And a Firewall Holds

American exceptionalism is an oxymoron these days. 

Because a moron is in the White House and 63 million people thought that was a good idea.

We are a drifting hulk and striving for steady leadership. Or even a little respite — comic relief — in our search for direction. (Thank you, Justin Trudeau, for your choice of socks on May 4th. May the Fourth always be with you.)

The abject corruption and self-dealing in this White House is so abhorrent and anathema to our 250-ish year-old experience (ok, the Teapot Dome scandal was amateur hour compared to this Administration), that we have no response. 

We keep thinking we are crazy because it can’t be happening, and surely the Congress and Department of Justice would investigate.  Oh, wait, this is the Congress that passed AHCA and a DOJ that imprisoned someone for laughing at Jeff Sessions.

First Brexit and then Agent Orange made the sane among us worry about the portents of a World War II redux.  One in which fascism/nazism would win precisely because 45 is enamored of strongmen and dictators.

If France “fell” to Le Pen and Merkel didn’t do well in local elections, then the conventional wisdom is that the world would devolve into conflict that would end the world.  Because now, as distinct from 1945, many groups have nuclear weaponry.

I believe that conventional wisdom.  And I am grateful for the election of Macron — which meant, for me, that people who love liberty, even for those they may personally despise, won the day — and the shoring up of support for Angela Merkel. 

But we must remain vigilant.

Because no one has to like another person, for any reason or no reason, but all of us must believe in a person’s rights to believe and behave as they do, within the confines of the law.  That means if you beat up someone, you go to jail.  That means if you don’t want “others” in your town, suck it up or move.  It means that you are responsible for your choices and your destiny and there are no scapegoats for your sorry life.

The beauty and reality of a free society. 

These tenets are under siege.  And I will fight for them.

THE REST IS ADDRESSED TO WHITE AMERICA WHO VOTED FOR TRUMP:

I am white, educated, and reasonably well-heeled.  My immigrant grandparents struggled and so did my parents.  And now my siblings and I are successful. We stand on the shoulders of two generations.  And our children will get everything we can give them.

Because we know where we came from.  And the gift that is this nation.

Too many people after too many generations here forget the gift of this nation.  And then chose to despoil it with a con man and grifter.

Let me be clear about something:  if you are white and voted for Trump and you take assistance — food stamps, medicaid, or go to the emergency room for medical care — you are a scourge on the society.  You depend on me for your care.  And that aid ended with the election of Agent Orange.  And I am good with it.  Because immigrants deserve the promise of this country more than those born into it who feel more entitled than grateful.

Maybe Reagan poisoned you with the “welfare mothers driving Cadillacs” which was a whistle call and untrue.  But if you had any self-esteem or any drive, you would have seen through that.  You are lazy and you think white privilege will grease the wheels. 

Would I give you a managerial job if you failed 6th grade?  Are you kidding me?

You are so interested in entitlement reform?  Most of those who receive benefits are white (and Republican).  I am good with it.  I don’t want to pay for you.  You were born with more rights and privilege than anyone else in the world.  If you and your family blew it, it is on you.  And because AHCA was passed, you need me to pay for your ER visits.  Instead of making me pay those taxes to provide those services, I will get a tax break.  Thank Paul Ryan and Agent Orange.

I am tired of you.  Get a job.  Harvest the fields.  Like my grandparents who worked in sweat shops and my parent who did odd jobs from when they were 5 years-old. And studied when they could and learned about the world.

I will contribute my tax savings to people like my parents and grandparents who struggle to make it here so their children will have good lives.

No, I have no sympathy, except for the coal miners who will lose their medical coverage now.  But if they voted for Trump and the Darwinian view of life, then, well . . . .

Don’t cry to me when you are turned away from the ER. 

I voted for Hillary. 

Which meant more taxes for me. 

To take care you and everyone else. 

Because I believe in the promise of America. 

But you don’t believe in that promise.

Because you elected Agent Orange and a Congress that would repeal ACA.

I believe in the sanctity of human life – from inception to the end.  My heart bleeds for every unnecessary death and for every injury or malady that can’t be repaired or remedied.  I can’t even read about a child dying without tearing up.

