The Id and the Man

My father-in-law introduced me recently to the Freudian concept of the id, ego, and superego.  If you are ready to skip the rest of this post already, I don’t blame you.  I didn’t want to get into these concepts either.  But based on my dad’s current state, and what just happened, they are really top of mind.

For psych majors out there, a word of warning: I am going to butcher this.  Here goes anyway.

When we are born, we are all “id”.  It’s all desire.  Hunger, thirst, sleep, salt, touch.  Later in life, this also includes sex.  These are instinctive needs that underlie our will to live to ability to reproduce.  In Judaism, this is “yetzer hara”, the evil impulse.  It’s not evil per se; it’s what drives us to survive and without it, we would die.  They are inseparable from us, part of the whole us.

But if human beings we all only followed these impulses, we would collapse into anarchy.  So we have society, and society has rules.  Different societies have different rules but many are similar.  Thou shalt not kill, for example, is on one extreme.  Don’t wear white after Labor Day, I would argue, is on the other.  Now that I live in Wellesley, I get that not everyone would find these to be such polar opposites.  These ideas are implanted in the “superego”, which is aware of society’s customs and norms.

Between what society says and what desire demands – desire never asks, it only demands – is the “ego”.  The ego is the regulating force that understands when it’s time for sex and how to ask for it.  It is the director of the play that decides which actors to bring on stage.  Sometimes thirst is front and center and all else must cease while it has its moment in the spotlight.  It is the ego that calls it onto the stage, lets it speak its lines, and then moves it off to the side.  It is “yetzer hatov”, the good impulse, the part that understands that long-term love and commitment and good deeds also benefit the person demonstrating them.

It is said that as we age, we regress to what we were like when we were born.  Independence starts at zero, then increases, then decreases again.  So it is with my father right now.  He is turning into all id, all an unquenchable and bottomless desire to get every need met at the instant he feels it.  This is why he calls 20 times a day.  It is why he refuses his medication; he is convinced that the people dispensing it to him are trying to kill him and his survival instinct is kicking in.  Nowadays why when I don’t give him what he thinks he wants, exactly when he thinks he wants it, he will do or say anything to get it.

Hence the real purpose for this blog post.  It is not about psychology.  It is about the terrible things he says to me, how much I wish they didn’t hurt, and what I plan to do about it.

My father ordered an electric wheelchair on Amazon.  Everyone told him not to: doctors, nurses, my brother and me, the director of the community where he lives, everyone.  It was unanimous.  He won’t be allowed to ride it around the halls anyway.  He’s not safe to operate an electrical means of conveyance because he tends to fall asleep and doesn’t have the judgment to know whether he’s going too fast.  But for him, ability to move around has reached “id” levels.  So when it arrived, I asked the staff at Brookdale to send it back.

So he launched into a series of diatribes, including a long one about how I have been doing nothing but trying to steal from him.  I had made a bank transfer into one of his accounts from another so that I could pay his bills, which it turns out was incontrovertible proof that I was siphoning off his money.  I have made this same kind of transfer a thousand times.  Didn’t matter.

Then he insisted that he has an attorney visiting tomorrow to take away my brother’s and my proxy powers.  I don’t particularly enjoy making decisions like whether or not he should get an intubation tube if he has trouble breathing.  Who would?  But I am doing the best I can, and so is my brother.

This after a lovely morning where I organized for him with his hospice group to have a hot shower.  I don’t know how much time he has left, and before it is too late, I wanted him to have the sensation of warm water rolling down his body.  They needed me at one point so I helped lift him slowly while the nurses cleaned him off.  I held him under his right arm and supported him and watched the beads of water run down his back.

And this after I had convinced myself that I could work from his apartment during the week and had rearranged his desk so that I could be there as often as possible.  This way, when he woke up from his frequent naps, he would see me and know that he wasn’t alone.

Later I connected with the Executive Director, who is a prince of a man and has been so kind and supportive throughout the past difficult weeks.  I wanted to let him know that I was concerned, and also that this same lawyer somehow had spoken with my father about suing their assisted living community.  Apparently this scam is common and some unscrupulous attorneys reach out and find the vulnerable elderly to extract whatever legal fees they can before the end comes.

He could see how upset I was from how I was shaking.  He has seen this movie and starred in it himself as the son of someone deteriorating into an angry id and not much more.  He told me that it wasn’t really my father talking.  I don’t know.  I want to believe that.  I want to believe that this is just id, not ego, not the man who most likely brought me into the world.  I never thought I would write that sentence but I suppose it’s possible that he’s not really my father.

But it is also true that this version of the man isn’t really my father anyway.  That man disappeared sometime in May or June and I never saw it happen.  I fought hard to keep the universe from taking him from me, and while I wasn’t looking, it went ahead and reclaimed him anyway.

