overwhelming guilt for things he had done in the war.  World War II.  He was sure he would have to pay for those things, one way or another, and the not-knowing gave rise to all kinds of imaginings.  He was a man who lived by imagination, by visions, by images, in the shadow-world.  It was the magic of his art, and the plague that visited his dreams.

I knew he would choose this day.  It was the deepest, darkest, most awe filled day.

Why not?  Dad never brooked folly.  If he was to die, it would be on the heaviest day of our year.

As evening approached, he gripped my hand for hours.  My hand screamed with arthritic pain, mine and his.

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Darkness fell.  His lips were dry and cracked.  I took some of the Hospice lemon flavored gel out of the cooler and brought the spoon to his lips.

He clamped his mouth shut, with the slightest shake of his head, “no.”

“Your food is spiritual now,” I suggested, knowing that this, his last Yom Kippur, would be his first and last fast.

He nodded.  It was nearly the last movement of the symphony that was his life.

He slipped into a peaceful dream, and I lay down on the vacant bed in the room reserved for dying people.

I must have drifted off, for near midnight an agonized cry jerked me awake.  I rushed to his side.  His face was twisted, his body arched.  I wanted to throw myself upon him, but I knew there was no way to save him from his pain, so I sent him wordless messages…I’m here….I’m with you…I won’t leave you…

Then I knew.  One more thing….

“Dad, it’s Yom Kippur.  Your sins are white as snow.  You are forgiven.  You can go.”

His breathing changed from the near-death Cheyne-Stokes pattern: a period of no breathing followed by several deep breaths, to the imminent-death pattern of rapid air-hunger breathing.  I called the Hospice nurse.  She gave morphine.  I called my mother, and in my doctor calm voice asked her if she wanted to be there.  At first she said no, then thought better of it and said yes.

Soon after she arrived, Dad had grabbed my hand again and I stood there, watching him struggle with the Angel of Death.  At last he knit his brow, and with a determined effort, made the leap.

Oh, how many times have I seen that look, when steeling himself for some odious task!  Dispatching a dying animal, gripping his usual weapon, the shovel…

And now, gripping his own soul, as he let go and tumbled out of his body, into….what?

His grip on my hand disappeared.  I looked at his hand, so tight just a moment ago, now flaccid and white.  His fingers, now blue sausages.

“Lower the bed.  All the way to the floor.”  The Hospice nurse and my mother obeyed.  I got my Siddur, the Hebrew prayer book, while I cried out,

“Shemah, YIsrael, Adonai Eloheinu, Adonai Ehad…” 

Hear, O Israel, Adonai is Our God, Adonai is One….

Kaddish….

Yitgadal ve’yitkadash Sh’mei Rabbah…

May The Great Name be glorified and sanctified…

As the Deathbed Prayers stretched on, and my mother’s weeping grew louder, the Hospice nurse grew impatient and she called the mortician, who arrived with his impatient gurney.

“The mortician is waiting,” announced the nurse, just as I finished the Deathbed Prayers and was beginning to wash the body that used to belong to my dad.

I should have said FUCK OFF, this is my dad’s body, this is our religious tradition, this is Yom Kippur!

But I didn’t.

I watched them load him up, like a piece of meat.  They were casually chatting.  His dead face hung out; I pulled the sheet up to cover it.  My mother screamed.

His precious blue arm, the one that used to give me jovial hugs, had got caught between the gurney and the strap that held him on.  I pointed this out to the mortician and he fixed it, visibly irked.  My mother had declined a casket, since Dad was to be cremated.  Why waste money on a casket, only to burn it up?  No money in this deal for the mortician.

Now we have finished the twelve months of saying Kaddish, to help his soul make the journey into the Next World.  I am pretty sure I don’t believe in any Next World, but since I won’t know until I make that final leap, I leave the subject open.

Yitgadal ve’yitkadash Shmei Rabbah.

Amen.

Back From The Dead, For Now Anyway

Atina lay on her bed painfully struggling to breathe for hours that felt like years.  I wrote the previous post during one of those years, and I thank every one of you who have sent me such sweet heartfelt thoughts.