Oh, and you should know that I am a lesbian raising a child with my partner.

You may think that is a sin and beyond the pale.  And you would be wrong.  We live a life with the same principles as in my parents’ home: work hard, be compassionate, be humble (here is where I fell down), and pay it forward.  I would compare my charitable giving and my civic involvement to make everyone’s life better against 45‘s in real dollars and as a percentage of our incomes.  And have it posted.

But, you and I, we are very different: my family and I take responsibility and work for a better world.  My family and I don’t wallow in what is.  My family and I are forward-looking and seek to heal the world.  The latter a commandment in my religious tradition.  I am not a person of faith, but I believe in the wisdom and directives of our ancients.

And as far as sins go, what you all allowed –i.e., electing 45 — puts you in a Hell that even Jesus didn’t anticipate.  Jesus is on my side.  And you know it.

So, if you obeyed even just these three commandments, how did we get here?

Love your neighbor as yourself.

Don’t bare false witness against thy neighbor.

Do not covet that which is your neighbor’s.

Yeah, I thought so.  You screwed up.

Daddy’s Angels (but our devils)

Once an elder needs care, it is not so easy as having loving people come into the house and care for him or her.

No, you have given birth to a family unit, with individuals perhaps older than you.  Your elder has new kids.  No, this is not science fiction. This, THIS, is the new normal.

Dad has four aides — two share the 12-hour day shift and two share the night shift.  Everything revolves around his care.  Dad is a lovely man and three out of the four aides have become attached to him, and he to them.  The fourth one does her job.  And that is all we ask.

But in the fight over who is the favorite and who takes the best care of Dad, there is palace intrigue.  They check up on each other and rat out each other.  As if Dad is some power broker, rather than a jovial, yet clueless man.

So, these last 14 months, I have had to intervene, referee and speak with any number of supervisors in order to keep Dad’s routine the same.  Because we, as a family, do not believe that a night aide who is competent, but not warm and fuzzy, should lose her job because she and Dad don’t “connect”.  But there have been “cleanliness” issues and Dad is decidedly uncomfortable with her.  Reasons enough to make changes but we resisted, out of respect for a person’s right to earn a living.

Now, there is a battle royale between the aide of whom Dad is most fond and the one of whom he is least fond.  For those of you who are old enough to remember, think Linda Evans and Joan Collins in Dynasty.

You can imagine how little patience one can have for this when it is playing out in my life.  Sometimes I wonder if I am on Jerry Springer, i.e., Shit Time in the Day Time.  (Is he still around?)

In the end, we set out clearly both our priorities and must-haves with the agency.  And what will make us go to another care provider.

I want everyone to keep their jobs.  But Dad needs to be happy.  And so I was forced to prioritize jobs and positions.  In life, my parents have erred on the side of preserving peoples’ jobs, even if it meant less for our family.  I followed suit in the Great Recession (some called me a schmuck, but I can look in the mirror and only worry about wrinkles).

The problems started almost at the beginning, and I needed to make a decision.  If the internecine battles cannot be resolved, then I voted one off the island.  (Or whatever, the reality TV lingo is; now you know the cerebral punishment that is worst than death.)

I am good with my decision.  But I am sad about having to make it.  But I will stand by it, especially face-to-face with the reassigned aide.  Because I owe the aid that respect.

Maintaining Dad’s world is too important.  But not without unintended consequences arising out of new situations and relationships.

Nothing in this life is easy.  But the saving grace is that Dad doesn’t even have to know.

He can walk blithely on, happy and kibbitzing with his attendants during the day and sleep as well as possible in the night.  And, at long last, after all Mom and he did for us, this is the least we can do for him.

But I didn’t know making this type of decisions in this economy was in the bargain.

Dad is fine; my soul is diminished in the process. This is the reality of caring for the elderly and the infirm. The new world that needs the brave (and the compassionate and the guilty).

ULOB, Part II

SIDEBAR:  Visiting day at camp with SOS was great.  More about that later.

On Saturday evening, I spoke with SOB about ULOB’s status.  It was critical enough to get in the car at 6pm, after a long (and wonderful) day with SOS at camp, to drive 5 hours home to New York City.