My time pondering this is almost done now; I convinced a relative to come visit him and she is on her way as I type.  I realize in a moment of calm that It’s only his id and not the rest of him.  I shouldn’t care about winning arguments with his id.  Ids will fight to the death because they know nothing else.  So really, the time for arguments is over.  The time for winning is over.  Now it is about honoring the man who was by dealing firmly but kindly with the man who still is.

 

The Time Shift

(deleted this by mistake – sorry for the repeat)…

Back in the days of visits to my father’s old apartment, we would have a pre-agreed upon time when I’d be arriving.  Then circumstances would come up.  I’d get Sandwiched Man type of responsibilities, or Route 9 would back up, or once in a while, I’d be attending something fun early on a Sunday afternoon and lose track of time.  A few times I even got lost in a book.  So instead of walking through my dad’s door at 2pm, it might be 2:30.  Normally I am a pretty punctual person but Sundays would be particularly challenging for some reason.  It happens.

Eventually he got used to this, even generous about it.  It’s not like he had other pressing engagements and at one point, a thousand years ago now, he was just happy to see me and spend some time together.  Because he didn’t have obligations anymore, he would refer to himself as the “time millionaire”, a reference to my once having had millions in stock options back in Silicon Valley in 1999 and 2000.  That ended for me as it did for most people back then, so for years, I was his “ex-millionaire” son.  I didn’t think it was as funny as he did.  Such was the nature of many of his jokes.

Before that transition though, in his early years of being here, he would really lay into me for being even ten minutes late.  He would tell me I was unreliable, for starters.  I couldn’t be counted on.  I won’t continue with the adjectives and invectives thrown my way.  Suffice it to say that they got to a point where even I, who until recently didn’t realize the need for shields with respect to him, had to tell him that he couldn’t talk to me that way.  Maybe that is a superpower I should have developed more quickly.

The irony is that now he has no sense of time whatsoever.  He calls so often during the workday that I’ve had to block his number from hitting my cellphone directly; I always get the message quickly, but after multiple days with over 20 phone calls per day, sometimes 5 calls in under 10 minutes, I had to put those shields up too.  Because he is sleeping so much, day and night have lost meaning for him.  He called this morning at 4:30am, a frequent occurrence.

Time has changed for me too.  People frequently use the expression “taking it one day at a time”.  I know what this means now.   I have to pace myself differently, slow things down, remember to conserve energy.

If you’ve been a caregiver, you know that conserving energy actually burns a lot of energy.  Usually by the evenings, I am pretty tired from trying hard not to get tired.

Also, I am remembering the days I spent sitting with him at his desk instead of crouched over his bed.  In those days, the biggest problem we’d have is that the YouTube classical music playlists that he created on his iPad hadn’t transferred correctly to his AppleTV.   He would insist that I stock his refrigerator with beer so that I could have one while I sat with him for an hour or more and tell each other stories.  Now he gets winded after less than 10 minutes.

I know that was only 2 months ago.  But it feels like 4 years.  I don’t know yet how to characterize the 4 years that we’ve been together.  Ask me 4 years from now, I guess.

The last time shift is that our time together is finite now.  I always knew it was true and never thought about this much before.  It didn’t seem to matter.  Now it pops into my head constantly, and I find myself trying to suppress it on most occasions.  Too much to do and for all I know, it could be months.  My father has cheated death so many times before that it’s hard to imagine that he won’t hold him off longer now than the doctors reasonably think he could.  But sometimes I let myself drift a bit, and into thinking about what time must be like for him now, and into how to make to the most of it.

The Corner Stool

Recently after some of the tougher visits with my father, I’ve made a detour to my favorite go-to, which is Jack’s Abby in Framingham.  It’s a beer hall with relentlessly knowledgeable serving staff, a huge and newly outfitted brewery, better-than-passable bar food, and most importantly, a long bar with plenty of stools.   Yesterday my family was away in Maine, so rather than come back to an empty house, I detoured there instead.

Jack’s Abby mostly makes lagers; I discovered them about 3 years ago and they’ve been my go-to beer pretty much ever since.  They moved to a downtown Framingham location about 2 years ago from a more remote outpost, and although I’d been there a few times since they opened, I didn’t realize how close they were to my dad’s place.  I actually re-discovered them during my dad’s most recent hospital stay at Metrowest hospital not far away.  I didn’t realize how not far away it was until I looked up how to get there on Google Maps, only to discover that the brew hall was 0.2 miles away.  Less than 1,000 feet actually.  How did I not realize that before?

Pathetic.

Anyway, I arrived and the place was mobbed.  There were no seats at the bar.  Then I looked again and noticed a lone barstool jammed in a corner between 2 couples.  Ordinarily I am not that guy.  Nowadays I am feeling less constrained by those kinds of social norms – so I went for it.  I jammed into the corner and asked them all to move so that I could have the spot.  One couple thought it was pretty funny.  The other displayed a reaction that can be described best as more typical in Massachusetts than in states where people have a sense of humor.  Just to tweak them further, I took a selfie.