Later in the afternoon she dragged herself up–still couldn’t get her hind end to cooperate–and between the two of us, we dragged her into my bed, and snuggled together.  Every once in a while she’d stretch her long neck around so she could clean up my face, and finally when she got some energy worked up, she tried to hold me down to wash me, as if I were her own puppy sniffling and snotting in the bed.

A couple more hours and she wanted to go out and pee, so we went out.  A naughty squirrel decided to tease her by getting way out on a tiny branch, and fell THUMP into the road!  It made such a cannon shot hitting the ground, I thought it must surely have killed itself, but it jumped right up and scampered up the next tree over.

I think this must be how you check for life signs in a Malinois.

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“C’mon, Mom, just let me climb that tree, O.K.?  Just this once, huh?”

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A Malinois isn’t dead until you can heave a squirrel at her and she doesn’t move.

But now she’s all worn out from her squirrel hunt, back in bed exhausted. 

If she’s still alive in the morning (no, I’m not joking here), I’ve decided to go ahead with the surgery.  The biopsy will give us the information we need to first of all know for sure what the problem is, and whether treatment can give her more quality of life (to spend cuddling with me, catching frisbees, and chasing naughty squirrels).

There’s a fair chance she won’t survive the surgery.  But her rapid decline over the last few weeks tells me that her quality of life is getting worse.  I love to snuggle with her, but she should be running me into the ground throwing frisbee, not the other way around. 

Wish us luck.

So That I Not Forget

A dear friend of mine who holds down a spot for me in Jerusalem gave me this advice today: write down your memories of your last years, months, days and hours with your dad, because these memories fade quickly, and you don’t want to lose them.

I moved from Jerusalem to my parents’ property in 2011, in order to ride herd on the situation with my dad.  He had had several bad falls already by then, and flying back and forth from Israel every time he got a concussion was eating up my savings and causing me way too much stress.  So I packed up and moved here.

Dad was still pretty lucid then, but showing signs of dementia, and his physical body was falling apart piece by piece because of the same degenerative joint disease and degenerative disc disease that he passed on to me (thanks, Dad).  It was getting so that he couldn’t do much for himself anymore, between the cognitive decline and the physical disability.

We have always had what I can only call a platonic love relationship; certainly a father-and-daughter love relationship, but something more–a collegiality, a mutual admiration, and a non-sexual transcendent enduring love free of any vestige of pettiness or jealousy.

In the years since I have been here, our relationship was forged even stronger thanks to my mother’s need to have time on her own, a healthy thing that provided my dad and I with ten or so uninterrupted hours every week to review the events of our lives and our life together, to share our meaningful and downright fun times, and our regrets at not having spent more time together.

We also had the blessed chance to talk about how we felt about each other, the feelings and the hurts and the wishes.

As he moved toward his death, we moved deeper into the dark side of his relationship with my mother, who has always had a short temper, no patience, and no particular respect for much of anything.  He had always kept her under control by means of fear–whenever she (or, rarely, I) got out of control he would seem to triple in size, and bear-like, roar his displeasure.  My mother was terrified of these “Hulk” episodes, and the fear of provoking one kept her screaming fits in check, most of the time.

But as he became incapable of terrorizing her, she pulled out all the stops and reveled in her newfound power over him.  I won’t go into detail, since this is an essay about him and not her, but I mention it only to say that he often poured out his anger and feelings of helplessness during our ten hours a week.

During his various stints in the nursing home in his last months, I sat with him many hours a day.  Often, we just held hands, since his brain was further damaged by head injuries sustained in various falls.  And until he lost the faculty of speech, in the last weeks, we processed things that we cherished, things we wished we had done while we had the chance, and things we had done or experienced that we wished hadn’t happened.

We held hands and kissed our dry pecks said “I love you” a million times.  I am so glad we did that.  It’s bitter-sweet now, and perhaps will always be, but at least I have the comfort of knowing that we did not hold back out of artificial formality.

Two nights before he died I was restless, could not sleep until four in the morning, when I fell into a dark slumber from which I awoke with a feeling of urgency.  I dressed quickly and drove to the nursing home.  He was lying in the “quiet room” where they put people who are about to die.

