Archive | April 2017

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.

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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.