End of life can be harsh, unforgiving and terrifying.

Today, I met SOB at the hospital at 10am-ish.  I had packed my gym clothes, planned to stop by the office, see Dad and get ready for a Sunday late afternoon wedding.

But ULOB didn’t look so good.  I felt a foreboding aura.

Life in the hospital continues to move along, no matter whose heart is still beating.  At 10:30am, in his room, the intercom interrupted my panic.  “Mildred, please call the nurse’s station.  Mildred, please call the nurse’s station.”  

After SOB called POULOB to say that things were looking grim, I decided to walk around the corridors of the hospital, for “fresh” air.  A disturbed woman was walking around and I thought I could help her by pointing her to the other side of the floor — the Addiction Unit.

SIDEBAR:  I later learned that what I surmised was a drug issue was actually the absence-of-psyhotropic-drugs issue.

She found her former girlfriend’s room.  But the putative father of the former girlfriend’s baby was there as well.  Apparently, the disturbed woman had put her former giirlfriend in the hospital.  Upon seeing the boyfriend/ex-boyfriend, the woman grabbed a mop as a weapon.  When that weapon was taken away, she reached for a glass vase and threw it at the former girlfriend.  And then another.  SOB was within range and I could not get to her — there was a battle line between us.  Security, the cops, crazy calls from the jilted woman threatening to kill the ex-girlfriend patient followed.  “She’s coming back.  She ain’t stupid.  She’s psychotic.  Why you think I broke up with her!”

And, in a room in the midst of a war zone, lay my uncle not so gently dying of complications from a fall.  His lungs were full of fluid and no antibiotic was helping.  He was not lucid.

12:00 noon:  “Mildred, please call the nurse’s station.   Mildred, please call the nurse’s station.”  

SIDEBAR:  Who is Mildred and why is she MIA?  And why did her parents name her that?

ULOB’s breathing became increasing labored.  Sometimes he looked like he was in sheer terror and I told him to squeeze my hand, and he squeezed so hard that I felt faint.

Other times, I think he was in a different time and place.  At one point, I said, “Am I Elsie?” referring to my mother, his sister.  He nodded and calmed a bit.  He had happy memories with Mom.

But mostly there was desperation at not being able to catch his breath.  Regardless of the oxygen in his nose and the medicines coursing through his veins, ULOB couldn’t swallow, couldn’t breathe easily and couldn’t shake the pneumonia that developed in his lungs.  He was in a death spiral.

1:00pm:  “Mildred, please call the nurse’s station.   Mildred, please call the nurse’s station.”  

Mildred, for G-d’s sake, please answer the page or quit.  You have been AWOL for hours!!!

POULOB arrived in the time it took for my to drive from the middle of Cape Cod to Stamford, Connecticut.  (3 hours.)

ULOB perked up when POULOB came.  POULOB didn’t want to understand the severity of the situation.  She wanted to know what to tell his friends when she went dancing tonight, as ULOB and POULOB often did.

SOB, POULOB and I took turns holding his hands and reassuring him.

3:30pm: The ex-girlfriend patient was at the nurse’s station retelling the story to anyone who wanted to hear what happened.  Needless to say, many patients in hospital garb with open flaps were in the hallway to hear the story that proves life is a carnival (i.e., a freak show).

5:00pm:  “Mildred, please call the nurse’s station.   Mildred, please call the nurse’s station.”  

Really, Millie?

5:30pm:  ULOB had some chivalry left in him.  He didn’t fall of the cliff, as it were, until POULOB left.

SOB and I held his hands and whispered gently in his ears that we loved him and he was safe as his breathing got shallower, and as he got less agitated, thanks to modern medicine.

6:00pm:  “Shia, wakey, wakey!!”  ULOB’s roommate was asleep for too long and needed some exercise.  Earlier, another inmate had come by, looking to be amused by the man who talks to himself.  But Shia was sleepy, sleepy.

Note to self: if there are no private rooms, go to a different hospital.

In the cacophony of the world, ULOB’s breathing got slower and the blueness of death was in his fingers.

Slowly, gently, quietly, ULOB left this world living life on his terms, except for these last ten days.

