Fatigue Fatigue

Election fatigue.  Fiscal Cliff fatigue.  War fatigue.  War hero sex scandal fatigue.  Bomb Iran or not fatigue. Crazy politicians saying psycho things fatigue. Human-engineered natural disasters fatigue. Finger-pointing fatigue.  European debt crisis fatigue.  Stock market sinking fatigue.  Living in precarious economic times (controlled by others) fatigue.  Dealing with a failing parent fatigue.

Wow, I am tired.  If one or more of these things come to fruition, it (or they) will dwarf the others and can send our nation, our society and/or just me into a tailspin.

In fact, I was too tired to get all excited that President Obama was re-elected.  I was more relieved that the months of uncertainty were over.  And BOB, who lives in a Red State, wrote a poignant Facebook post just before the election that made me re-think any self righteous glee after the president’s re-election.  BOB wrote:

I don’t post, particularly about politics. Others do, for whatever reason. I am certain that whoever wins the election tomorrow, and his supporters, will continue to be reviled and mocked by those that did not vote for him. I do not care who my friends vote for and will respect the fact that they believe what they believe. I do not try to lobby them and I ignore any efforts to lobby me. The diversity we have is what makes us a unique place in the world and what makes no sense to one makes all the sense in the world to another. So, my hope is that on Wednesday morning we get back to (or start) respecting each other, doing good in our own way and not just complaining about what others are not doing the way we see fit, and working together instead of bullying and demeaning, recognizing that it is too late to take all of that money that was spent (read: wasted) campaigning on all levels to help feed hungry mouths here and elsewhere around the globe. And that’s all I have to say about that.

BOB is a good and smart man.

But Nate Silver (fivethirtyeight.com) is my new pin-up boy (ok, so many levels of complexity there).  Nate:  you have gotten far too many love letters from straight and gay men and women for a numbers geek.  I think Brad Pitt’s agent is trying to have the exact tally sealed.  It is a Hollywood thing.  And that guy with a girl’s name who is really popular now is soooooo not loving you right now.  Neither is Karl Rove and that is just fine with me.

But, I digress, comme d’habitude.

I am so tired of our national issues being treated like a really bad reality TV show that masquerades as news.

I am hungry for good news, for hope, for public service without political advantage.  I am hungry for good things happening to good people who work hard and do the right thing.  I am hungry for a commitment by those of us who have more to share with those who have less.  Not wealth redistribution; rather, compassion.

Good policy and hope come from searching, sometimes emotional, debates about our national values and our common future and how we best meet the challenges ahead.  It involves compromise and respect.  It is not a winner-take-all game.

Until then, the fatigue will slowly, but surely, become indifference or powerlessness.  And, assuming it spreads beyond just me to the greater populace, that will bring a good and mighty nation to its knees more surely than any war or any economic crisis could ever.

Homeward Bound

POB spent some time with Dad yesterday.  He kept telling her that he doesn’t feel as if he is home, even when he is sitting in his living room.  His living room for 50 years.

Often, he says, he gets confused and wonders: “How am I going to get home from here?”  And then either he remembers or his aide (or one of us) reminds him, “you are home.”  Then he relaxes.  But this repeats throughout the days.

Last night, when POB told me about the conversation, I had an unusual panic.  Does “home” mean something different for Dad?

Even though this has been Dad’s home for more than half of his life, Mom isn’t there, and his memories are hard to tease out of the recesses of his mind.  His kids visit, but we don’t live there anymore.  There are lovely aides helping him, but they are strangers.

Daddy, please stay just a little longer with us.  If “home” is some place else, don’t go “home” just yet.  Ok?  Stay here with us.  Because here is still where you live.

Filling the adult shoes

When we were young, my Dad always wore wing-tipped shoes — brown or black. 

 

 

 

 

 

He had one pair of Keds sneakers and several pairs of tuxedo shoes.  Maybe he had another pair of shoes for the weekends, but this was the 1960s after all.  And a man of my father’s generation didn’t wear jeans until the late 1970s and sneakers — gasp — only when old-style shoes were too tough on his aging feet.  Dad and his wing-tips.  That’s what men of a certain age wore.

