Dementia Nights

Things Go South

So... when I left off the story, the situation was this...

It was the middle of 2002.  Over the previous year, there'd been a couple of major family upheavals.  But they were pretty firmly rooted in a long history of conflicts, and though my father's reactions had been extreme, I couldn't say that they were abnormal, given all the circumstances. 

He was, on the other hand, having trouble with names.  That was a new and persistent enough problem that by mid-year, I was talking to my mother about it and beginning to have anxiety dreams about it as well.

That's where we were when my mother's breast cancer broke loose.

Now, even at this late remove, the story of my mother's final cancer rounds is difficult to deal with.  In fact, my reluctance to come to grips with it probably accounts - more than I'd like to admit - for the long silence on this blog.  But since it's part of the story of his Alzheimer's, I need to come to grips with it.

There's this caveat, however.  This blog is about his Alzheimer's, not her cancer, so I'm not going to go into too much detail about her story except to the extent it has a bearing on his.

A few general observations, though...

 She was first diagnosed in 1982, just a couple of weeks after I graduated from college.

She lived with cancer for 20 years and just over seven months.  That was quite a stretch.  Her cancer was the slowest-moving thing in creation until, suddenly, at the end, it wasn't.

Her living with cancer meant that she was able to participate in some wonderful family events, like my wedding.  She was also able to participate in some ugly ones, like the massive fight over my brain-damaged, post-suicidal cousin.  And she played her part in creating some hellacious misunderstandings.  All of which suggests that, yes, as the "Stand Up to Cancer" people would have it, living with cancer is a rich, full experience.  It does not, however, suggest - as they do - that life is a wonderful warm process of affirmation.  It is, but it's also an appalling clumsy blood-feud, and an arena for confusion and hurt, and everything in between.  In other words, life isn't some consumerist self-help fantasy about feeling good about yourself.  Life is just life.

When she was diagnosed, I realized that things were going to be difficult.  What I didn't realize was that the next 28 years of my life were going to be caught up with family illnesses.  I didn't fully realize this 'til after the fact.  Your life often has nothing to do with what you think your life is about.  This is usually not at all clear except in retrospect.  For the longest time I thought my life was about having a career and advancing through a series of achievements and becoming progressively more secure.  I was wrong.

My father was  my mother's caregiver all the way through her illness.  At first that wasn't a full-time job.  He continued to write and work as an editor for as long as that gig lasted.  He also took over for her in real estate sales.  When I went to college, she'd gotten a license and gone to work for a small brokerage that handled small, mostly eccentric Manhattan co-op apartments.  She was able to return to that in between treatments and during good stretches.  But he got his own license and tried to pick up the slack.  He liked it.  The apartments were unusual and difficult to sell (I remember one on West 38th Street where the building had a 200-year lien on the title), and the people were interesting (there was the investment banker who owned that West 38th Street apartment who had a stress-related drug problem - one day when he was showing it, he found her unexpectely, asleep in the bed.  He threw a comforter over her and went on with the showing.  The prospects never noticed).  The work captured what he'd like best about being a newspaper reporter, which was talking to people and getting them to open up.  He said it was like reporting without having to write the story, which he didn't enjoy nearly as much.

But in addition to all that, there was the caregiving - running her back and forth to her medical appointments, interpreting for the doctors, helping her through her year of chemo, getting her through another surgery when she had her recurrence in '91, in general trying to keep her morale up.  He once said to me - this was well into what should have been his retirement - that he'd never worked harder in his career than he was doing running her medical care. It became a full-time job over the years.  By the late 1990's, he wasn't doing anything else.

Then there was the finances. The two surgeries and the chemo were covered, first by private insurance, later by Medicare.  But most of the time, she was treated with hormone therapies - Megace for the longest time, then other agents when that became less effective.  All of them were prescription drugs taken at home, not administered in a doctor's office.  At the time there was no such thing as Medicare Part D, and no one that I'm aware of had private prescription drug coverage.  The cost was hellacious.  So on a limited income (the magazine business was on its last legs, the real estate business was a hit or miss - mostly miss- affair), he tried to juggle the decent-but-not-huge nest egg he'd inherited from his mother and make sure it was generating enough money to cover her meds and keep food on the table.  Mostly it worked, and thanks to some skillful management on the part of the broker, the principal grew just a little faster than the dividend and interest income and the rest of the growth component flowed out to the pharmaceutical industry.  But it was a close thing.  Sharp market downturns, like the ones in '87 and '98 and 2000-2001 and others created by our titans of finance, were truly scary.

My mother, who had, among many other qualities, an angry sense of entitlement (actually, it was more a sense of justice - she wanted to live well in compensation for past slights) never fully got the economic reality of the situation, and spent a certain amount of time being furious with my father because he kept turning her down for European vacations and other things she wanted to do.  This was intermittent, though.  They did manage to get to Martha's Vineyard after the season a couple of years running, and there was a place they found in Spring Lake, NJ that they liked.  But the tension was always in the background.

My father decided to do without many things he might have liked - or I think he decided that.  It was hard to tell because over the years he developed a monastic quality so fully that it was hard to tell what part of it was compensation for his circumstances, and what was just him.  Either he learned to adjust to a simple life or he was naturally suited for it.  It was difficult to say.

