Tag Archive | elder care

The Scooter (Part 1)

I moved to New England in 2003, trading the mild Bay Area climate for April snow.  Needless to say, I felt some bitterness about this as I’d fled the Northeast years before to avoid this kind of unnatural condition.  In response, I did what many adult males do: deluded myself.  Specifically, I pretended that having no solution for removing snow magically would prevent snow from appearing.  That didn’t work.  I passed a couple of winters shoveling Massachusetts snow the old-fashioned way, which did not put me in a better mood about the situation.

Then Nova turned me onto the idea of a gas-powered snow thrower.  Her logic was pretty simple: I couldn’t change the weather by pretending it wasn’t bad, so I needed better equipment.  I relented, and I admit it: it was probably the best $800 I ever spent.  Firing up its engine requires flicking enough switches and pulling hard enough on a starter cord that I feel like I’ve gotten physical.  I get to use a choke switch.  Who doesn’t love a good choke switch?  And it is marvelously loud.  Sure it is effective at throwing snow a long distance, but after the other benefits, I almost don’t care.  It has changed the way I look at snow.  And since we’ve had some winters where the snow hasn’t stopped, I deserve something that can do that for me.

Here’s what this has to do with being a Sandwich Generation father.

Over the past year, my father’s mobility has declined.  It’s a fact.  It’s to the point now where he shuffles his feet and not much happens.  He has trouble turning.  With a walker he can get himself down a hallway, but the clock is ticking on that as well.  So about 3 months ago, he asked me to help him buy a motorized scooter to help him get around.  Which I resisted.  My logic was that once he started using a scooter, he wouldn’t be walking again, which itself would have downstream consequences that couldn’t be good.

I held onto this logic for some time.  Like my pre snow-thrower delusion, I felt that I could hold back time a little longer.  It’s like trying to wish away blizzards in Massachusetts; you might get lucky for a while, but eventually, the snow emergency is coming.  And like that decision, it took someone else to point out that my logic was, in fact, delusional.  Actually, this time it took 2 people.

But, in my defense (which is the opening phrase of most indefensible defenses), this is my father we’re talking about.  We used to play tennis on the street where I grew up.  He helped teach me to swim.  He would lift heavy equipment onto his car’s roof as a core part of the way he made his living as a consulting cable TV engineer.  I didn’t worship him for these things – we just didn’t have that kind of relationship – but I always knew he was especially strong.

When my mother passed away 5 years ago and I saw her laying there in the hospital, he was the one who kept me from falling over.  He was 87.  I’ve held onto that as proof that he can defy time, and maybe by extension, that I can too.

Then I thought about what the scooter what mean for him.  Right now, he is trapped inside most of the time.  With one, he’ll be able to spend a few days outside instead.  He deserves to spend more time outside.  He gave up his car more than a year ago, and a scooter will be a machine he can control.  He deserves more things he can control.  And most importantly, he appears to have found a potential girlfriend who lives far away (that is, in a different section of the community where he lives).  For all his faults — more on this next time — he deserves to be happy, and I suppose this also means that he deserves a girlfriend.

These are all things that once pointed out to me were so obvious that I wondered what kind of daze I must have been in not to have seen them in the first place.

Do I do this with my children?  I like to think I don’t.  I don’t pretend that a lack of feminine hygiene products in the house is going to prevent my daughters’ bodies from changing.  But then, as with the blind spot I wrote about before, I’m sure I have one here.  I look forward to my next discussion on my back porch to discover what it is, and the particular Sandwich Generation delusion about my children that it is hiding.

The Moment

roger-federer-28a

My brother and family visited from California last weekend.  Traveling is challenging for them with a 6 year-old, a 3 year-old, a 6 hour flight and 3 time zones.  But because my father lives here and is no longer mobile enough to travel, they make at least one journey east every year.  This year the calendar page for September 13th said “Rosh Hashanah”, and thanks to a lucky series of sports scheduling and well-played tennis by Roger Federer and Novak Djokovic, it also marked the US Open men’s final.

When I was growing up, my father, brother and I would watch Wimbledon and the US Open religiously.  My father would yell at the TV and criticize the players for all of the “stupid” things they were doing.  It was a variation on a common theme in my house.  Anyway, if I close my eyes I can imagine Borg and McEnroe when I was 10, or Steffi Graf and Martina Navratilova when I was 18, or 1996 Graf-Vicario final we watched in Atlanta while visiting my brother.  And I remember watching the French Open with the 2 of them when my father was in the hospital in Princeton beating back post-colonoscopy complications when he beat colon cancer.

