Archive | January 2014

Half Full (Part 1)

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Although I am in the midst of the intense experience called “caring for one’s parent”, I am also aware that in many ways, I am lucky to be in this situation at all.  C-Diff is not a disease that everyone survives, and certainly not everyone who is 89 years old and has 5 recurrences.  But then my father has been giving death the slip for a long time now.

And, whether by good fortune, planning, or both, I also can look at the situation of taking care of my father and feel like the glass is not just half full.  It might be closer to 2/3.  Here’s why I say this (and have been encouraged to say it):

  • My father’s mind isn’t just sharp.  It’s activated.  He reads newspapers online in multiple languages (Hungarian, German, English).  He leads a bi-weekly classical music seminar in his community where he streams YouTube videos over AppleTV to an ever-growing crowd.  He Skypes with my brother regularly.  He remembers nearly everything from his photo albums from 60 years ago.  This is big.  And he nearly always wants to learn.
  • My brother and I are a great partnership.  Yes, I am local and he is out in California, and yet I could not ask for a better partner.  Our relationship works now at a level that I could not have conceived of only a few years ago.  We work at this and communicate frequently, so this is not entirely luck.  Many siblings actually disagree about what to do and how to do it, which leads to paralysis, which then leads to bad situations persisting.  I learned a lot about partnerships in one of my businesses and have applied some of those lessons to being in this one.  But having a brother?  I can’t take credit for that.
  • Ditto for the support I get from my family.  It is easy to mess this up.  I have to balance things carefully (hence the title of this blog) to keep it that way, of course.
  • Jewish Family and Children’s Services have great support and programming for this exact situation.  We got connected with their Elder Experts service, a pricey (more on this later) but invaluable service that helped me find him a place to live, a local doctor, and connected me with Schecter Holocaust Services, which pays for some of his additional home care because he is a Holocaust survivor.  WIthout them, I probably would have moved him into an apartment, which likely would have been an unmitigated disaster.
  • We have sufficient financial means to pay for housing in a nice community near me, which is not easy since I live in Wellesley, MA, also known by its slightly derogatory nickname “Swellesley”.  He actually lives in Framingham, which is a lot cheaper than being here and still feels really swank for someone who grew up in Depression-era semi-rural Hungary.  He is in independent living, which is a lot cheaper than assisted living, which itself is cheaper than skilled nursing.  JF&CS pays for his weekly HomeInstead visits, which when they finally began liberated me from being his housekeeper.  And we have insurance which paid for his post-hospitalization stint in the rehab center (Medicare would have mostly dropped him after 20 days), so that didn’t wipe him out.  Some of these stemmed from good choices he or we made a long time ago, which I guess has some degree of foresight to it.  And a lot of it was luck.  My mother was a bit of a day-trader in her day, so not all of their financial decisions were good ones.  The decision to take out Medicare supplemental insurance definitely was.
  • We were selling his house in 2013, not 2010.  Total dumb luck.  People forget sometimes how the difference between financial success and failure is timing.  Never has this been more true than in the housing market in the past 5 years.  We hired a really good broker who specializes in this kind of transaction (vacant house from a senior owner who lived there for many years and then moved on), and she did a terrific job.  For our part, my brother and I were hyper-responsive to anything she asked us to do and let her drive the bus, so to speak.  Could she have sold the place so quickly and for such a good price in 2010?  Doubtful.

I could go on, but you get the idea.  Here is one last story to illustrate it.

When he was in the rehab center and I was shuttling back and forth to NJ from MA, my visits ranged from a few days to a few hours.  During my shortest visit, my father was in the physical therapy room and I was about to leave.  He had been there for over 2 weeks and physical recovery was coming slowly; he still had C-Diff, the power of which neither of us fully understood, so we didn’t know why he was so drained and tired all the time.  As I started to leave, he started to cry, which is very unusual for him.  He was convinced he was going to die in rehab as my mother had 2 years earlier.