I sat for about a half hour and had 2 half pints, one of the spicier version of their dark lager, and one of the fruitier version of their hoppy lager.  They were good – the beers there usually are, even the ones that are experiments.  But really what I had was time alone without actually having to be alone.  Anonymity in crowds is one of my go-to comforts.  I paid $20 for those 2 drinks and a salad; what that $20 really bought me was a transition from being by my father’s bedside to pivoting back to my regular environment.

I am interested in brewing so I talked to the eager bartenders, who never seem to be the same people twice, about what’s coming next and why certain things get brewed at certain times of year and what day parts are busy and whether those 2 people across the bar are on as awkward of a first date as it seemed and if the Sirius station is going to play any song by Tears for Fears, why “Head Over Heels?”.  Really I just wanted to talk about anything besides hospice or the paperwork I had recently signed that no child ever wants to sign, but someday might be forced to.

Jack’s Abby has been very good to me in recent weeks – yes, the beer is good, but the corner barstool is especially good.  I have my beer and a bite, let the din wash over my fears and return me to regular life, and then am on my way.

 

 

The Good Boy

I know it has been a while since I wrote — more on that later.  For now, I wanted to relay a conversation I had with my father today.

Quick note to get everyone up to speed on plot: about 6 weeks ago, my dad started acting in a way that I most charitably could describe as erratic.  He started forgetting to take medication, which for him is very unusual.  Or it was anyway.  He started being borderline abusive to the team helping to take care of him.  And he started arguing medical results with his doctor.  In early June, I was in Atlanta on a work trip and I’d heard that he had refused hospitalization after his physician had found his kidney numbers plummeting.  At the time I understood his viewpoint because once in the hospital system in America, all bets are off, and really, what could do they do anyway?  More tests?

Since then, here is the sequence: another doctor appointment, a week-long hospitalization over July 4th for severe edema and CHF, my father refusing enough tests that they booted him from the hospital, a terminal diagnosis with a one-month time frame, a last-minute scramble to move his apartment to assisted living, hospice sign-up, a visit from my brother, firing the original VNA and replacing them with another that actually returns my phone calls, and most of all, a highly diminished quality of life.  Really, the bottom fell out.

On that last point: my dad until 6 weeks ago could shuffle around his place and get himself to his favorite spots.  The desk where his iPad lived.  His reclining motorized chair.  The stove which he never lit but on which he ate everything.  His refrigerator which housed his Diet Coke.  The living room table where occasionally he would take a meal.  His scooter which he would use once a week to get his mail and terrorize the other residents.  The bed that he and my mother probably bought in Cleveland in the early 1960’s where he slept every night.

The picture I’ve shown is his old living room — now empty.

That world is over now.  Even that bed has about 2 more days to go before it’s replaced with a hospital bed because he can’t get out of the one he has and it’s too hard for the staff to reach down to where he normally is.  He can barely move.  He can see the Diet Coke on the nightstand, but can’t quite reach it.  It is Tantalus, come to life.

Today I sat with him on that bed, maybe for the last time.  I used to sit with him at his desk, but now usually he is half asleep in a wheelchair or in bed.  Recently he has been having nightmares where my mother visits him and tells him about everything he has done wrong.  How he was too cheap to visit his grandchildren in California, how his English should be better, how he should have been a better husband and father.  Then he looked up at me with moist eyes — and I mean up, because he was laying down and I was sitting – and he told me that he was trying to be a good boy.

In a way this broke my heart.  My dad was known for many things as a father but reassurance was not among them.  I can see him turning the voice that he employed on my brother and me on himself and unlike the two of us, he doesn’t have well-developed defenses.  Boys who grew up 80 years ago did not develop those kinds of defenses against their fathers the way that those of us reared in the Reagan era did.  It also broke my heart a bit because there is some part of him that knows that although he has cheated death so many times — so many times — the end is coming soon.

But then, I know that already.  Soon might be a week, or a month, or 3 months.  That part I am almost ready for.

So over the past few weeks, it has made me think about the last 4 years and all the things I did right, and all the things I did wrong.  I made a lot of mistakes.  And yet — I know I did the best I could.  There is really nothing more I could have done while still being the Sandwiched Man and keeping the rest of the plates spinning.  I had a lot of plates going, still do.

I think that is true for many of us.  My father wasn’t raised to be the kind of father that I try to be.  Being a husband and father and son and friend and volunteer and breadwinner and also being oneself is hard.  Being Sandwiched is hard.  It might be the hardest thing.