So in August this year, when I noticed how the calendars lined up, I started rooting for a #1 vs. #2 matchup at the US Open.  And then the players in the rest of the draw acceded to my wish and it happened.  It was as though destiny had one more epic tennis-watching session in store for the 3 of us.  My kids, who I have indoctrinated into becoming Federer fans, were ready as well.  My Sandwich Generation dad moment in front of the Flushing Meadow court.

Except that a rain delay pushed the match back from 4pm to almost 8pm, late enough that my father couldn’t watch with us, we had to serve dinner instead, and my kids were occupied with my nieces.  It was a moment that was not to be.

I mention this because my kids have moved into pre-teen mode and I can hear the clock ticking down their last few days as willing inhabitants of our home.  My father likely doesn’t have many US Open finals left in him.  The moments I have together with them take on a fierce urgency, each opportunity feeling more precious than the ones before it.  This is the benefit of mortality, I suppose.  It forces you to appreciate and savor the glimmers you get.

This is one reason that, unlike my brother, I am not a frequent videographer.  Maybe this is a mistake.  My philosophy is that I would rather be in the moment than observing it, and I have learned about myself that I don’t do both well.

Most moments I have with my father now aren’t scripted calendar-aided events.  Yes, my kids have their B’Not Mitzvah celebration coming up and with any luck he’ll be there.  But I am thinking of the pauses amongst the list of chores I perform at his place when he stops, thinks, and begins a sentence with “You know, I never told you….”  It’s not the notes that make the moments.  It’s the empty spaces between them.  The same goes for my kids.  It’s the small remarks, the impromptu dances they choreograph, the stories they offhandedly tell us when we’re playing cards and everyone has their guard down.  Those are the moments I already miss.

I checked with Google and learned that Rosh Hashanah 2016 is in early October, so there’s no US Open final during the holiday.  Maybe it’s just as well.  The 3 of us missed watching a pretty compelling final, but we’ll always have the 4th set tiebreak of the 1980 Wimbledon final.  A great moment that, at the time, we didn’t see coming.

The Four Stages of the Checkbook

checkbook

As Sandwich Generation dad, I serve many functions for my own father. Primary medication distributor. Friend and companion. Personal shopper. Dedicated email correspondent – he sends a lot of email, much of it about recently about why Fox News is right.  (I try to tell him that Megyn Kelly being attractive doesn’t mean that the network is always right, but I’m losing that battle.)  Pedicurist (not my favorite role).   Main technical support guy – only yesterday I bought him a new iPad and Zagg keyboard as his old ones are grinding to a halt.

Among these, one of the most demanding and complex is being his CFO: bookkeeper, investment advisor, compliance officer, head lawyer, and insurance manager. In particular, I manage his money. This was not a straight path from Point A to Point B. In thinking about it, I realized that like grief, it meandered at its own pace through the same 4 stages: denial, anger, depression, acceptance.

Denial

In this phase, the adult parent pretends there is no problem. My mother had managed the finances (along with most everything else) in the house, so after she passed away, my father was confronted with how to keep the bills paid. Or, rather, my brother and I were confronted with it as he had just enough interest in the problem to let us solve it for him. Which we did by (a) automating everything in sight, (b) consolidating the almost 10 bank accounts into one, and (c) trying to fix a very confusing credit card situation. We also got passwords to everything – which if you haven’t done with your parent already, you should do now BEFORE you really need to. Trust me.

We also pulled his investments from the full-service broker who, based on the floor-to-ceiling envelopes stuffed with trade confirmations suggested, somehow had turned my mother into a day-trader.  We moved them instead into nice, simple, boring index funds at Fidelity.

Anger

Next the parent says “I can do this myself – what the hell do I need these kids for?”  For us this happened about 4 or 5 months later.  He changes the online banking password so that you are locked out, pays his own bills for a while, and to prove that he is smarter than you, moves all the money to a full-service brokerage at the bank down the street.  Then he tells you “what the hell did I need you for anyway?” Then he brags to your wife and your sister-in-law about what he did. True story.