Time of death: 7:15pm.

Rest in peace, Uncle Larry.

Tired of coughing

I have been coughing for 4 weeks (although not contagious for three of those weeks).

But the sleepless nights with incessant spasms of hacking cough have taken a toil on my health and sanity.  (And the couch isn’t so comfortable.)  I am sick and tired of being sick and tired and my malady is really just a supersized stubbed toe.  So, it is hard to take up anyone’s time with it.

SOB insisted that I see Dr. Mary and accompanied me to the visit.  Dr. Mary listened and said, “It sounds like pertussis [whooping cough], but if it were pertussis, you would have infected half of the city by now.”

Reassuring.

SIDEBAR:  Why do people call it whooping cough?  It sounds so deceivingly innocuous.  Reminds me of when I was a kid and everyone was talking very heatedly about Youths in Asia and Men in Jitus.  Why were the Youths in Asia being killed and the Men in Jitus having very serious brain stem problems?  Only later did I have that Eureka moment:  euthanasia and meningitis.

From a breath test, she was able to determine that this is one big allergic response. But to what is still an unknown.  She set me up for blood tests and xrays, etc.

To relax my lungs, she put me on steroids [Just call me Blogroid] and said, “this will make you puffy and really hungry, so you might gain weight.”  Wow, really? How come when men take performance enhancement steroids, this doesn’t happen.  This is totally a bummer and gender bias to boot.

But that is not all, “You must rest your vocal chords.  They are very strained.  You cannot speak [or cough] unless necessary.”

But Dr. Mary, I am a lawyer — as in “have mouth, will speak”.

I cannot even imagine the glee with which so many people will receive this news.  Already, The COB is doing a little jig in the office.

But I can kick box.  So, be afraid.

When Life Alert Calls

As I walk upstairs to The COB’s office to consult about a deal, my cell phone rings. It is a California number.  I am suspicious; I assume that it is a spam call.  At the same time, I get an email that I have voicemail on my office phone. 

After some confusion, I ascertain that the “dispatch center” calling from California is Life Alert.  Oh, no.  Dad has Life Alert and Life Alert is on the phone.  My heart is now in my throat.

The dispatcher advised that the fire alarm went off in Dad’s house and he did not answer the Life Alert intercom, his house phone and his cell phone. The dispatcher already called the fire department. I get off the phone with Life Alert and retrieve my voice mail from SOB. Cool as a cucumber, she says, “hey, [Blogger], it’s [SOB]. Hope all is good with you and the family. [Pause] Listen, Life Alert called me and told me [and she recounted the above].  Anyway, call when you can. Bye.”

Wow, SOB could describe the horrors of war and make it sound like a bedtime story. But even before I could call her back, she called again. Because SOB panics gracefully. Even from across the Pond in London.

Dad’s cell is useless; he can’t hear it and, if he does, has no idea what the beeping is for. His attendant doesn’t answer her cell. So, I keep hitting redial until she answers.

I reached the attendant just as Dad and she were rounding the corner and seeing the firetrucks.

SIDEBAR They were at the library. Before they left, the attendant put fabric softener in water and heated it on the stove, to freshen the air. Then Dad wanted to leave and she forgot.

The pot was burning on the stove and made a lot of smoke and a noxious smell.  The firemen opened the windows and all was good.  While I was talking to the fireman, I hear Dad’s attendant in the background, repeating: “He didn’t do it.  It is MY fault.”  I love her for making sure that everyone knew that it wasn’t Dad’s fault.

So, I spoke with the fireman who was lovely, with Dad’s attendant who was so upset, and with Dad who had no clue.

Since we love Dad’s attendants, I told her that I would be happy to get an attendant for her as well so the attendant could watch her minding Dad, but we just can’t afford it right now.  For now, she, like Dad, is not allowed to operate any electrical equipment until further notice. 

SOB spoke to the attendant and reassured her as she was feeling so badly about it all.  I called later and she was feeling better.  Dad?  Still confused.  A typical day.

So, everyone was safe at all times, except for SOB and me. Both of us were out on the ledge.

At least I have blog material.