Hospice can help him with the physical symptoms that are about to come his way.  Kidney failure is kind – it’s a sleepy end.  Already it has begun to lay its fingers on him; the insomnia that he complained about 6 weeks ago was actually narcolepsy caused during the day that rising creatinine levels.  It’s sleep, and it’s natural, and nightmares aside, it is peaceful.  Congestive heart failure is less kind.   I can’t solve that.

What I tried to do and hope I can do is help ease his guilt, and keep telling him what I did today.  Which was not about being a “good boy”.  I don’t even know what that means, and I know for myself now that striving for it implies that there is an alternative to avoid.  It’s simple: you did the best you could.  The best you could.  That’s enough.

It’s also the best I can do.  I’m OK with this for myself now regardless of what comes next, so hope I can get this to be OK for him too.

 

 

The Beer

Some time ago, I mentioned that in the catalog of stuff in my dad’s apartment, I almost always keep beer in the refrigerator.  Specifically, Smoke and Dagger black lager from Jack’s Abby brewery in Framingham.  Sweet, smoky, not too heavy, drinkable if you need more than one – which as a caregiver, sometimes you go.  This was back last August before my dad broke his hip, therefore keeping me away from his apartment for a few months.

20160207_142631

So when he moved back home in December and I resumed regular visits in January, I resumed the habit until I ran out.  I didn’t buy more – truth is, I felt guilty that my visits would seem like something that necessitated taking the edge off.  I once had an aunt who was challenging to deal with, and I occasionally would buy her Absolut vodka with which she would then make cocktails for me during my dinner visits.  I don’t even really like vodka but with her, it helped a lot.  We all have relatives like this.

A few weeks ago, my father noticed that I wasn’t having a beer at his place anymore.  “Why,” he asked me.  I told him that I didn’t really want to keep beer there and that it was fine.  Yet another example of my not exactly being true to what I wanted or needed — more on this from my post about my visit to New York with my daughter Sophie.

So, unexpectedly, he stops and tells me that he wants me to enjoy coming to visit him, and that he likes that I relax and have a beer while talking with him.  You should keep beer here, he said.  I insist.  I want you to look forward to coming to see me.

He doesn’t really drink at all, so this surprised me.  And it surprised me for another reason.  Sometimes as a caregiver you look for any scrap of any appreciation of not only what you are doing, but even just that you are there.  Once upon a time, just their being there was all you hoped for, and it is strange and wonderful when it happens to you.

My beer of choice now is the Joshua Norton Imperial Stout – Untapped review here.  I sit on the couch and sip one while we watch a movie together.  Lately we have watched Ninotchka.  Twice – I think he forgot that we had seen it already.

One of my favorite things, maybe my favorite thing, is to hang out with a friend and have a beer and just be.  He and I never had this before I became a sandwich generation man.  Don’t care.  We do it now, and beer never tasted so good.

 

The Cast

Unfortunately, I am enough of a veteran of my father’s hospital visits for life-threatening conditions to be in a position to be helpful.  Believe me, I am aware that ignorance is most frequently bliss.  However, since I am armed with this knowledge, and you might find yourself someday in this situation, I want to write about it.
As I mentioned last time, time in the hospital loses meaning.  It’s hours of waiting followed by short frantic interactions with people who speak an incomprehensible language and don’t care if you understand them.  They are totally sure in their point of view despite information that is incomplete and sketchy.  Many of them are still learning.  They ask the same questions over and over.  Plus, it is a Kafka-esque environment where the professionals in charge of your parent’s care frequently concoct ways to keep them in the hospital longer despite the well-documented fact that being in the hospital is actually dangerous, both short and medium term.
But who are these people?  A short guide:
The surgeon: if you have seen any movie involving a cocky fighter pilot (Top Gun, Independence Day), or have seen the character Turk in the show Scrubs, you know the type already.  They do one thing very well and have trained it a million times, so you should have confidence that they can execute the operation your loved one needs.  Unfortunately,  it also appears that they have given up on doing anything else well, especially communicating.  What makes them particularly skilled in the O.R. – laser focus on the task at hand – makes them particularly clumsy outside it.  For example: the doctor who was going to place my father’s pacemaker called me the day before the procedure and clinically ran down all of the ways my father could die either during or as a result of the procedure.  Ironically, his name is Dr. Love.  Seriously.  The surgeon who did his hip replacement breezed out after his surgery (delayed 6 hours – it’s hospital time after all)
The cardiologist: as noted last time: my father’s main cardiologist was right out of central casting.  His name was Dr. Rosen and he was a six-hundred year old man who stood about 3 feet tall and had  a loud gravelly voice and won my father’s confidence instantly.  Too bad because he is the one who turned a 72 hour hospital visit into a 2 week odyssey.  From the instant he noticed my father’s irregular heartbeat, he turned into the single person who controlled his fate and with it, my family’s.  He spoke in complex medical jargon into my father’s bad ear, so they can’t hear it anyway.  Hence, the need to be so loud.  They are risk averse and are the gatekeepers to actually being able to get any other procedure done.  They have no incentive for your loved one ever to leave their watch — that could be dangerous!  Also, they see heart problems everywhere in your life.  Did you fall asleep once watching Fox News?  It’s probably because your heart slowed down so we better run some more time-consuming and expensive tests.  Also, you obviously are high risk so you need to stay in the ICU and not on the regular floor where you can at least look out the window and see whether it’s day or night.  By the way, they round at irregular times, so if you want to wait and have a conversation with them, you’ve lost your whole morning.
The general practitioner: this is the main doctor who is the focal point on the floor through whom everyone is supposed to communicate.  In other words, he is useless.  He is at the mercy of the cardiologist on the one hand and the surgeon on the other.  He has no control over schedules.  He only knows what the nurses who have seen you have told him or what’s in your record.  He doesn’t prescribe medication — only the much more expensive specialists can do that – and doesn’t get to know your parent.  Also, he is the one who demands the incessant 2am testing that is keeping your loved one awake and in need of more medication when what they actually need is old-fashioned sleep.
The anesthesiologist: almost as much as the surgeon, this is the person who really determines whether your loved one lives or dies in surgery.  They work somewhat in the shadow of the fighter pilots who actually do the cutting and are the heroes of the stories than end well, which you have to remind yourself is most of them.
 