The previous day, he hadn’t known me.  Even though I knew this would likely happen at some point, it hit me like a cannon ball in the gut.  I lost it.  Hot tears choked me, I fell off my feet into a wardrobe which came close to falling on me, and I didn’t care.  I slid to the floor sobbing.  My mother wanted me to get control of myself.  I ignored her.  After some time I sobbed myself out, and asked her to go get me a latte, which gave me some time to just look at my father, who was now asleep, and remind myself that it wouldn’t be long.

It wasn’t.

The following evening I packed up my “24 hour kit” with my jammies, toothbrush, meds, and what-all, drove to the nursing home, and took over the other bed in his room.  He had his eyes open, and they seemed to be clear and not hazed over like they had been the last few days.

“Hi Dad,” I said tenuously.  I didn’t know what I would do if he didn’t recognize me this time.

“Hi Laur,” he said weakly.  I breathed out.

“I love you, Dad,” I wept.

“I love you, too, Laur.  I really, really, really love you.”  He had hold of both my hands, and I stood there, physically hurting from the odd position but with heart full of love.  I stood there till his hands relaxed and his eyelids drooped, exhausted.  I extricated my hands and, taking only minimal meds so that I could wake at any sound, lay down on the spare hospital bed to rest.

His breathing became more difficult, and he began to cough.  The coughing was followed by the gurgle of fluid.  I called the hospice nurse, and she ordered a cocktail of morphine, atropine (to dry up secretions), and Ativan.  This helped a lot.  It was ordered for every two hours as needed, and we needed it.

I must have fallen asleep, because at 4 am I was awakened by a high-pitched, primal, animal scream.  I rushed to his bed and found him unconscious, breathing deeply for four or five breaths, followed by 25 seconds of no breathing at all.  Cheyne-Stokes respiration: the breathing pattern that precedes death.  I called the hospice nurse again.

She arrived fifteen minutes later.  Yes, she said: death was imminent.  It could be minutes, hours, even days–but it would be here soon.  I cried, but she did not offer a hug.

Half an hour later, his breathing pattern changed to a regular rhythm, but very rapid.  The nurse took his pulse oximetry: 78.  Normal is in the high 90’s.  We knew it wouldn’t be long.  I called my mother, and she appeared in record time.  She must have flown over the mountain roads.

The moment before he left, his face contorted as if making a huge effort.  It seemed to me as if he had to consciously make that leap into the unknown.  And two shuddering breaths later, he breathed his last.

“His spirit is already gone,” mused my mother, doubtless trying to placate me–knowing how strongly I feel about keeping the Jewish burial practices, and not desecrating the body by burning it–“no more suffering, my love, no more suffering,” addressed to the lifeless shell on the nursing home bed.

Yes, he did suffer, mightily.  And as always, he was my teacher, my guru, in teaching me how to suffer.  He taught me how to live, how to suffer, how to die.

Tzeitcha be’shalom, Dad.  Have a safe journey.

Talking Shop

I don’t know whether you’ve noticed, but I’ve noticed, that I haven’t been posting.

Lord knows I’ve wanted to.

Blogging serves many purposes for me, as I’m sure it does for you: catharsis, self-expression, connection, community, dialogue, intellectual challenge, exercise and sharpening of one’s writers’ craft teeth, etc.

But: things around here have been less than peachy.

Dad had another stroke a week ago, was in a coma for a couple of days.  Then he began his struggle back into This World.  He’s not quite as “with it” as he was before–and he wasn’t too “with it” then either–but sometimes he knows where he is.  Thankfully he still knows who I am.

While we thought he was dying or about to die, there was a certain amount of drama (really?!) on the part of my mother, who actually hugged me and wept on my shoulder for an uncomfortable while.  I do feel sorry for her, but not that sorry.  But it’s not as if I would push my mother away while she’s having a dramatic sad moment, or a sadly dramatic moment, being about to lose her husband of sixty-six years.