I remember the weekly walk from synagogue after Sunday school and Dad’s racing me the last block home.  He wore his wing-tips and I wore my Mary-Janes (which I hated).  Dad and his wing-tips.  That’s what men of a certain age wore.  Even when playing with their kids.

Dad and his wing-tips.  I used to try to walk in them after he had taken them off and put on slippers (another thing that people haven’t done since the 1970s).  They were so heavy and unforgiving.  I used to clomp around and fall and get up and keep trying. 

In the early 1990s, Italian designers started selling women’s wing-tipped shoes.  More refined than the clunky saddle shoes of the prior decades.  I have several pairs in black and brown, although I went for a simpler look:

 

 

 

 

 

 

 

 

For years, I didn’t wear them because I thought I looked too dyke-y in them.  Since Dad’s fall, I wear them again.

If I am going to be as good and kind to him as he was to us, I need to walk in his shoes.  The shoes he wore when he had all the answers.   

 

Out of the darkness into a warming light

Some times, people think I am too open about my emotions and observations.  And talking about sad things can really depress people.  And if you only talk about the stuff in your life, not only do you lose friends, but you risk losing those essential human traits of empathy and compassion for others and what inevitably are their challenges, fears and bags of trouble.

Here is one of the great surprises.  Many of the friends and family who have held me close (physically and figuratively) have also shared their past and present sadnesses and allowed me to try to comfort them or share in their memories.  And I am grateful.

I guess we all walk the paths of crises, loss, joy, exhilaration and near-misses, but not at the same times.  Friends and family allowed Dad’s crisis to open me up, rather than close me down.  And it is hard not to be joyful about his long and happy life.  And it is hard not to feel the heartbreak of others whose family members aren’t as lucky as Dad has been.

Life is a journey.  Success is having made that journey surrounded by loved ones and friends.

Stuck in the middle

Wherever you are, you need to be somewhere else.  And whatever you are doing wherever you are, it is a little inadequate, a little late and a little unfocused.

This is the life of the sandwich generation.

I called Dad this morning and went over the plan for the day and who was visiting and what he needed to accomplish. 

“Are you coming?”  

“No, Dad, not today.  I am spending the day with SOS and we are going to the Met.” 

“You are choosing a museum over me?  Tell my grandson I am so sad that I might cry!” Dad said jokingly. 

Jokingly (but not fully joking) and quite manipulatively.  We have played this game before.  Dad doesn’t want me to feel bad after I hold firm to my decision.  He doesn’t mean to make me crazy or sad.  

But now it is different.  Dad is still full of life and he is being hemmed in by things beyond his control.  He is a prisoner of a few block radius around his apartment and the vagueness and forgetfulness of his mind in areas where he had his brain injury.   So, I want to cry and throw up.  Before this, the man could play a concerto on my emotional buttons.  Now, he is maestro.

But SOS is my priority.  We went to Arms and Armor because boys love their implements of destruction.  And, certain things about men don’t change from the middle ages to the present, as noted by the expanded “pocket” on this particular armor.  Front angle and side angle.

 

 

 

 

 

 

 

 

 

Too funny.

SOB and a family friend had lunch with Dad.  SOB did strong work this weekend, covering the “Dad call” so that I could chill a little and catch up on family and work.   I have the “Dad call” part of this week and next weekend. (We use medical terms because, as Jews, we act as if we are all doctors, actual licenses being irrelevant.)

And I will go over tomorrow for cocktail hour.  And no doubt he will want to dance a few turns with me before his make-believe scotch.  That man still dances better than I ever will.  And he remembers the songs and tunes of the Big Band Era better than most people.  He is quite a remarkable man.

So we will see whether he can go for a longer and further outing this week.  Maybe even to the Upper West Side for brunch next weekend. 

Speaking of sandwiches, today I had a pastrami and corned beef on rye.  Because if you are stuck in the middle, taking care of the older and the younger generations, a little soul food goes a long way.

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.

 

Uh, oh, another “Dear Mom” blog

Dear Mom:

I know you are watching the events as they unfold down here on Earth.  Dad is remarkable in the ability of his body to heal so quickly — and just days shy of his 92nd birthday.  Ok, the mind is another thing.  That is a bit of a mixed bag.