 Depression

In the next stage, the parent realizes just how much work managing everything is, and also starts to worry that he’ll run out of money because returns are terrible. Which, when you move everything back to a full-service full-fee broker at a bank who sells you the bank’s own proprietary full-load mutual funds, they are. This took us about 6 months where I just had to hope that he wasn’t making truly catastrophic mistakes.

 Acceptance

The parent realizes you had their best interests at heart and asks you gently if you’d be willing to look just once at their situation. You know, just to check it. Then they quickly give you the passwords back and accept your help in re-consolidating, simplifying and moving everything back to Fidelity. Tip: do not point that this what you tried to do in the first place.

In case I didn’t emphasize it before, for all you Sandwich Generation parents out there, get visibility as soon as you possibly can. This often is best accomplished in conjunction with a health scare of some kind as parents do not yield this information easily. Also, money is one of the great taboo subjects in our society, especially true between parents and children. This article from AgingCare.com lays out some interesting strategies; another one is from the Wall Street Journal.

Whatever you do, remember that it is not a one and done situation. It takes 4 stages. If you’re lucky.

 

No Time for Selfies

A quick note on what “the real world” is.

It’s been noticed and commented on by many that everyone is taller, faster, funnier and cooler on social media than in real life.  As the number of channels grows (Facebook, Twitter, Instagram, Google Plus, Pinterest for starters), it must be getting harder to build a #personalbrand.  But that doesn’t mean that people aren’t trying.

And if you think this seems silly on an average day, you can imagine how I react to it on days when I am locked in sandwich generation or caregiver mode.  Food porn selfies, videos of the great concert, car lust commentary, political rants to the echo chamber, absurd Top 10 lists, or nearly anything from the Huffington Post – it seems like another world entirely.  For some reason, it makes me feel  even more isolated than I do already.  On the bad days (and yes, there are bad days), it’s almost insulting that people are taking time out to advertise themselves.

Do I know that this is irrational and ridiculous?  Yes.  But it’s how I feel sometimes, and if you can’t recognize and honor your own feelings on occasion, you will not last long emotionally in the caregiver game.  Or the Sandwich Generation one.

I think this is especially true as a man, where you are often expected to advertise, publicly, that you are above feelings.

Not sure that’s going to make a worthy tweet.  #ohwell

Invite the Cow In

Image

Moo

As a sandwich generation man, I juggle competing priorities and events constantly.  Usually, I am cognizant that this is actually a sign of good fortune.  Sometimes it is easy to forget this, however.  Then you forget for a couple of weeks in a row and start to long for a simpler existence.  What if I could plan less?  What if I could just work as long as I wanted and finally conquer my to-do lists? What if I could go away for the weekend with my wife and not have one eye on my cellphone?

There is a story in Judaism of a man who lives in a small house with his wife and many children.  He is losing his mind with the noise and the crowded conditions.   He consults his Rabbi to ask what he should do, and is told to invite his cow into the house.  Not understanding why, he takes the advice anyway; such is the power of Rabbis in Jewish folklore.  He does so, and now, of course, it is worse.  Much worse (and don’t get him started on the smell).  So then the Rabbi advises him to banish the cow.  Suddenly, his previously unbearable cottage seems spacious, quiet, and more than enough home for everyone.

The emergency room is my cow.

Now that my father has emerged from his first Massachusetts hospital experience, I am looking forward to moving back into my cozy little cottage.  We’ll resume our usual Thursday frozen pizza dinners.  I’ll go back to being tech support on his iPad, and to reaching the light bulbs he can’t get to, and to expecting him late for everything.  I’ll have my next Saturday morning spent in front of our weekly-meal-planning-whiteboard with Nova, figuring out how to squeeze in one more meal with her and our kids.

True, I didn’t really invite the cow into my home; it sort of barged in.  But the same emotion applies: gratitude for the people I have inside the house and the hope I get to live here with them just a little while longer.

Classical Music, and the Reason and Will to Live

Is “caregivee” a word?  Well, if not, it should be!

As I’ve mentioned before, my father presents a classical music demonstration in his community every other week.  He does so by creating a YouTube playlist of performances around a certain theme, then writing up a short blurb that is edited by my brother or me and printed/copied by the community’s Activities Director (the soon to be world-famous Andrea), and then streaming them over wireless to an AppleTV box attached to the flat screen in the common activities room.  Very 18th century meets 21st century.