Life is now a patchwork of caregivers and nurses coming in and out of the house.  That’s good, because I cannot help with physical needs other than the food-related ones.  I can prepare food, and help him eat it; and if he’s too “out of it” to get his food into his mouth, I can feed him.  Some days he’s able to feed himself, and some days he’s just too exhausted.  He’s hungry, but he just can’t manage the eating part.  I never realized how complex the act of eating is, until this experience of watching Dad’s stepwise loss of the mechanical ability to manipulate food, even with his hands, let alone utensils.

Once it’s in his mouth he can usually chew it up and swallow, but sometimes he needs his food “blenderized” and sometimes he just can’t eat at all.  I know that’s part of dying.  And sometimes he absolutely refuses to eat, and that’s part of dying too.

We try to keep him hydrated, at least.  He’s on a medicine that decreases the fluid in his blood, taking some stress off his heart, which does make him feel better but causes increased urination, so getting the fluids into him is important.  I know, it seems paradoxical: on one hand, taking the fluids out, on the other, shoving them in.

The other day we were sitting alone together, watching the afternoon coming in through the brilliant greens of the forest canopy, and he said:  “You and I need to go up into the woods and talk shop.”

I know what he meant.

We have always been best buddies, even when times weren’t so good, even though he served as my own private “Flying Monkey” who tried to explain away my mother’s evil ways.  I always came back, for my dad.  Here I am!

Just about every night, starting from…when?  Maybe after I got back off the road, when I was seventeen–every night when I was visiting and would be staying over, my dad and I would sit up late drinking whiskey and “talking shop.”  We would solve the world’s problems, solve problems for worlds that were entirely theoretical at the time but in fact exist now, and dig deep into authors, poetry, philosophical genres, the nature of human existence, art (of course), artists (same), relationships of all sorts….and now and then my mother would stick her head down the stairway to ask us to please “keep it down.”

I do salute her for allowing us those times together and not throwing a monkey-wrench into things, which she is quite capable of doing.  She knew that those late-night rap sessions were sacred.

The only time my dad and I ever got into a shouting match was oh, around 3 am when we were both three sheets to the wind, and somehow or other we fell into the topic: “Does God have a sense of humor?”

He staunchly and solidly maintained that God does NOT have a sense of humor.  The Holocaust.

I equally stubbornly held that God DOES have a sense of humor, because WE exist and that is the ridiculous proof!

Neither of us would budge, and having put a good dent in a fifth of Bourbon whiskey, the volume worked its way up until we were actually shouting at each other in earnest.  Luckily my mother yelled down the stairs for us to “knock it off down there.”  We sheepishly toasted “to Life” and stumbled off to our respective beds.  We never did resolve that point.

So, we need to go up into the woods and talk shop.  Some more.  Soon.

Which Disaster Will You Be Having Today, Ma’am?

It’s hard to know where to start.

When I last posted, I believe my dad was already in the nursing home, ostensibly for rehabilitation after a fall.  Medicare pays for 100 days of rehab, and then if long-term care is needed, one’s own funds have to be used until gone, and then Medicaid kicks in.  But then you are pretty broke, both the patient and the spouse, because the nursing home costs $6000 per month more or less, and that doesn’t include a lot of necessary things.  So for most normal people, it doesn’t take long to run through the savings/retirement account at that rate.

But it does include the basic care an invalided person needs, like feeding and diapering, showering, and a variety of entertainments for those who are able to take them in.

Well.  Dad’s 100 days were up, and Mom, who used to work at the very nursing home he was in, went to look at the room on the long-term care wing where he was to go.  I didn’t see the room, but apparently it was dark, tiny, and horrible, and Mom freaked out, and she was talking about it in front of Dad so HE freaked out even though he didn’t really understand what it was all about, and he started crying and in his broken language, begging to “go home to his house.”  So I freaked out too.

So Mom decided to bring him home, and I went along with that because Dad’s pleas were heartbreaking.

But.  I had tickets to Israel for the two weeks surrounding the festival of Purim, and Mom wanted to bring Dad home before I came back.  I didn’t like that idea, but when Mom gets a bee in her bonnet about something, it will happen regardless of any extenuating circumstances.