Dad’s week has been packed with life and all of its emotions, from heart-breaking to uplifting, from triumph to quiet desperation, from funny to painful indignity.  And we, the kids, whether in person or on the telephone, have been on the ride along with him.

We went from feelings of sheer terror in taking Dad for a walk around the block (would he fall?) to POB’s dancing with Dad in the house to the sublime — a soft shoe routine in the supermarket, he with his cane (and his home aide ready to catch him) and I with a new mop that we desperately needed.  But later he couldn’t get up from the table without help and was dizzy, so he needed a long recuperative nap.  So, we will do soft shoe when we can, but we aren’t ready to go on the road. We do what he can do and no more.

We spent days going through pictures, reminding him of the family.  He is getting really good at this.  He remembers you, without any sort of coaxing.  One of his home aides told me that Dad talks about you and how he is still married to you and still in love with you, no matter that you died 10 years ago.  He told her the secret — that you appear somewhere in all his paintings.  He knows your spirit lives in the house.  And, of course, your portrait remains as evidence that this is your home.

In a weird way, I think that the home aides are a blessing.  Dad can talk to them all day.  Now I realize what life has been like for Dad these last few years.  If Dad can’t go to the studio to sculpt (he hasn’t been able to for a few months) and he isn’t with us on the weekends, the days between are deafening silent and slow.  I wanted to cry for his loneliness.  But now he sings for his home aides, offers them a cocktail (which they refuse) and the house has noise.

But there are hard moments.  Moments filled with the indignity of aging and a child having to care for a parent as if he were a baby.  And, when he is discombobulated, the air seems to fill with a toxin that hurts my lungs.  There are also less profound crises, like the day there were no bananas for breakfast and Dad was not strong enough to go to the store or be left alone.  Imagine, a reasonably successful New York lawyer unable to answer client emails because she has to bring bananas for breakfast.  Still, he asked, “how much a pound did you pay?”  “Before or after I add in the cost of the cab to hand deliver these to you, Dad?”

At least today, there was levity amidst the crazy talk.  Aunt Glue and Cousins J and K came to visit.  Aunt Glue and Dad were both a little off, but they enjoyed their conversation.  The rest of us didn’t quite understand the conversation, but I tried to let go of reality and roll with it.  Cousin J tried to correct Aunt Glue’s somewhat vague statement, and I asked her, “at this table, what does it matter?”

Aunt Glue and Dad, the remnants of our greatest generation, stronger in body than in mind, gained fortitude and joy from each other’s presence.  Aunt Glue is the only one alive who knows to call Dad by his original, Yiddish, name, Nachum.  “So, Nachy”, she said, “tell me all.”  I wanted to live in that moment because she has said that in the same way for as long as I have been alive (and longer), when they were strong and infallible and blazing the frontier.  When Dad was Dad and you were alive.

At least Dad has you, always.  As do we, your children.  But, in these moments, I wonder why I had to grow up.  I love you, Mom.  And I love Dad, come what may.

Love, Blogger

 

 

 

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.

Phoenix rises, then stumbles. Repeat.

Take anti-nausea pills before reading.  It is a little like being a castaway at sea.

Dad came home yesterday afternoon.  He was relieved to be home.  There is an amazing “muscle memory” about being home.  He knew how to motor around the house to find the things he wanted even though he was wobbly on his feet and could not put the words together to talk to us.  Also, we ordered a wheelchair, a walker and a cane because we didn’t know his needs.

Shortly after he got home, he wanted very much to call the United Jewish Appeal but the reason made no sense.  And it was the Sabbath.  His frustration was rising and logic wasn’t working.  So I dialed POB’s cell and I said (actually, I was desperately directing her), “Dad needs to speak to the UJA, so pretend.”  I passed the phone to Dad, and turned up the volume so SOB and I could hear.  “Hello, Mr. [DOB], this is “Rachel” from the UJA.  Thank you for your pledge . . . .”  She went on until Dad said, “ok, thank you very much.” Dad was satisfied and almost looked as if he would nap . . .  Nah, no luck.

Sidebar:  POB should be nominated for an Academy Award, since she performed while on a crowded bus with SOS, who was quite confused.  (She told him that we were testing his phone skills and SOS loved the cloak and dagger of it.)