Anyway, this is his favorite project and the thing that he lives for.  If you are a caregiver, you know how important it is that your loved one have an organizing principle in their lives beyond taking medication and watching old movies.  This is his.

The “reason to live” is the slightly younger twin brother of the “will to live”, which is something we all pray for regularly, whether consciously or not.  They are inseparable.  In Judaism, I believe that this is what “Refuah Shlema” refers to.

Below is an excerpt of my dad’s latest presentation, done Wednesday.  It is his 2nd pass at Mozart, whose Eine Kleine Nachtmusik was the soundtrack to many of my childhood family road trips in my dad’s faux-wood station wagon(s).  If you don’t like classical music, enjoy instead the depth of the curating effort of a man armed with an iPad, a YouTube search bar, and a reason to live.

The Classical Music Hour

with

Andrea and Steve

Wednesday, March 5, 2 PM

MOZART REVISITED

WOLFGANG AMADEUS MOZART is perhaps the most popular classical music composer. He produced over 600 works, including 6 major operas, 41 symphonies, 28 piano and 5 violin concertos, many of them acknowledged as masterpieces in their categories.

Although a few samples of his work were introduced during the past classical music hours, a more detailed, more comprehensive examination seems to be justified.

The next 45 minutes, you will watch a great variety of Mozart’s masterworks, such as:

OVERTURE of the ABDUCTION FROM THE SERAGLIO, Vienna Symphony Orch. – Fabio Luisi

http://www.youtube.com/watch?v=GrFbiw77_90

MADAMINA Arie from DON GIOVANNI, sang by F. Furlanetto

http://www.youtube.com/watch?v=INF9r5jju0A

CHAMPAGNE Arie from DON GIOVANNI, performed by I. Kovacs

http://www.youtube.com/watch?v=wW_L6Fo7Fjk

THE QUEEN OF THE NIGHT Arie from the MAGIC FLUTE performed by E. Miklosa

http://www.youtube.com/watch?v=H_xfC9RXicU

OZMIN’S Arie, THE ABDUCTION FROM THE SERAGLIO, sang  by  Jozsef Gregor

http://www.youtube.com/watch?v=rvDZ9Ikvc7U

THE FAMOUS PIANO PIECE, TURKISH MARCH, played by pianist R. Brautigam

http://www.youtube.com/watch?v=HMjQygwPI1c

PIANO CONCERTO #20 – Romanze, played and conducted by Mitsuko Uchida

http://www.youtube.com/watch?v=qhNITXBguSs

VIOLIN CONCERTO #4, performed by Julia Fischer

http://www.youtube.com/watch?v=9Hqyxy9u4W8

SYMPHONY #40, first movement, Berlin Philharmonic, conducted  by T. Pinnock

http://www.youtube.com/watch?v=pIsMmuf9Q3Y

SYMPHONY #41 “JUPITER” – Chamber Orchestra of Europe, conducted by T. Harmoncourt

http://www.youtube.com/watch?v=zK5295yEQMQ

TURKISH FINALE from the ABDUCTION FROM THE SERAGLIO

http://www.youtube.com/watch?v=Tw84smtNE1Q

Caregiving Success: It’s Not Entirely Luck

I consider myself pretty self-aware; given how much introspection it takes to keep myself on the rails, I better be.  Every once in a while, I allow myself to take some credit for my father’s improved situation and my kids turning into warm, emphathic, smart and kind people (credit shared with my brother and wife respectively, of course).  So many things are out of our control in both situations that when a chapter ends well, you take a small victory lap even if you know already that the book itself is going to be a tragedy.

Brief side note: I have a good friend down the street who convinced me to buy an outdoor gas grill that I could connect directly to the line in my house.  Best thing I’ve bought in ages.  His logic was simple: as a father of daughters, you control so little in life that you need something that you actually do control.

Anyway, I am also keenly aware that much success in life and caregiving stems from luck.

Sandwich Generation: the symptom is the cure

Here is a screen shot my father took from a Skype session I had with him last night.

Image

Sophie and Daddy use the magic Skype machine

You can see my daughter Sophie in the shot – she was talking to him (this was about an hour after my last post about his C-Diff returning and feeling a distinct sense of whatever the opposite of the relief is).   You can see in the picture how happy they both are about it and the connection that’s formed.

Sometimes you can employ one side of the sandwich, so to speak, to help you with the other.  That is, the symptom is also the cure.

