Dementia Nights

The First Day of the Rest of Your Life is a Lot Like the One Before

Sorry for the long absence, though I suppose it was predictable.

I'd like to be able to tell you that I've been mourning, reflecting, coming to terms, working through the stages, all those solemn and proper things you're supposed to do at times like this, and then stepping forward into a fresh new world of openness and freedom...

Ah, that would be a no. 

The reality is this: I spent the whole course of his illness thrashing though paperwork, and that's what I'm still doing.

In my naivete I thought this round would be simple.  Yes, I know, nothing to date has been, but at this stage, finally, there weren't a lot of complications. His affairs were so basic that there wasn't even any need to probate the will.  Just notify the brokerage, shift his remaining assets into new accounts according to the requirements, and move on.

So I notified the brokerage.  I requested the forms necessary to create a beneficiary IRA and move the remaining trust assets into my brokerage account, which is what the trust agreement demanded.  The brokerage sent me an enormous sheaf of forms.  The forms seemed odd for some reason - I couldn't figure out why they wanted me to apply for a trust, since what I was trying to do was close a trust.  I decided to ask the lawyer, who didn't understand either.  So I called the broker's assistant, who got testy.  Then I tried the broker, who was on vacation in Florida and hard to reach.  Finally I asked the lawyer to contact the broker, figuring that it would be faster if I took myself out of the discussion.  They finally connected.  Between them they worked out that the forms didn't make sense because they were entirely wrong.  I didn't need to submit any forms.  I needed to submit two letters of instruction, which the lawyer proceeded to draft. 

I was ready to send them off when I reviewed them one last time and noticed that the broker had thrown in a line authorizing the sale of some securities to make it easier to divide them between me and my wife (the trust agreement says they have to be split 50-50).  Background: every time I sell a security, I have to get a time-limited authorization from my wife's employer, a federal agency.  The broker knows this because we've been doing it for three years - every time I had to set fire to assets to pay the cost of care.  But this time he decides to do an end-run.  So... trash the letter, go back to the lawyer and get a new one that doesn't include the sales authorization (can't revise the one she sent me because it's a PDF), send it to the broker and then call him and remind him that the rules haven't changed...

Fine.  All fixed.  And what does it matter that it took a while?  Nothing, except that it would have been nice to use a portion of them to pay for the astonishing funeral costs, which are still sitting on my Visa card.  A fast payoff would have killed the finance charge, but we missed that deadline, so now, with the meter running...

I can't concentrate fully on any of that because there's also the pharmacy bill - the enormous pharmacy bill.  My father absorbed more prescription drugs during his three-plus months at the nursing home than in his previous 87 years.  Thankfully, nearly the whole cost is reimbursable under his Medicare Part D benefit... which the nursing home's pharmacy seems unable to access.  They keep sending me bills and telling me that the claim has been rejected because his insurance was stopped in January 2009.  I call the insurer.  No, his coverage wasn't stopped.  It shifted from an outside claims-processing company to the main insurer.  The nursing home has been billing the claims-processing company, which no longer handles his case.  Can you give me the right claims information? I ask.  Of course, here it is.  I pass it along to the pharmacy, which thanks me for it... then sends me another bill.  Same story.  The insurer won't cover him.  Who did you bill? I ask.  The outside claims-processing company.  So back I go to the insurer and get the right billing information, and once again I pass it along to the pharmacy.  Then they send me another bill.  Same story.  Third conversation with the insurer, and then for the third time I pass the information to the pharmacy - this time by e-mail, copying everybody I've even spoken to or heard of who's had the least bit of contact with the case.  Of course my e-mail crossed the March invoice.  They've told me to wait for the April invoice because by then, everything will be settled....

Then comes good news.  I get what I thought was going to be the final bill for inpatient services from the nursing home.  But here's a surprise - it's not a bill, it's a credit.  It seems that, in all the rush of activity when I was getting my father moved here and closing out his apartment, I lost track of the billing cycle.  The room-and-board portions of the nursing home bill were prospective - you paid at the beginning of the month for the full month to follow.  At the end of January, I paid, not for January, but, in advance, for the full month of February.  Then my father died on the 8th.  The balance of the February payment was refundable.  And the refund is mine to claim - except that it's not.  When he was alive, I was the responsible party and I wrote a check on the joint account I used for my father's expenses.  But as soon as the payment was made, the funds became his.  And now that he's dead and therefore not in a position to authorize the refund. I can't get at them without a letter of authorization.  The letter of authorization is issued by the county's Department of Records.  And to issue it, all they need is... a will that's cleared probate.