I told him that we were destined to have 1 more bowl of clam chowder together at Legal Seafoods and that all he had to do was hang on long enough to make that happen, and the rest would take of itself.  When I said it to him, I believed it.  I don’t know why; I just did.  I told him it was written in the stars.

Several weeks later, after he left the rehab center, had survived 2 weeks on his own mostly alone in the house, moved to MA and gotten over the latest bout of C-Diff, we finally had that meal at Legal’s.  We were very fortunate to be there.  I am fortunate to be in this situation.  I know.

You Need More Help

Before I became a sandwich generation adult in earnest, my parents lived in New Jersey in the 1960’s era, faux-wood-walled split level in which I grew up.  My mother handled everything, with my father mostly withdrawn and keeping to himself.  It all changed one Saturday morning when she tripped over a carpet, fell and broke her hip.  We didn’t know then that she’d be gone within 3 weeks, a victim of her own cascading health problems (and probably the medical profession, which threw a lot of medication and procedures at her without much regard for how taxing the cure was.)

What we did know is that my father was suddenly in the house by himself and we weren’t convinced he knew how to operate anything in the kitchen.  Or pay the bills.  Or clean up after himself.  Or do laundry.

I lived in Massachusetts at the time and my brother Rob in California, but we both made trips back home to visit my mother in the hospital and my father at home.  It was my first time dealing with sandwich generation issues, so called, and I admit: it overwhelmed me.  I had also launched a business that had just started to go sideways (a polite professional euphemism for “poorly), which is a bad feeling in the best of times.  This combination led to a series of sleepless, gnawed fingernails and emotional confrontations with anyone and everyone.

In a bizarre moment of clarity – in retrospect it’s easy to see the wheels coming off the car, but at the time, much more difficult – I made an appointment to speak with my Rabbi.  What I thought I was going to talk to him about was honoring my father and mother while keeping the bonds with my wife and family.  I sat on his couch, unburdening myself and waiting for scholarly wisdom to unlock once and for the all the secret of being in the middle of the proverbial slices of bread.

Instead, he looked at me, and said simply, “You’re going to need a lot more help.”

His advice, which I think of often almost 3 years later, was that if I couldn’t take care of myself, there was no way I could take care of anyone else.  You can’t be the first phone call for everything, he told me.  I remember that metaphor most of all.  Figure out how to get the basics taken care of so that you are doing for your parents and for your family what no one else can do.

I mention this particular piece of wisdom – which actually originates from Maimonides in the 12th century — because, while I forget it often, I always try to come back to it.  It is difficult because my father relies on my brother and me now for so many of the basics.  He is in a senior community here in MA that ranges from independent living (where he is now) all the way up to a skilled nursing facility.  But my father has never been independent.  He’s never done laundry, changed sheets, cleaned dishes, emptied his own trash, ordered his own supplies (kitchen, bathroom, office, or otherwise), set up his own cellphone, or dealt with health insurance.  He’s also never admitted weakness.  I suppose few of us have.

In other words, he is someone who is used to being waited on.  And at the same time, until not long after my mother died, he had a Depression-era sensibility to paying for help, meaning that he got it either free or not at all.  In his mind, it was my mother’s job, and then it became my job or my brother’s job, to do these things for him.

I would like to report that we had one huge confrontation over this and then he saw the wisdom of my position.  That would be fiction though.  What it looks more like is erosion, where he continuously asks me to perform tasks that I’ve told him that I’m not going to do and that he could do himself, and over time, he figures out that I’m just not going to do it.  (Another hallmark of the sandwich generation: always having to calculate, consciously or otherwise, what we will and won’t do for any given person in our lives.  It is exhausting).  I focus instead on how to eliminate the task, or how to get additional help.

If you have an elderly parent living alone in a situation where you know that they can’t perform everything themselves, and you have the option, get more help.  Tell your parent that it’s not for them, it’s for you.  This line of argument is hard to argue with, and also has the virtue of being true.  Call HomeInstead or a home care agency.  Find other people to check in on them – and definitely get to know their neighbors if you don’t already.  Call their town’s local senior center; most towns have one since seniors are very profitable residents who pay property without consuming public schools.  Get their church or synagogue involved.  Can they Skype or use a webcam?  Talk to them that way when you can – that way you can see if they are hanging out in their pajamas all day, a sure sign of depression and withdrawing from the world.  Above all, do not feel guilty about not always being the first phone call.  It’s probably not sustainable, will wear you down, and then will make you unable to respond in force when you really need to.