But.  I refused to cancel my trip on account of her poor judgement, so I put Noga in the boarding kennel and went off to Raleigh to spend a few days with my son before hopping a Delta flight (free with miles) to New York, and from there to Israel on Turkish Airways.

Time with my nearly-29-year-old baby boy was wonderful as always.  We never run out of things to talk about.

I arranged with my hotel to keep my car in their garage at $5 per day, cheaper even than the airport’s long-term-parking where you have to drag your luggage to a shuttle stop, then hope the shuttle appears before your flight leaves.  Then, when I returned, I would stay the night at the hotel and drive back to West Bumfuck (as my gay boyfriend in Jerusalem calls it).

My flight was at 7 am.  The night before, I called the front desk and asked them to arrange a cab for me at 5:30–the airport is a 20 minute drive, and since it was a domestic flight I only had to be there an hour before.

The desk person told me they don’t do that (calling cabs), but that there are tons of cabs hanging around at that hour because of all the guests leaving for flights.  But did I want a wake-up call?  I did.  At four am, please.  It takes me a long time to get ready in the morning.

Four am, both my phone alarm and the room telephone go off, and I levitate, thrashing for the light, the phone, whatever I could get my hands on first, sending everything on the bedside table flying: water bottle, glasses, asthma inhaler, cell phone, telephone, lamp.  Fuck.

I felt around and got hold of the lamp.  It still worked.  Then I collected the rest of my belongings, calmed down, and went for the shower.

I got down to the lobby with my bags at about twenty after five.  There was a cab waiting outside.  I rushed to the desk and asked them to reserve that one for me; but at that very moment a couple jumped in and off it went.  So I asked the clerk to please call another one, which she did.  I finished checking out and sat down to wait for the taxi.

An elderly yet fit couple came down, checked out, and sat down to wait for a cab.  Their flight was three-quarters of an hour after mine.

The cab showed up forty-five minutes late.  We all rushed out.  They had a lot of luggage; it took several tries to get it all arranged so that the back hatch would close.  By now it was well after six.  There was hardly any traffic; I entreated my driver to go faster, but he just bumped along.  It wasn’t his flight, after all.

In short, I arrived at the check-in exactly five minutes late.  Would they hold the flight?  No.

But I could go on the next flight, which got into JFK at 1:30 pm.  Great: that was exactly the time my Turkish Airways flight took off.  I called Turkish Airways.  It took a while to get someone who spoke English on the line.  Wouldn’t you think they would have English speaking customer service people in their New York office?

Anyway.

There is only one Turkish Airways flight to Istanbul (the only place T.A. flies from JFK) per day.  I could take the same flight out the following day: for an additional $444.

I considered it briefly.

Then it became clear that this pattern of obstacles was trying to tell me something.  But which thing was it?  Was it a test, to see how many obstacles I could overcome in order to merit to be in the Holy Land for Purim?  Or was it a sign that I’d better turn back, let go, let all my plans (and considerable money) slide?

I chose the latter.

So I took another cab back to my hotel (another $45 fare!), collected my car, drove the five hours back to get Miss Noga, who was of course thrilled to see me (and I her), and drove back up the mountain to beautiful West Bumfuck.  I fell into bed at 7 pm and slept until 10 the next morning.

I figured I’d better go up to the house (remember, I live in an outbuilding on the property) and see what was going on.

Mom was sitting at the table having her breakfast.  Dad was sitting at the table in his wheelchair, staring at the slices of cheese on toast, pawing at them with his nearly useless hands while Mom ate her food and mildly scolded him for playing with his food.

She had only just brought him home, it turned out.  She brought him home in her car, having forgotten that there is a county van service that would transport him safely in his wheelchair, for free.  The very same one we used last week to take him to the dentist.

I fed him his cheese, but the toast was too much for him: it stuck in his throat.  He can’t eat solid foods anymore.  It has to be mashed up or put through the blender.  And his hands have forgotten how to get his fork/spoon/hands to his mouth.  If no one feeds him, he doesn’t eat.

Then the home hospice nurse came and did an intake.  They have someone coming to the house a few times a week, and they provide a wide range of services that I am grateful for.