So, back to the elderlawyer.  She tells me she'd be happy to probate the will but can't do that without an itemization of funeral expenses.  I don't have one of those - or if I did, I don't anymore.  Back to the funeral home, which tells me it's going to put an itemization in the mail.

Hasn't arrived yet.

And that's where we are.

There's nothing wrong with any of this, by the way.  Yes, it's different from what I expected.  But what in this experience hasn't been?  And while I could sit here complaining that the red tape gets in the way of my mourning experience. it occurs to me that that's not right - maybe the red tape is the mourning experience.  We live our lives in paperwork - why shouldn't we unravel in paperwork?  As for the nice peaceful segregated mourning experience, well, life doesn't really provide for that either, does it?  There's something fitting about my still being his administrator.  As in life, so in death - just sign here.

I'm sure that at some other level, reflection is going on.  I'll report on it soon.

LATER: The funeral home itemization came in today's mail.  So did a statement from Medicare noting their refusal to pay for his hospice physician because she's not an attending.  There's also a note from his Medicare Part D carrier that includes condolences for his death, and a statement that he's no longer covered as of March 1.  This leads me to wonder whether they'll accept the claims from the nursing home pharmacy - the prescriptions were written before March 1 but if the claims weren't submitted 'til after...

Sigh.

Let me get back to you.

"I Got Where I'm Going, and Now I'm Resting"

He always wanted that to be his epitaph.  If you knew about his life - no dramatic hardships, but all the career setbacks, all the family difficulties, all the financial anxieties, a few years of retirement that turned into caring for my mother during her illness, then falling almost immediately into his own - if you knew about that, you'd understand.

Unfortunately there's no room for an epitaph on the urn or the facing of the niche.  So this post will have to stand in for it.

We got him home.  The rest of the trip was uneventful.  I didn't wind up buying him a beer - sorry, Al B., but that'll have to come later, when it's warmer.  I did take him to a couple of magazine stands.  You couldn't possibly pass up a visit to a magazine stand.  When he was putting out his magazines, he'd stop into every magazine stand and candy store he could find and ask the owner what was selling and why.

Another story: one Saturday afternoon in the early 70's, my parents and I were taking one of our regular family walks on Broadway.  The magazine business was going south at that point and my father was very concerned.  For some reason we'd gotten into a discussion about how the magazine consignment business worked.  I'm not sure if this is still the case, but at the time, the magazine distributor was on the hook for all the magazines that went to the newsstand.  The distributor bought them outright - on consignment - from the publisher.  Then, week after week, the distributor would pull the magazines that hadn't sold off the newsstand racks, send them back to the publisher, and collect a refund.  If a magazine wasn't returned, the publisher kept the money.  That was true whether the magazine had actually been sold, or if it had been damaged or stolen.  From the publisher's perspective, a theft was as good as a sale.

My father, in his frustration over the crashing sales figures, pointed this out.  "That's the trouble with kids today," he said, loudly.  "They don't steal enough magazines."

Right at that instant, a very proper-looking elderly woman passed us going in the other direction.  She heard this, was startled, then, until she was more than a block away, kept turning around to glare at him.

So today he and I went over to Hudson News to see what was on display and what people were buying.

Then I walked him through Penn Station.  I made it a point to go through the Long Island Rail Road waiting area - small tribute to all those years when he commuted out to Atlantic Beach during the summer when I was growing up.

I got slightly concerned again during our two short subway trips.  The station at Times Square was full of the NYPD's black-suited death squads (a technical term that a friend who's a former NYPD lieutenant sometimes uses).  But no one paid us any attention.  We stopped briefly at Grand Central, then boarded the Metro North train to Woodlawn.  A few last images on the way: when we came aboveground at 96th Street, we immediately rolled past Mt. Sinai Hospital, and I thought about watching the trains from a window on 11 Center that Monday afternoon when we brought my mother there two weeks before she died.  Then, a few minutes later, we rolled out of Manhattan for good and into the Bronx (fitting - he lived in the Bronx 'til he was four) and I caught a glimpse of the Polo Grounds Towers and remembered his telling us about all the time he'd spent at the Polo Grounds.  There was 1933, when he was 11 and the Giants won the pennant, and 1934, when he was 12 and they didn't ("Do you think Bill Terry is crying tonight?" my grandfather asked him).  And there were all the afternoons when he was a reporter and he and the other guys in the newsroom would blow off work and head up there for day games.  Toward the end of one of them, they left early and came back to the office and were greeted with a note from the chairman, Louis Fairchild.  "Thought you gentlemen would like to know the Giants won it on an infield hit in the bottom of the ninth."  He'd been sitting a few rows behind them the whole time.