But how do you get them to move closer to you or to a community where they have a lot more help?  More on that another time.

My initiation into The Sandwich Generation

I have read many blogs over the years and I have to admit, they make me feel like I am probably a little too late to have a compelling hook.  I live in suburbia, so can’t wax heroic about the challenges of cooking for 365 straight days in a tiny urban kitchen with one burner and an underpowered oven.  I have 10 year-old children and a mortgage, so I am not about to trek through the Orient, across the Sahara, all the while really journeying inside my own mind on a self-indulgent journey to its center.  I have completed only 2 short triathlons, so I lack the credibility required to speak of discipline, of commitment, of transcending my limitations.  I drink beer, so while I know about its self-medicating qualities, I can’t hold your attention my encyclopedic knowledge of different brewing styles.  Maybe someday.

What I can write about, with authority, is juggling.  Specifically, about being caught between two things that each pull me nearly irresistibly in opposite directions.  You know it as “sandwich generation”.   This typically refers to newly middle-aged adults who wake up one day looking after children and elderly parents, all the while fearing that the struggle to accomplish both is futile.   And, somewhere in the back of their minds, they remember that they are married and would like to stay that way.  And, they probably have to earn a living.  And, they have made commitments to their community – their neighborhood, their hockey team, or in my case, their synagogue.  All of this happens at the precise moment that their bodies start their slow physical declines, suddenly needing more running just to arrive at the same cardiovascular destination.

This is now my story.

My father contracted a dangerous stomach infection in June.  He had been living on his own in the same split-level where I grew up in Lawrenceville, New Jersey for the past 2 years.  He got sick on his 89th birthday and when we couldn’t reach him for more than 2 days, we knew that something had gone wrong.  A neighbor told us that he was at Princeton Medical Center, and I figured that it would a quick recovery from food poisoning or something equally innocuous.  Only when I traveled down there and spoke with the doctors – who, as anyone who has dealt with a sick relative long-distance can tell you, are impossible to reach over the phone – did I find out that his malady, the dreaded C Diff infection, has a 50% mortality rate at his age.

I carry with me the memory of standing by the hallway window and calling my brother to tell him to buy a plane ticket, right now, because we didn’t know what was going to happen.

My father is a man who survived the Nazis, then the Communists, and then colon cancer, and even eating his own cooking in recipes he learned after age 87, so we should not have been surprised that he beat the 50/50 odds and left the hospital 10 days later.  But before he cheated death, he wrestled with it, and as a son, nothing drives mortality home like watching a father do this.  I would run my fingers through his hair as he looked up at me from his hospital bed, and I could not help but see myself.

More on that experience later.

Over the course of the next 2 months, my brother and I made many trips to Princeton, first to the hospital, then to the rehab center, and finally to pack him up and move him to the Boston area to live near me.  And now he is here.

So, my story is about wishing for and getting one more meal at Legal Seafood with my father.  It is about best practices for making work conference calls from hospital waiting rooms.  It is about a rainy night on a cellphone with a dying battery at a compounding pharmacy debating a prior authorization for an expensive Tier V antibiotic with my dad’s Medicare Part D provider.  (Side note: it also is about waking up that morning not knowing what a compounding pharmacy, prior authorization, Tier V antibiotic or Medicare Part D provider were).  It is about sitting on the porch with my wife, who is crying because she fears that the life I’d had this past summer was going to swallow our marriage and our limited time with our children.  And, it is about the clarity of selflessly loving a (sometimes selfish) parent.

Until I start writing regularly, I can’t predict what else it will be about.  But I hope you recognize enough of your own story in mine to keep reading and maybe contribute as well.