Mom has arranged for three hours a day of private nursing assistance.  The guy came today and got Dad out of bed, which was a good thing because Mom was unable to get him out of bed by herself.  TYS, TYS, not funny.

The bed of course was soaked in urine, since my dad is incontinent.  So he wanted to get up, naturally, but couldn’t because he is mostly immobile, and Mom is 87 although she has not so far awakened to that fact.  So they had to wait for the nursing assistant to arrive, to get Dad out of bed and showered and dressed.

I showed up there at noon, having slept till 11 am (am I stressed or something?!).  Mom had made Dad a sardine sandwich–his favorite!–that he had not had in 103 days, the time he was in the hospital and nursing home.  So Mom was very excited about the sardine sandwich.  Dad was asleep in his wheelchair, drooling on his front.

She sets this delicious sandwich down in front of him, with all sorts of expressions of anticipated delight.  He stares at it blankly.  I ask him if he wants a bite.  He nods, so I pick up the sandwich and bring it to his mouth, which remains closed.

“Do you want a bite of sardine sandwich, Dad?”

Nods.

“Then you have to open your mouth.”

He does, I slip the sandwich in, and he takes a bite.  I watch out for my fingers.  He is known to have a ferocious bite.

We manage another bite, and then his throat rebels.  I wait anxiously for him to get it swallowed.  I guess that’s the end of the sardine sandwich experiment.

But Dad reaches over, in a rare moment of coordination, and takes the top piece of bread off the sandwich: he uses his spoon to carefully butter the bread with apple sauce, then drops it on the plate.

Mom mashes up the remaining sardines and takes the bread away.  I feed Dad the sardines.  When they’re gone, he spies a bit of onion on the plate and points to it.  I feed it to him.  There are little specks of sardine here and there on his plate; he points to them, and I gather them up on the tip of the fork and put them into his mouth.

Then he has an attack of acute chest pain.  This has been happening more and more often.  In my opinion he’s having cardiac angina–when the heart muscle doesn’t get enough oxygen, it complains loudly with pain.  My mother has convinced herself it’s indigestion.  Well, whatever.  I try to convince her to give him a nitroglycerine tablet when he complains of chest pain, but she looks off into the distance, which I know means “I won’t.”  She says she will give him an antacid.

And now she’s decided that he doesn’t need his pain medication for his destroyed spine and shoulder, because “he just sleeps all day.”  I remind her that maybe sleeping all day might be better than being in agony all day.  Quality of life and all that.  Besides, he sleeps all days anyway.

She briefly brightens up at “quality of life,” being a social worker and all, but then starts complaining again that the medicine “dopes him up.”  So I don’t doubt she will withhold his pain meds.  If she does, I will speak with the hospice nurse and see what good it’ll do.

So here I am, back in my own little hornet’s nest in West Bumfuck, waiting to see what will be.  I know what will be; it’s a matter of when.

 

Sundowning and Other Strange Brain Behaviors

Last night as I sat by Dad’s bedside, feeding him chocolate ice cream (his favorite), which mostly ended up in droplets on his hospital gown, he asked me: “Do you hear that?”

“Well, there are a lot of things to hear.  There are people talking in the hall outside your room.  Is that what you mean?”

“No, I mean there’s a saw running.  Are we in the basement of the shop?  Did I, or we, leave a saw running?”

“I don’t think so.  We’re not in the basement of the shop.  We’re in the hospital.”

“No we’re not, we’re in the shop.  In the basement.  Please go turn off that saw.”

I listened for a bit to see what he could be interpreting as a saw, because he was getting a bit agitated.  In fact, he started trying to get out of bed.

There was in fact a sound that could be saw-like, if you didn’t know and your brain was addled.  It was an air compressor that feeds air into the high-tech leg-massaging pneumatic stockings he’s got on.  So I pointed that out, that there was a compressor running and that’s what was making the saw-sound.  He looked at me like I was trying to sell him a bill of goods.  But he calmed down about that, resigned, apparently, that no one was going to shut down the saw.

A bit later he heard a group of nurses chatting in the nurses’ station.