#bummedoutedness

My father’s C Diff is back.  He had some stomach “issues” last week (yes, that’s a euphemism for problems that require bleach to fix), and after 2 days had pased, he finally let me know about them.  To be honest, I think the main reason he confessed is that I was standing in his apartment, and the signs are impossible to miss even with your eyes shut tight.  So, confronted with my presence in the living room, he decided to fill me in.  Such is the advantage of having him close by and visiting regularly, I suppose.

Anyway – the tests confirmed what we’d suspected after last week’s incidents.  Getting the results, as you might imagine, required several phone calls to chase them down since, as I now know, doctor’s offices labs don’t perform stool samples; they send them out.  

So now we are moving on to treatment.  This starts with another round of antiobiotics that’s going to run “only” $800 – luckily, we are into a new calendar year so that takes us out of the coverage donut hole as described here in my earlier post on Medicare Part D.  

When you get C Diff 6 times, it’s pretty obvious that drugs alone can’t kill these bacteria, so alongside that, the accompanying protocol is what’s known as a fecal transplant.  Yes, it is what it sounds like.  

But augmenting your weakened stomach flora with healthy ones from another person’s gut is remarkably effective and, fortunately, not as yucky as you think.  Generally, it can be a non-surgical outpatient procedure using a GI tube.  Plus, we connected with the rocket scientist gastro-enterologist at Mass General Hospital during a time of my father’s seemingly perfect health back in December, so we are prepared.  And he’s generally feeling fine, with his symptoms under control and a high energy level despite not having Dificid yet.  So, all in all, I have great cause for optimism.

And yet — I’m experiencing a palpable sense of what I can only define as “bummed-out-ed-ness.” (soon to be a trending hashtag on Twitter).  I am.  I honestly expected to be past this thing.  I had repurposed the brain cells I’d targeted at C-Diff-related-thinking into more productive purposes.  I had mentally said goodbye and good luck to Dr. Jenny Sauk, the aforementioned rocket scientist gastro-enterologist at Mass General Hospital.  I allowed myself to luxuriate in the thought of a future free of conjuring the emotional energy required to demonstrate a can-do spirit, even though down deep lives the nagging feeling that this particular disease (a) wants to kill him and (b) isn’t going to take no for an answer.  

In a strange way, I am relying on him for some degree of emotional sustenance.  After all, this is a man who survived the Nazis, the Communists, colon cancer, and so far, this thing.  I suppose as caregivers, we have to acknowledge a symbiotic relationship; our parent’s willingness to fight on reinforces our strength to help them fight on.  The sandwich generation piece of this is that our children’s willingness to learn reinforces our strength to teach them.  In either case, if either side withdraws their energy, we need to be ready to feed it from our own reserves.  My reserves are high right now.  But I must confess that I had let down my guard against having to tap them again so soon.

In other words – I’m experiencing #bummedoutedness.  Look for it on a Twitter feed near you. 

You Know the Drill: Today’s Sandwich Schedule

Just an average Sunday schedule for the Sandwich Generation — you’ve had these too.  It looks like this:

8:45 – 10am: watch some Olympics with the kids, but mostly make sure that they are prepped for today’s swim meet and have done their Hebrew School homework.  Also had to jam in a few work emails.

10:30am-11am: review Hebrew School homework, figure out what on earth they are going to have for lunch, and negotiate over who is driving them where and when

11:30am (ish) – 2:30pm (ish): go over to my father’s apartment.  We were supposed to watch a movie, have lunch and go through photo albums.  My main agenda item is to see what I need to need to do now that his C-Diff infection clearly is back.  This leaves a mess (enough said there).  So, although he tells me that it’s not too bad and the apartment-facing camera appears to confirm that, I definitely have to check, especially the bed.  Luckliy I have spare sets of everything now (not the case when he first moved up here).  Which reminds me that we’ll need to get antiobiotics into him before I head away on vacation next Friday, preferably by Wednesday so that I can leave knowing that they worked well enough to regain control.  Also that reminds me that his other prescriptions need to be refilled.  And that we will need to make an appointment at Mass General to get the fecal transplant procedure set up.

2:30pm (ish) – 6:30pm (ish): Kids’ swim meet.

After 6:30pm: home.  Need to figure out dinner, as well as lunch setup for the week.

At least it’s a day where I can sort of plan ahead.  Glass half full.