 

 

Minding the Elderly Can Age a Person

Today, the paternal side of the Blogger family buried one of our own.  My cousin was not even 37.  Family members spanning nearly a century — 4 generations — were present, as if to beam a harsh light on the tragedy that my cousin would never grow old.

BOB, who flew in from Texas for the funeral, thought that we should visit Mom’s brother, Uncle L., the last surviving uncle of blogger (ULOB), and that he should meet ULOB’s paramour (POULOB).

SIDEBAR:  Why not make it the day a total beat-down?  In for a little hearbreak, in for a trifecta.   Like that penny and pound thing.

This was so last minute.  And I didn’t want ULOB to think that BOB would come to town and not see him (even though that does happen from time to time).  So, I call ULOB from the car on our way back from the funeral and tried to frame the narrative:

“Hi, Uncle, it’s [Blogger].  [BOB] just came into town at the last minute for a [paternal Blogger] family funeral.  We didn’t want to call to early to wake you [ULOB sleeps until noon].  We would like to stop by and visit this afternoon.”

“Can I invite [POULOB]?”

“Of course.  Does 4pm work?”

“See you then.”

Great.  Death. Destruction. Tears. Lamentations. And a visit to the apartment that is gross by the slums-of-Calcutta standards.  I guess I am not getting a nap today.

BOB and I walked [3 miles] to ULOB’s apartment.  It was good to talk to BOB.  I don’t think we have an hour to talk just the two of us in three decades.

But, we were running late.  So I called ULOB’s apartment.  No answer.  Hmmmm.  Odd.

We arrive at his building.  He lives on the fourth floor of a five story walk-up in what is formerly known as Hell’s Kitchen.  We buzz his intercom.  No answer.

I call again his phone again.  No answer.  BOB leans his palm on ULOB’s buzzer.  I go inside the first door (which is never locked) and start buzzing every apartment in the building until someone lets us in.

We walk up four flights to his apartment.  There is a radio blasting.  We go inside his apartment (don’t you mind the details), expecting to find a body.  BOB says helpfully, “you know, bad things happen in threes, so this would be event no. 2.”

SIDEBAR: BOB needs a refresher in the Blogger family protocol, as in “unhelpful comments in scary, potentially life and death situations are punishable by a different kind of scary, life and death situation.”  Rule No. 3, for those of you following in the handbook.

The place looks like it has been ransacked.  BOB is a little rattled, but I remind him that that is usually what the place looks like.  I am still calm.  I start to look around for a body.  The stench of 54 years of filter-less cigarettes would cover any smell of a decomposing body.

No body here.  Thank G-d.  But nobody here either, so he must be dead in the street.

BOB and I decide not to panic.  Instead, we sit at an outdoor cafe doing our version a TV crime drama stake-out, only with cocktails.  I watch his building while BOB looks for him along the street.

We leave countless more messages on ULOB’s message machine in case he shuffled in while traffic was stopped and a bus obscured my view.

ULOB doesn’t have a cell phone.  We don’t have any contact information on POULOB except her address and her phone number is unlisted.  (I tried.)  This is the time when I wish I didn’t avoid information about her and just embraced her, regardless of their relationship’s beginnings.  Sometimes, principles just bite you in the ass.

SOB knows POULOB’s phone number.  Except, SOB is in London. My phone is running out of juice. And I am rattling off phone numbers to BOB as my phone dies.

BOB calls SOB, “Hey, [SOB], [ULOB] is a no-show at his house.  But he isn’t dead IN his house.  We need POULOB’s number.  Oh, I love you, [BOB]by.”

We abandon our stake-out after 1.5 hours.  Police work is not for me, unless lubricated with a nice cabernet.  BOB goes to Dad’s to have dinner with him.  I go home, preparing myself to call hospitals or go to POULOB’s house and knock on the door.

I get home. The doorman hands me a message from ULOB and POULOB. They were here, thinking the gathering was here. The message says they are at a nearby restaurant. I RUN there.  We clear up the miscommunication.  POULOB says ULOB told her we were having a gathering either at 2, 3 or 4.  They opted for 4:15. Ok, I am not so devastated about missing them.