The social worker: at some point, with any luck, your loved will be discharged from the hospital.  When this happens, the hospital is intent on achieving their main goal, which is not the care of the person you love but minimizing their future liability.  The social worker who manages the discharge will be looking for a suitable destination — that is, in a heartfelt gesture in a hastily arranged meeting you have only because you happen to be there when she flits across the hospital floor, she will give you a printed out list of rehabilitation centers and ask you to circle things on it.  Then she will take that list and not return your phone calls.  Just before the discharge the case manager will come down from on high and inform you which of your choices actually worked out.  Which brings us to…
The case manager: the case manager is the one who in the hospital monitors the progress of your loved one.  In other words, can we charge for everything we’re doing and turn a profit while minimizing our risk?  Other than that, I can’t figure what this person actually did.  I only spoke to her once in the almost 2 weeks my father spent in the hospital, while he was in the ICU and I was increasingly convinced he would never get out.  She seemed to be totally at the mercy of what the specialists were saying.  In theory, she should be on your side in trying to minimize the time in the hospital, and therefore costs.  Someday in a fixed payment world it will work this way because there will be no rewards for extra time and procedures.  But not yet.
The nursing staff: in the grand scheme, they are the only ones who deliver care.  Not medication or procedures, which the doctors and specialists seem to have forgotten is not the same thing.  Care has many dimensions and encompasses the whole person: the part that means making patients comfortable, touching their hair, talking to them and not at them, looking them in the eye, noticing that they haven’t eaten or had enough ice water.  They take the time to figure out that your parent hears better out of one ear than the other and actually will speak to her in that ear.  They often know when what the patient really needs is a decent night’s sleep and not more tests.  They tend to the half of the equation that is the person’s will to live.  Whatever nurses are paid, they should earn more.
The clergy: every hospital has a non-denominational member of the clergy on staff.  They will approach you and gently probe how you’re doing emotionally and spiritually.  I haven’t felt comfort from this entreaty from a total stranger, although having seen the state of some of the families in the hospital, I get it.  It seems like a lonely and difficult job that must attract some of the most compassionate people on earth.
The ultrasound/X-ray technicians: as a Sandwich Generation father who has experienced infertility and the multiple ultrasounds that come along with IVF treatments, I have met more than my fair share — and yours — of ultrasound technicians.  Most of the actual techs I’ve come across are more akin to nurses in the way they deal with people and perform their functions.  Suddenly my father became a huge clot risk because of his irregular heartbeat and because he was horizontal for so long (Kafka alert: he was only horizontal that long because the hospital kept him in a bed for a week before surgery!).  The technician who came to check that his veins were clot-free had instructions to roll his leg to check them.  Which of course was impossible because he had a broken hip.  She knew that this was dumb so did the best she could, telling jokes and flirting with my father the whole time.  He loved her and did whatever she asked.  Also, she took the time to figure out which ear he could hear in, which made asking him to do things much easier.  I’m just saying.
The cafeteria staff: these might be the nicest people in the whole place.  If you find yourself in a hospital for an interminable period waiting for your loved one, go talk to someone who works there.  It sort of proves that the less someone earns in the hospital, the more compassionate they are.
Other patients: Leonard Morse Hospital seems to exist solely to administer to elderly patients in Metro-west Boston who have broken a bone.  If you ever wonder where your Medicare money goes, it flows to places like this all over the country.  And I found that these elderly patients seemed sicker, paler, older, and closer to death than my elderly father.  Like everyone else, I see my father as he once was.
Finally, you will meet other families in the hospital.  Many are going through the worst moments of their lives, whatever the outcome.  I met one husband whose wife had been in the ICU for almost a week with a very dangerous and hard-to-kill stomach ailment, and he had been sleeping on a chair ever since.  He was so tired that I couldn’t convince him that a good night’s sleep in his nearby bed would do him good.  In the surgical waiting room, I saw other anxious families checking the clock almost in rhythm with me.  Some are just arriving and running the gauntlet of admitting their loved one.  And others, like me, are handling discharge paperwork and escort their loved one onto their next destination.
But that part of the story comes later.