“I think they’re making a movie out there.  One of those spy movies, I think.”

“What, like James Bond?”  Sometimes it’s better just to go with the flow and not try to “reason” with a delirious person.  Arguing with them about their relative view of reality can agitate them.

“Yeah, sort of…(unintelligible speech sounds).  “Are you part of that movie?”

“No, I’m not in the movie.”

He nods his head and closes his eyes.

He’s sundowning.  It’s very common in dementia.  Somehow, when night comes on, even if the room is well lighted, they lose touch with reality.  Everything gets surreal and they can become frightened, and even try to run from unknown foes.  Many falls occur from this.  Unfortunately, in institutional environments it often leads to restraints: people being tied to their beds so they won’t climb out and fall.

It’s one of my greatest fears about my dad going to a nursing home, that they would put him in restraints when I wasn’t there.  I curse my mental illness for making it impossible for me to stay with him 24/7.  I can’t because I have to take this heavy cocktail of meds at night, and I wouldn’t be any good for helping him even if I was there.  Besides, if I don’t sleep I get very sick, and I can’t risk that.  I wouldn’t be any help if I had to be hospitalized myself, and I wouldn’t be able to spend quality time with him either.  So I am going to lobby for giving him a dose of Haldol at bedtime, to ward off the heeby-jeebies and let him sleep.

This afternoon I thought he was going to leave the planet.  He was Cheyne-Stokes breathing for a while.  Cheyne-Stokes is a pre-death breathing patten where the person takes 4-5 increasingly deep breaths followed by a period of no breathing for 10-15 seconds.  It’s the respiratory center in the brain shutting down.  I sat by his bed and cried my eyes out.  My mom, who had gone out to get us hot fudge sundaes, came in and saw me sitting there bawling.  At that moment Dad was breathing, so she said “What’s wrong?”

I said, “He’s Cheyne-Stokesing.”  She knows what that is, being a geriatric social worker, and having started up a hospice in this county.

“No he’s not,” she said.

“Watch,” I said, and he took four, five increasingly deep breaths and then stopped breathing for a good ten seconds.

She went over to him and shook him, and he opened his eyes and mumbled something unintelligible.

“He was just asleep.” she said.  We both know that people can go in and out of Cheyne-Stokes for days or weeks before they die, but it means the brain is getting ready.

I tried to get him to eat some ice cream, but he wouldn’t.  I have never seen him refuse ice cream before.  I asked him if he wanted water and he mouthed “yes,” so I got his pitcher and put the straw to his lips, but he couldn’t manage to open his mouth.  I told him to open his mouth but then he couldn’t close it.  So I took the straw and got some water in it and dribbled it into his mouth, and he swallowed it.

When my mom was out of the room, he opened his eyes and looked way up above his head.  His eyes widened, then he looked at the foot of his bed and mouthed, “Who are they?”  I know who he was seeing: the angels who surround a dying person.  I whispered the Sh’ma, the central Jewish prayer that is said twice a day and at the time of death, and I softly sang some other psalms.  He mouthed the Sh’ma with me, then calmed down and closed his eyes.

I was sure he was going to die today.  The nurses all got concerned too, and came in and checked his vital signs, but everything was ticking right along.

His doctor came in to see him later in the afternoon.  She said hello, and he perked up and smiled at her and returned her ‘hello.”

“How are you feeling?”

“Just fine, thank you.”

“Does anything hurt?”

“No, nothing hurts.  I feel fine.”

I was thrilled, and amazed, and felt like kind of a jerk for thinking he was moribund.  The doctor gave me a lecture on the phenomenon of Sundowning, even though it was bright and sunny at the moment.  I nodded my head.

Now I’m at home, having a break and writing this.  In a little while I’ll go back to the hospital and sit with Dad till ten or so, and try to keep his mind busy so he doesn’t try to climb out of bed to turn off the saw, or rip out his Foley catheter (which keeps his bladder empty), which he has been trying to do all day.  And I guess I’d better eat something.  All I’ve had today is a Cliff bar and a McDonald’s hot fudge sundae, not the best nutrition in the world.