SOS was scared to see Grandpa injured.  We were all scared of the future.  BOB was busy cleaning out all of his junk mail and organizing recent files.  Man on a mission. We all found ways to soothe our individual terror at our new reality.

When SOS, POB and HOSOB arrived, we all gathered around and went through recent pictures to jog his memory.  SOB and I had previously gone out shopping and HOSOB brought some liquid relaxation (wine).  By this point, it was “cocktails and hors d’oeuvres” hour because that is the way one does things in Dad’s house.  Since he wasn’t so steady on his feet, we pretended to give him a “scotch” but it was club soda.  The upside of a little dementia — he thought it was scotch.

Cousin Gentle arrived later on.  By the time we ate dinner, he knew that he was surrounded by family, and very happily so, but only remembered the names of the eldest, Cousin Gentle, and the youngest, SOS.  Also, his evening attendant ate with us, so we could weave her into the fabric of the day (and she is lovely in any event).  BOB stayed until today, so at around 9:30, the rest could leave for much deserved rest.

Sidebar:  At this stage, rest is elusive.  Sleep is a non-starter.

The night was long and difficult according to BOB. And BOB looked like he hadn’t slept.

By morning, Dad was better, but still inconsistent in strength, gait and comprehension.  Dad was using the walker and BOB was playing in the wheelchair.  BOB challenged Dad to a race.  It was actually very funny to watch them go back and forth.  A little insanity amid pervasive insanity is very healing.  And it demonstrated that Dad’s personality is intact.  It is his memory that needs work.

He started to nod off after lunch and had a long nap. SOB and I went out to get supplies and some fresh air because we were either trying to keep Dad engaged or listen for any sign of a problem while he slept.  We saw this in the drug store and thought it captured our feelings — we just wanted to SCREAM out of fear, frustration, lack of control, uncertainty of the future, you name it:

And, then.  And, then.  Good ol’ Phoenix.

He woke up able to walk without any support but the real proof that Dad was Phoenix rising was that he did not go for the fake scotch at cocktail hour.  I had to put a little scotch in the club soda so there was a faint smell of liquor.  Dad was still not happy but mollified somewhat.

POB and SOS came over for a surprise visit at dinner because SOS wanted to see Grandpa and he was sad that SOB and I might be lonely and scared “alone” with Dad.

Sidebar:  I can take no credit for the soulfulness, generosity and sense of family that is in my son’s heart.  POB is responsible.

POB was talking to Dad and he had some good recall of random things.  And, he was even grousing about the fake cocktail.  I overheard this, and I said, “Dad, you have to earn that cocktail!!  Get strong, get steady, get your memory back!!”  Everyone laughed.  My father saluted me.  He knows his kids are his bosses — his essential personality shining through.

It was time for him to go to sleep. The attendant was going to help him wash up.

I kissed him and said, “Goodnight, Daddy, I love you.”

“Goodnight, my darling, I love you.”

“Can you tell me my name?”

He hesitated.  “Maybe tomorrow.”

“Ok, Daddy, maybe tomorrow.”

Maybe, tomorrow. 

In a flash

It is day three of the second worst ordeal of my life.  The first was the death of my mother.

On Monday, Dad came to Rosh HaShanah luncheon — cheery as always, gracious as always, happy to be with family, as always.  Lest you think he was an angel on earth, he did hold forth as to matters of politics, HOSOB’s painting, or poorly behaved people in his congregation.  He doesn’t say anything in a catty way; as to the latter category, he merely sees their inadequacies as explanation of their behavior.

As the lunch wound down, we all said our goodbyes.  We all kissed and hugged Dad and wished him a happy and healthy new year.  He wished us the same with a force that can only come from a parent to child.  It was not unusual.  No portents of the coming events.

SOB and I often talk about that one day when Dad is late to a dinner or doesn’t pick up the phone.  That one day when Dad leaves us.  We always wanted it to be quick and painless – a coda for a life well-lived and a fortunate man who shared his good fortune with others.

We were not prepared for a call that Dad collapsed in the street (on his way to a doctor’s appointment) and had a huge contusion on his head and some bleeding into his brain.  SOB and I rushed to the hospital.  As the day wore on, the confusion seemed more pronounced and settled.  He knows us but he doesn’t really except that he is calm with us and he trusts us.  So, there is some comprehension through the haze.  And his essential personality is intact.  He is a lovely man and the nurses are happy to take care of someone who says please and thank you and generally grateful for the help.