From the Woodlawn Metro North station, it takes just a couple of minutes to walk through the cemetery gates and into the office.  That's what I did.  And then it was back into formalities - more documents to be signed, the certificate of cremation to be handed over.  Finally I gave them custody of my father - handed over the canvas bag, actually - so they could transfer him (decant him?) into the permanent urn.

The sales representative - a slightly nervous, well meaning guy who used to sell insurance - drove us over to the mausoleum.  It's nice, but different - open air, with a bit of traffic noise.  That's OK - my parents were urban people.  The staff had set up chairs in case I brought friends or family with me (I didn't).  They set up the two urns - my father's and my mothers - on a small table, and I stood with them for a couple of minutes.  Then they placed them in the niches and I stood with them a little longer.  Then I gave the nod to tell them I was done.  I didn't want to linger.  This wasn't really a contemplative event - not with the granite removed, and the sales rep and the groundskeepers standing off to one side, freezing.  They would have given me as much time as I needed, but it didn't feel right to press.  Come the spring, or the summer, when the engraving is in place, I might take a trip up there when it's just me, and spend some time by myself.  It'll be a nice walk from the Jerome Avenue gate, once the trees are all in bloom again.

I shook hands, and thanked them, and then walked down to the gate and took the Number 4 train into Manhattan.  I rode with a bunch of loud junior high school kids who'd just gotten out of class.  That's as it should be.  Life is for the living. 

And that's that.  Seven years, one month and five days after my mother died and I became his caregiver, I helped him get where he needed to be.  He got where he's going, and now he's resting.

To paraphrase Eisenhower - I always liked the directness of his communiques - the mission of this allied force was fulfilled at 1429 hours local time, March 3, 2010.

Now I'm back on Amtrak, just north of Baltimore and ready to be done.

Thanks yet again to all of you who decided to travel along with us.

I'll be back in a couple of days with some thoughts about where we might go from here.

Northbound

Aboard Amtrak Train 86 now, between Wilmington and Philadelphia.  He's in the luggage rack, under my coat.

A story he liked to tell: when I was very small, maybe a year or two old, he took me to a Memorial Day parade, back when they still had those.  It was very cold but I wanted to stay, and eventually he put me inside his coat.  I have a trace memory of this.

Another story: I was a colicky baby and kept my parents up all night for six weeks running.  One morning my father staggered into his office building, after spending the night walking me up and down.  The woman who ran the newsstand in the lobby asked him what was wrong, and he explained.

She looked at him in that steely East European way and said, "Now you carry him around.  Later he carry you around."  He always liked telling that.

At the risk of repeating: It's all unremarkable.  It happens. Someday I'll get carried around again.

I brought him through the Metro this morning and through Union Station and onto the train with no problems.  There was a very enthusiastic Yellow Labrador attached to an Amtrak police officer sniffing the passengers, but it was interested in explosives, not cadavers, and anyway, ashes aren't a cadaver.  So it sniffed and went on, and I stood in line for a few more minutes wondering idly how many laws I'd already broken.

Leaving Philadelphia now.  Lots of stories there.  Actually, lots of stories up and down the Northeast Corridor, or the Pennsylvania Railroad right-of-way, as it used to be called.  Trains were a big thing in my father's life.  Again, this is nothing unusual.  If you were of his generation you lived with trains, the way we live with cars.

Still, a few impressions: there were, first of all, his wartime years.  I wonder how many times he passed through Union Station.  He went into the Coast Guard in the spring of 1943, and he was assigned to headquarters in Washington a year later.  From then 'til the end of the war he commuted to New York every weekend to visit his parents.  The way he described it, the travel was always an adventure.  The trains were jammed with servicemen.  Freight had priority over passengers - war materiel had to get through, so every time a freight was in a position to overtake, the passenger train was pulled onto a siding and sat there.  The New York to Washington trip could easily take all night.

Stories: there was the night (I think I've mentioned it before) when he rode all the way to Washington in the baggage car, sitting on a coffin.  There were no seats but it was the last train of the night and a couple of Pennsylvania railroadmen took pity on him.  He was a little self-conscious, but they all decided together that he had to sit somewhere, and the guy in the coffin probably wouldn't mind.  They talked trains all night.  Once again, I could do something with the irony of this but won't.  The dead have to move somehow, and trains were efficient then and they still are, and I wasn't going to do the cemetery day trip by car, so here he is and here we are.

Then there was the night the train was boarding at Pennsylvania Station in New York, and there wasn't a seat to be had anywhere.  From the back of the car comes a loud, official-sounding voice: "The next stop on this train will be BALTIMORE, BALTIMORE!"  Half the passengers in the car scramble out of their seats and pile onto the platform.  The train starts moving.  The guy who shouted strolls down the aisle.  Turns out he's not a conductor, and he has nothing to do with the railroad.  He's a serviceman who wanted a seat.  He finds an empty one, settles down, opens his newspaper and has a nice, comfortable, relaxing trip all the way to Washington.