The Roadblock

Last time in my series about my dad, I wrote about the wonderful nurse who took care of my father the night he was admitted to Leonard Morse Hospital in Natick after he broke his hip.  Leonard Morse is tucked away on the short road from town to what residents euphemistically call “South Natick”, which is code for “Not Quite Wellesley”.   I live in Wellesley, which is Not Quite Princeton, which is Not Quite Oxford, and so on.  I don’t take this stuff very seriously – but people in South Natick do.

I had gone home for the night, expecting a long day tomorrow when they performed his surgery.  His break was partial, meaning that the bone was broken and the socket was intact.  A total break was the catalyst for my mother’s very rapid decline 6 years ago.  Much more on this later.  Suffice it to say that this injury is painful, debilitating, and takes a very strong will to overcome.  My mother had many gifts, but after many years of unhappiness (and smoking), a strong will wasn’t among them.  She lasted 3 weeks.

My father is different.  Death has come for him many times, and each time, he has refused the invitation.  I’m guessing that Death’s feeling pretty exasperated by now and wondering what he has to do to get this guy to go along with him already.  My dad’s version what happened to her includes a strong sense of paranoia about how doctors and hospitals kill people — which they do — but also that she gave up.  Already that night he told me that it was not going to happen to him and that after the surgery, he would work hard.

Partial hip replacements, even for the elderly, generally take a little over an hour and are not particularly dangerous procedures.  My brother just had a full replacement and wasn’t even under general anesthesia.  Leonard Morse, aside from anchoring the road to South Natick, is a hip replacement factory for the elderly who live in and around Metrowest Boston.  Without Medicare, it would not exist.  Because of Medicare, it is full to its 5th-floor brim with geriatric patients awaiting, undergoing, or recovering from surgery.

I thought my father would be in that 2nd category by the next afternoon and the 3rd category by evening, as we’d been told the night before by the attending the ER.  I was wrong.  Enter the cardiologist.

I got to know the cast of characters at the hospital a lot better than last time – that’s the next post in the series.  Suffice it to say that the cardiologist who performed tests on my father came straight from central casting.   His name was Dr. Rosen and he was a six-hundred year old man who stood about 3 feet tall and had  a loud gravelly voice and won my father’s confidence instantly.  Too bad because he is the one who turned a 72 hour hospital visit into a 2 week odyssey when he found that my father has an irregular heartbeat.  On the monitor, I could see it occasionally fluctuate from its usual 75 up to 150, then back to 75, then down to 40, then back to 75, and so on.

That meant no surgery that day, and no definite answer on when it would happen.

From the instant Dr. Rosen noticed my father’s arrhythmia, he turned into the single person who controlled his fate and with it, my family’s.  He spoke in complex medical jargon into my father’s bad ear, which I suspect is why he needed to be so loud.  Cardiologists are risk averse and are the gatekeepers to actually being able to get any other procedure done.  They have no incentive for your loved one ever to leave their watch — that could be dangerous!  Also, they see heart problems everywhere in your life.  Did you fall asleep once watching Fox News?  It’s probably because your heart slowed down so we better run some more time-consuming and expensive tests.  Also, you obviously are high risk so you need to stay in the ICU and not on the regular floor where you can at least look out the window and see whether it’s day or night.

Although fewer than one in four thousand Americans are in intensive care at any given time, they account for four per cent of national health-care costs.  By my math on 16% of GDP going to health care, that’s almost 0.5% of our entire Gross Domestic Product.  Put another way: that’s roughly the contribution to the economy from the state of New Mexico.

By the way, cardiologists round at irregular times, so if you want to wait and have a conversation with them, you’ve lost your whole morning.  If you are a sandwich generation man juggling your parent and kids, or you have a job, or you expect the same level of courtesy that you would get at your local Jiffy Lube, you are out of luck.

The whole time my father was on the monitor in this brightly-lit but windowless room, he was trying to ask my him detailed information about his medical condition: doctors, medications, and other critical information that my father has never known.  I know the answers, but somehow, he didn’t want to ask me; he preferred to make my father give him a mostly fictional or confused answer, maybe just so that he could observe that.  To a cardiologist, or any doctor in the hospital, not knowing your medications cold is a sign of confusion and dementia.  How could you not know?  Medication is so important!