Dad is in ICU and there is a kids’ playroom, so the nurse gave us a ball to throw with him that first day.

Final score:  Reflexes: 90%;  Cognition: 0%; His humanity: 100%.

For day two, he mostly slept, with notable interruptions of bursts of songs from the Big Band years.  The nurses love it but, then again, they haven’t heard Dad’s limited set for as many years as we have.  Late that night he got confused and fell.

Day three started with physical therapy.  He can walk, with assistance.  He had a vague sense of POB and me.   He quickly fell back to asleep.  He slept through an echo-cardiogram (which looked good even to a non-doctor).  He had another round of physical therapy.  He walked fast and steady.  And he did call SOB by name (no, he does not call his eldest daughter “SOB”).  I hope the anti-seizure medication will wear off because it is adding to his confusion.  He seems to remember us by name now.  A few minutes have passed.  Ok, not so much any more. Reflexes: 30%; Cognition: 0.5%; His humanity: steady at 100%.

But wait there is more.  Today, the Kumbaya Guitar Lady/The Singing Nun came by because she heard that Dad likes to sing.  Fortunately, he slept through it.  We, however, could not.

While Dad slept, we spoke with nursing services and got things in order for Dad.

Then I called his long term care carrier.  After one hour of terrible telephone music, only interrupted by being transferred from claims to intake to woman from hell, I learned that long term care kicks in after 100 days of 24/7 care diagnosis.

“So, if Dad is still alive, we’ll talk,” I said.

“Oh, no, someone will contact you in 5 business days to go over everything we just went over.”

“But we just went over everything, didn’t we? And what if I am unavailable when the  call comes?”

“No problem, m’am, you can schedule the call.”

OK, I thought, let’s schedule a call for a hypothetical need that 3.5 months from now and they won’t pay the full freight. “Great, mornings are best for me —“

“Oh, no, m’am,” she interrupted, “you can’t schedule with ME.  When you missed the first call, you can call back to reschedule.  But we promise that we will make the first call within 5 business days.”

Oh, great.  “Take your time, really,” I said.

It was 5 pm on a Friday and the private nurse service hasn’t called.  So I called the service.

“Your call is important to us so please continue to hold, or if you would like, leave a message and we will return the call in 30 minutes.”

Really?  Nah.  So, I wait on the line.   After hearing those words not less than 9 times, I have imagined that the recording said, “if you are a patient and have died while waiting for us to answer, please accept our condolences.”  Actually, they were lovely when I finally reached a human.

So now we need to have someone manage the care that Dad needs.  A house manager, as it were.  We can sit with him and talk to him and feed him, but fill out the forms?  Are you kidding me?

So, SOB, POB and I chat while Dad is sleeping.  We discuss that HOSOB should bring the painting that Dad critiques and tell Dad that he won’t change the size of the car in the street scene.  Just get it off his chest.  Or maybe HOSOB can tell Dad about the dangers of fracking, because while we agree with him, we don’t need the details.  At least not now, when we can only focus on Dad and, possibly, showering and brushing our teeth.

BOB arrived and we sat with Dad through dinner and for a while afterward.  Dad was awake but confused.  BOB got to do the manly things that we girls hesitate to do so as to give Dad some privacy and dignity.

Sidebar:  BOB asked Dad if he was sleeping well in the hospital, and Dad nodded yes.  This surprised BOB because unfortunately he has been hospitalized a few times and can never get a good night’s sleep.  SOB offered matter-of-factly, “sleeping well in a hospital requires a brain injury”.  We say the craziest things when we have to wear hair-nets and sterilized robes, while sitting on in our Dad’s room in the ICU Burn unit because there are no beds in regular ICU.  All these plastic surgeons running around and my father is in bad shape and I have to stop from thinking, “should I ask someone about my droopy eyelids?”

So, what have we learned today: brain bleeds are bad but if you have one you can sleep soundly in a hospital and everyone looks ugly in hair-nets.  Was this knowledge really necessary? Nooooooooooooooooo.

I always worried how Dad would die.  But I never worried that there would be anything left unsaid.  I am lucky that way.