There was a Friday afternoon at Penn Station when my father introduced his friend Nevin Fiddler to his parents.  Fiddler was a talented Midwestern newspaper and communications guy who'd joined the Coast Guard PR unit.  He was a little more experienced than my father, and so he was one of the people who taught my father the trade.  They wound up rooming together at a boarding house on 14th Street and Rhode Island Avenue.  One night, during one of those wee-hours discussions (bull sessions, they called them) that people had during the war, Fiddler asked my father in all sincerity, "Bud, tell me - why are all Jews communists?"  My father, instead of taking offense, realized that he was probably the first Jew Fiddler had ever met.  He spent the rest of the night explaining why all Jews weren't, in fact, communists.  A little later, he invited Fiddler to New York to meet his parents - including his father, who had famously declared, "No Jew can ever be your enemy and no Christian can be your friend."  My grandfather and Fiddler hit it off right away and spent the bulk of the weekend drinking and playing cards.  It was one of those small wartime breakthroughs you may have heard about.  The train helped make it happen and my father did, too...

Now through Trenton...

Philadelphia was big in the family history.  My father's mother's family was from Philadelphia, so his parents would make regular train trips down to 30th Street Station.  More often than not these got out of hand.  There was heavy drinking and mental imbalance on both sides of the family - the way you expressed this was to say that these were colorful people - but my grandmother's people had a slight lead in this regard.  There are many stories, but the one that comes to mind - one of my father's favorites - is Jimmy's funeral.  Jimmy was my grandmother's much older brother.  He was a big personality and he touched many people and to hear my father tell it, they all trooped into Philadelphia to pay last respects.

As he was sitting in the packed funeral home, waiting for the service to begin, a female relative he'd never seen before elbowed my father in the ribs.

"Eh!" she whispered.  "It's not Jimmy in the box!"

My father looked at her.  "Well," he said, "the guy in the box - is he dead?"

She blinked at him.  "Is he dead?  Yes, of course," she said.

"Then do you think either of them is really going to complain?" he asked.

While this conversation takes place, they're all sitting in the funeral home and the funeral isn't starting.  The reason for this is that, at roughly the same time that the female relative was getting agitated about whether this was or wasn't Jimmy, the funeral director had pulled my grandfather aside.

"I'm not sure how to tell you this," the funeral director said, "but we're going to need someone to guarantee the payment."

"What do you mean, guarantee the payment?" my grandfather asked in that rolling basso of his.

"No one has done that," said the funeral director.  "And without a guarantee, we're not going to be able to go forward."

A couple of hours later, there was my grandfather, pacing up and down the length of the platform at 30th Street, muttering to himself, "Guarantee the payment!  Guarantee the payment!"

My father paced next to him, saying, "Calm down, Dad.  Calm down, Dad," over and over.

"I didn't marry a woman," my grandfather said.  "I married a goddamn institution!"

Of course I wasn't there, but I can still hear my father acting it all out - our previous train-based funeral.  We brushed by it this morning on the way to our own.

More trains.  Flash forward a generation.  My wife's family is also from Philadelphia, and in the spring of 2002, my parents took the train down on a Sunday morning to attend my in-law's 50th anniversary brunch.  It was the last trip they took together before my mother had her final illness and everything came apart.  They had an extremely nice time that lasted all the way to the return trip, when my wife and I joined them and I managed to smack my father in the head with the door to the overhead baggage compartment...

Flash forward again, and there's my two years commuting by train from Washington to New York every week - 2007 'til 2009, all Alzheimer's management and blinding fatigue.

And now here we are in Metropark.

There's a processional quality to this morning's trip - something funerary, for me privately, at least.  There's a good slow reflective rhythm to it.  For everybody else, it's just another Amtrak ride.  Or maybe not.  You never know what baggage people are carrying.

I guess the stories add up to sort of a wake.  Wakes are a good thing.  It occurred to me that maybe, when we get to New York, I ought to take him out for a beer.  But maybe we'll just travel straight through.

It's nice to have all this pass in review but the important thing is that he's nearly back where he belongs.

Going Home

On October 29 I brought him from New York to the DC suburbs.  Tomorrow I'll take him home.  Paperwork is in order and train reservations are set.  I have a nagging concern that Amtrak security won't be enthusiastic about ashes, but I'm told the cremation certificate will get me through.  We'll see.

Technology permitting, I'll post tomorrow on the trip to New York, and again on the trip back.

We're nearly there.