It is a unique Kafka-esque feature of hospitals that being in them contributes to the conditions that they then treat.

Also remember that my father hadn’t eaten the day before (Yom Kippur), or the night before (because he might have surgery the next day).  So in addition to being weak because he had a broken hip and a lot of pain, he was in a disorienting place, hadn’t really slept because of the interminable blood pressure and other testing that woke him every hour, and was anxious about what was to come.  It was all I could do to suggest humbly to Dr.  Rosen that perhaps these factors might be contributing to his apparent confusion.

Time in the hospital loses meaning.  It’s hours of waiting followed by 5-minute interactions with people who mostly have poor people skills, speak an incomprehensible language, and complete certainty in their point of view despite woefully incomplete information.  Even the omniscient cardiologist.

So, now we had an indefinite wait ahead of us until my father would be stable enough for surgery.  Was the arrhythmia new?  Did it cause his fall?  Would medication stabilize it?  How long would that take?  I didn’t know – but I had a sense of dread at the roadblocks that I knew now were coming.

The Gesture

I’m writing this from a place I’ve written before, a train working its way up the Northeast corridor.  It’s a good spot to reflect.  Right now, Sophie and I are somewhere in Connecticut.  She is to my right, laboring away at studying for a science test, which in her world appears to consist of color-coded writing in a spiral notebook while eating M&M’s and listening to Ed Sheeran’s “Shape of You”.  Based on what comes out 107.9FM in Boston these days, it could be a lot worse.

I wrote a couple of years ago about a weekend I had alone during a dance competition.  Sophie doesn’t dance anymore though.  Lily does, and she and Nova are grinding out a competition this weekend in Concord, New Hampshire.  Months ago, Sophie and I sat at dinner at Border Cafe in Harvard Square and thought about this particular weekend, and what we should do with it.  Even that dinner was fantastic; there is nothing like anticipating a weekend away with your daughter who you suspect in the future won’t be interested in such a weekend, let alone planning it.

It was a chilly fall evening and we were sitting outside.  I think we both wanted to brave the elements because we could, and because we both knew the season was fleeting.  It is New England after all.  We were talking about flying somewhere that was a great food town, and given the evening, mostly picked spots that were warmer.  Maybe New Orleans.  We also tossed around Austin and Atlanta.

Weeks later, indoors, we landed on New York, which is how we ended up on this train today.  For the past couple months since I bought the train tickets, I’ve thought ahead to spending a weekend in the city with my teenage daughter, the one who once fit between my elbow and my fingertips, who once looked at me with the earnest open eyes of a 10-month old and said “Gee” with a hard G.  But as a sandwich generation man, I overlooked the many reasons that it would such an amazing couple of days together.

For one, I almost ceased to be sandwich generation this weekend.  With some guilt, I admit that I didn’t check in with my father.  That didn’t work so well on Yom Kippur but it was a luxury not to juggle that responsibility.  I also didn’t check work, barely checked in with Nova and Lily, and didn’t touch base with my relatives who live in the city.  It was just us.

It was wonderful.  I got to focus in on this wonderful human being who is usually half of “Sophie and Lily”, or 1/3 of the women I live with every day.  I could tell a dozen stories, but instead I have one that describes the weekend.

We are on top of the World Trade Center having finished the tour and looked at the city through all 360 degrees of the panoramic viewing area at the top.  We are considering getting something to eat or drink so that we linger a little longer, and I notice a very classy and elegant bar area looking north toward the Empire State Building, Central Park, and beyond.  Of course it faces that direction – it’s pretty spectacular, even on kind of a hazy day.

Sophie asks me if I want to stop there, and of course I do, how could I not – but instead I say, “No, it’s OK, we can get going.”  She stops me and replies, “Come on Daddy, we should go in.”

It is a thoughtful and perceptive gesture, and takes me completely by surprise.   I hesitate for just an instant, then agree, and so instead of leaving and thinking about what might have been, I walk with her over to the hostess stand.

The hostess leads us to the bar and we take our seats.  We share a moment at the bar looking out the window, her with a raspberry mint concoction and me with a Sean Minor Cabernet.  We sit and talk, not rushed.  It is perfect.  When Sophie was young, she would frequently be overstimulated and as a result, she learned to recognize impulses and emotions in herself.  Now that ability to look inward manifests itself in awareness, and confidence, and sometimes, empathy t0ward others.  I feel sometimes like I never ask to get to ask for what I really want, because I am sandwich generation and because I am my mother’s child.  She somehow knows that about me, and doesn’t want me to miss out on something that she knows will be important to me.

Like I said about the gesture: perfect.