I say, “we were at a funeral, although I could understand the mix-up”.  Wow, cabernet is the opposite of a truth serum.  Because, who, in the world invites guests, who don’t know the deceased, to a post-funeral gathering?

We resolve the following things:

  • ULOB needs a cell phone.
  • POULOB needs all of our contact information and we, hers, because she is here to stay.  And she does take really good care of ULOB.
  • Nobody dies on my watch.  And when I say nobody, I also mean no body on my watch.

I did remember to text SOB that we were really sorry we gave her a heart attack, especially when she would get care in the UK hospital system.  I called Dad to tell him to tell BOB that all is well, but Dad already started cocktail hour, so at some point I ask him to pass the phone to his attendant, because I could not live another moment in loopy land.

This Abbott and Costello afternoon happened on the heels of the real tragedy — my young cousin’s untimely death.  Today I experienced universal grief, elderly confusion and existential anxiety, some at both ends of the spectrum of life.

For now, I am grateful to be in the middle.

 

More on role reversal

My daily mantra:  “It is what it is”.  Nope, not the serenity prayer.  Serenity doesn’t accomplish the gritty tasks of daily life.  And the serenity prayer implies I am good with the some of the things that children or nieces and nephews should never have to know about their elders.

First, family secrets are meant to be kept secret.  That is why they were secrets in the first place.  Because no one would understand and the younger generation would be saddened.  Not horrified (because this is 2013) but saddened about these lives as they had to be lived.  (No, I am not talking about Dad.  OTHER relatives in our care.)

The list of things I don’t need to know about my relatives (not my Dad):

  • that the bed linen was changed some time in the early part of the last century;
  • that elders can continue live in filth, even if they are part of “good families” and fight change;
  • that testosterone levels are low (ok, this is a good thing); and
  • every little detail about urinary tract and colon activity, with visuals.

Now comes the mantra:  “It is what it is.”

And SOB and I are the new sheriffs in town and so we need to invoke base level sanitary standards, base level responsiveness to our calls (other than just in times of crisis), and full capitulation to our will and our loving vision of how they will live out the remainder of their lives.  Because, although they didn’t ask for it (exactly), they understand that they need us.

Here is my bottom line:

If I need to know family secrets that disgust me and deal with facts on the ground that gross me out, there is a quid pro quo: Disobey SOB’s and my benevolently despotic decrees at your peril.

Because “it is what it is” is more than a phrase to live by; it is a threat AND a promise.

 

Lunchtime in the Coffee Shop of the Living Dead

I went down for a quick lunch with Dad.  We went to a nearby place that isn’t good, has bad service and smells like a bad diner.  But it is popular for the over-senile/decrepit set because it is a close walk from many once-bustling-high-rises-now-de-facto-old-age-homes (welcome to the Sutton Place area).   At the diner, there is a special area for canes and walkers, once the elder has been seated.  There are less chairs available than one would think necessary because — well — the proprietors need to accommodate wheelchairs. 

Dad looks better than most there. 

As we are looking at the menu, he says, “I don’t remember when I last had a hamburger.” 

Sidebar:  I think BUT DO NOT SAY, “Of course, you don’t remember, Dad.  It was last Saturday when we had this same conversation at the other diner, you know the one that is far enough away so there are fewer undead people there?  You had a hamburger.”

Still, Dad sometimes surprises me by retaining information from one day to the next.  “How was POB’s job interview?” he asked.  Whoa, POB told him about it on Thursday.  Awesome job, Dad.

I know many of the peope in the Diner of the Living Dead from the neighborhood.  I grew up here.  One, who is Dad’s friend, came over and wanted to talk to me only, almost ignoring Dad and Dad’s health aide (are people invisible?). 

Odd because he is usually a warm and friendly, if homophobic, guy. 

He was clearly in despair.  He needed home heath care information for his companion of decades.  Her kids were handling matters without talking to him and he didn’t know what to do.  He didn’t even bother to brag about his daughter’s life as a married, wealtlhy, successful, procreative heterosexual.  Now, that was a red flag for how the situation has deteriorated.

I listened and gave him what information I could.  He seemed unable to cope with the little I was able to offer.  I will follow up with him but I think he needs care, too. 