In case you are wondering: we achieved our goals of overeating this weekend.  It was New York after all.  We had dinner at Chelsea Market at Los Tacos Number One, dropping a mere $20 for amazing and fresh tacos for the 2 of us, and my favorite, re-imported Mexican Coke made with cane sugar and served in a glass bottle.  Once upon a time that was a rare, hard-to-find treat and I’m therefore conditioned to say yes every time the chance presents itself.  Our ‘dinner’ Friday night was frozen hot chocolate and berries and cream at Serendipity.  Lunch at Eataly.  Breakfast at Zucker’s bagels.  Dim-sum in Flushing with our friends.  We saw a musical and wandered Times Square in a chilly drizzle.

We also rode the subway incessantly, which she loved.  She had the appreciation of an adult and the giddiness of a small child.  Apparently there is something for a teenager about being trapped in car-centric suburbia, and suddenly being able to hop onto a train accessible within blocks of anywhere you’d like to go.  Or at least my friend said during dim-sum.  He is right, I’m sure.

I saved my Metrocard, and every museum brochure, and every receipt.

And yet — the gesture at the top of the World Trade Center is the one that I’ll remember.  Freed of sandwich generation constraints, I had the space to recognize it.  Thinking about it now, I can’t help but feel so much pride in having a small hand in bringing someone like that into the world, and shaping her a little.  I don’t get to shape my father much.

Sitting there at the bar, she looked at me and asked me if we could do a trip like this again next year.  There is only one thing you say when you get a question like that during a special weekend: yes.

 

 

 

The Nurse

As I mentioned in my first post in this series, my father had fallen and broken his hip.  Much more on that later.  First I want to talk about something I learned when he checked into Leonard Morse Hospital, which is this: many nurses don’t work for the hospitals where you see them.

Her name escapes me now, which I feel a little badly about – but then I suppose if you are a hospital administrator, that’s part of the point.  You want them to be as interchangeable as possible.  So, let’s call her Carmen.  She looked like a Carmen, with dark hair, dark eyes, and olive skin.  Although she was attending to my father in a hospital in Natick, Massachusetts, she was actually a 30-something temp who lived in South Florida and was part of a staffing agency.  I was too jacked on adrenaline to ask her which agency, and truth be told, I was still absorbing the fact that a Massachusetts ER nurse would have been transported up for a 4 day shift from Florida.

She wasn’t unhappy about it.  In fact, she had requested it because her boyfriend lives in Milton, only a 45 minute drive away.  She gets up here every chance she gets.  But from hearing her describe it, it is a challenging life.  She is paid by the hour; if she’s not staffed somewhere, she’s not earning money.  Often she is dropped into ER’s where she doesn’t know anyone and she’s gone before she has the chance to really try.  And when she works, she is working.  She is not checking social media, or shopping online, or catching up on work-related reading, or texting with her boyfriend.  Even in an ER that isn’t that busy, Carmen isn’t walking around.  She is running.

I was somewhat flabbergasted by the sheer amount of chasing people down that she had to do.  Even in a mostly empty hospital on a Wednesday night, scheduling resources like an X-ray was extraordinarily complicated.  Then getting my father up there was hard.  Then we had to wait for the result, and of course, she is the only one who has any idea when the orthopedic gods from on high have deigned to gaze at the picture.  I imagine her nightly labor is a little like my recurring dream like I am running in molasses, or am trying to move my arms but something I can’t see is pinning them.  Carmen must feel like that all the time.

And yet – she was so wonderful with my father.   He is 92 and therefore is simultaneously a bit cantankerous while also liking to flirt with and charm younger women.  Which for him, is everyone.  She did not treat him, as the system would so often over the next couple of months, as an “elderly-male-who-fell-and-probably-has-dementia-and-so-many-other-problems.  Every doctor, and I mean every single one who saw him that night, did.  Not her.  She figured out that because he has a hearing aid, she should talk into that ear.  She made sure he was comfortable.  She held his hand while she talked to him.  She delivered news the instant she could, and was selfless and apologetic when she couldn’t.  Mostly, she delivered care.  Not medication or testing.  Care.

I’m guessing of the 3.1 million registered nurses in the U.S. – 3.1 million! – that hundreds of thousands of them are temps like Carmen, waiting to find out where they are going next.   Then when they get there, they are the front line to sick, broken and scared people who are caught in the hospital system and looking for answers and care, genuine care, anywhere they can find it.  The same was true for my daughtefsdfgsdfgrs when they were in the hospital with rotovirus just before they turned two; hospital supervision is a sandwich generation problem, for sure.

I wish I could remember Carmen’s name, or that we had a system where Carmens are not commodities.  Imagine the care they could deliver if they weren’t running in molasses.  But, obstacles or not, I’m glad she was there that night for my father, and for me.