Sidebar: I might have to call his daughter.  I will start the conversation with, “as a married, well-to-do (before the crash), successful (before the crash), procreative (after a fashion) homosexual to you, the person I was supposed to be: get your ass back to New York and take care of your dad.” 

After the conversation, Dad said in a sad but resigned way, “he doesn’t look or sound so good.”  I nodded. 

And then I screamed so Dad could hear (relying on the deafness of those around me):

“Dad, you are doing so much better and you had a brain bleed that shorted out some electricity!!” 

We are nothing if not blunt.

This Week in Dad

Over the course of the week, Dad’s physical and mental state has improved at a miraculous rate.  He is the comeback kid. But he will never be the same or independent.  He tires quickly and when he is tired, he is confused.  

I learned many things this week about my father and me. 

Lesson 1:  I am in mourning for the end of his independence. 

He still thinks he can be independent again, which is uplifting and heartbreaking in the same moment.   

Lesson 2: Temporary is as temporary does. 

Dad kibbitzes with his home attendants.  He seems rather fond of them and they seem to dote on Dad.  But there is only one person with whom Dad will share a home and Mom is gone.  So, while these home attendant are a diversion for now, he views the situation as a temporary, necessary intrusion into his life.  But, I know temporary lasts until, looking back, you realize it was permanent.   So temporary is fine, as long as it is, in fact, permanent.

Lesson 3:  Unconditional love is tested both ways when a parent is declining.

I imagine we will have numerous conversations about whether and how much assistance he needs and some will not go well.  At some point in his miraculous recovery, my fiercely independent and proud father will be displeased  — righteously indignant, actually — at being told that the 24/7 care will not end.  And he will not understand our insistence on it.  And deep down he will know that we are in control.  Will he know that we are doing what we think is best and that we do what we do because we love him?  I never want Dad to feel let down by his kids.

Lesson 4:  I need to be the Grinch who stole Christmas.

It is my job to look for the chinks in his armor, to make sure that we have the systems in place to control for his deficits.  While I can be thrilled at his recovery, I cannot get lulled into a relaxed mindset.  His safety depends on my being the doomsday sayer.

Lessons 1 – 4 all together:  Being a parent to my father is among the scariest, saddest and most important roles of my life.

 

Things I learned today (and Phoenix was awesome)

I learned why the health care debate is bullshit.  It is sterile and removed from reality.

When a family member is ill and you cannot care for him or her, you must rely on strangers.  Strangers are not always reliable; not because they don’t want to do their jobs but because there are so many in need that your loved one is not necessarily the first on the list.

So, health care is flawed.  It is a morass.  It is frustrating.  It isn’t the well-intentioned attendant’s fault; it isn’t the overwhelmed agency’s fault; it isn’t the government’s fault.  (Sure there are bad people out there, but let’s discount that factor for a moment.)  Illness is at fault.  It is a problem that we are not all health care professionals who can leave our jobs to care for our loved ones.   Forget Federal Medical Leave Act during bad economic times.  Most people are too scared that there will be some other pretext for the employer to fire them.

When you delegate, you lose control of the outcome.  That is why there was poison in toothpaste imported from China.  That is why we throw away electronics when they stop working because it is cheaper to buy new than to fix the old.

People don’t fit into an economic model.  There is value in keeping people healthy; there is joy in adding quality to the waning years.  There is pain when science keeps the body going after the mind and soul have left.

I have lived the cushy private system for only a few days and it is hell.  When a patient can’t help him or herself, then it doesn’t matter who is providing the service.  If you are lucky, you can telecommute and keep an eye on the situation and reassure your loved one, with your words, hell, with just your presence.  But most people are not so lucky.

So, don’t talk to me about vouchers or Medicare or the Great Solution.  When your family member is in need, there are no good answers.

DAD UPDATE:

Dad remembered my name today.  He was true to his word last night.  He also remembered a host of other crazy facts and information.  We all thought he earned that scotch tonight with his hors d’oeuvres.  (Ok, let’s be honest, club soda with a splash of the good stuff.)  Clap if you agree.  (Yes, we hear you.  Thanks.)

Don’t bet against Phoenix.  He is roaring from the ashes.