One of the things he did without - as I've mentioned in the past - was long-term care insurance.   Given the time period - 1980's and 1990's - I'm not sure how widespread long-term care insurance was.  I don't recall any conversations about it.  So I don't want to overstate the case that this was an either-or - a Hobson's choice, or Sophie's, or some sort of choice like that.  But the fact remains that if he thought about long-term care insurance, he wouldn't have been able to act on it because he wouldn't have been able to afford it.  For one reason or the other - either it didn't exist or the cash wasn't there - it wasn't an option.  Years later, when I was setting fire to the same cash reserve to pay for his care, I found myself wondering why someone as cautious and prudent as he was hadn't bothered to cover this one critical eventuality.  The answer is that he couldn't have done it even if he'd tried.  I sometimes talk about this with right-leaning friends who are convinced that life is a drama of individual achievement, and that those who fail are somehow being justly punished by The Market for their lack of foresight or initiative or what have you.  The answer, for me at least, is more complicated.  A broken healthcare finance system is a broken healthcare finance system, you can easily find yourself without any viable options, and as they said in the Second World War, you never see the one that gets you.  He prepared for everything but the circumstances he actually found himself in.  Preparing for those circumstances wasn't an option.

Why do I go on at such length about the circumstances of her cancer?  Because, in a nutshell, this is the atmosphere - this is the context - in which my father's Alzheimer's developed.  Now, I'm not suggesting that there's a simple one-to-one relationship between the stress he was under and the degeneration of his brain.  As I've described, his Alzheimer's has a likely genetic component that encompasses his sister and his mother and maybe many others besides.  But the stress couldn't have helped.  Imagine that your cognition is being challenged, your thought processes are getting troublesome in dozens of small ways that are barely evident, that underneath all this, the disease mechanism is in full swing - and at the same time, every day, your brain is being subjected to a huge bath of stress-related neurochemistry and your bloodstream is full of cortisol and who knows what else.  Your system is marginal to begin with.  Can any of this be good?  I can't speak as a medical professional but I doubt it, somehow.

All through the course of her illness, my mother had little outbreaks - there'd be unrelated skin cancers and such - and other health problems, like the heart disease and diabetes she developed as a result of Megace-related weight gain (steroid treatments may also have played a part).  And then there'd be aggressive moves by the primary cancer.  Dr. R - he was her oncologist long before he became our family physician - would change drugs and hold the line 'til something else happened.  It was a constant game of whack-a-mole.

In early 2001 she had a more tenacious outbreak that required a round of radiation treatment.  By midyear it seemed to have succeeded.  In the late spring of 2002 the same thing happened, and the radition worked for a while.  In October things seemed normal, and she and my father were starting to do holiday shopping.  In mid-November the pain returned.

We'll pick up there.

 

After a Hiatus - Picking Up the Threads

Apologies.  I  hadn't meant to go silent for nearly this long.  I could offer you plenty of explanations - workload has been heavy, the economy has picked up, I need to make up for billings I lost during the last few months of the Alzheimer's adventure.  Or - fatigue is still an issue, I was a bit too optimistic about my ability to get over it fast.  All of which is true, up to a point.  But the underlying issue is - and I know this won't surprise any of you who's been here - there's a part of me that just doesn't want to deal with the subject anymore.  I never used to understand - well, intellectually I did, but not at a gut level - why people who'd been through the experience would just walk away as soon as it was over.  Wouldn't you want to draw on all that experience and try to benefit other people who are still going through it?  Of course you would.  Except that you can't.  You have the intention, but every time you try to organize your thoughts or your effort, something fails.  You want to write, or volunteer on the online forums, or help out with local support groups, or visit or e-mail your friends and neighbors who are still on the territory.  But in each instance, you don't.  The energy just isn't there.

On the other hand... all those other impulses are legitimate and have their own weight.  There are people still going through it.  Nobody else understands what they're going through.  The disease is still represented to the outside world as some sort of Hallmark-style slow fade into misty water-colored memories et cetera et cetera - instead of the ongoing horrorshow that it actually is.  No one who isn't already boiled in caregiving knows what to look for.  The recent flap about Ronald Reagan's early Alzheimer's symptoms - a debate in which no less an authority than Lawrence Altman of The New York Times could get his facts wrong - suggests that there's work to be done, and that those of us who've been there can help do it.

I don't want to overstate what I can contribute or get all carried away with a sense of mission.  I'm not sure I actually know that much about Alzheimer's.  I know a lot about my father's Alzheimer's, which isn't exactly the same thing.  Every case and every situation is unique, and it's not clear to me that anything I can describe is of any value to any other caregiver.  Frankly, one of the reasons I dropped away from the Alzheimer's Association message board, where I'd been volunteering, is that I got tired of giving my one piece of advice - "hire a geriatric care manager" - to people who either couldn't afford one or didn't want on or didn't need one.  When you've seen one case of Alzheimer's, you've seen one case of Alzheimer's, as the saying goes.  Still, maybe there's something I saw or went through that strikes a chord.  And at the end of the day, for those of us who aren't professionals or credentialed experts, what can we offer except our own experience?

So let's try.  Either the story is interesting and useful or it isn't.  If it isn't, click on - maybe somebody else's will be.

So.  When I left off, we'd been talking about my father's earliest symptoms, and wondering if they really were symptoms after all.  There were some speech issues, and nothing much else.  It was the middle of 2002. 

We'll take it from there.

Thanksgiving, After the Smoke Clears

The past couple of years I've written Thanksgiving entries, agonizing over whether to be thankful and how, and what to be thankful for.  Two years ago, there was this series.  Before that, there were other Thanksgiving agonies - Thanksgiving 2003, for example, which was the one where I first learned how to apply the Heimlich maneuver, or Thanksgiving 2006, when I first had to conclude that he probably had Alzheimer's.  I'll describe both of them in more detail shortly.

I thought last year was comparatively easy, and in a sense it was.  But it was nothing next to this year.  This year is absolutely straightforward.  It's my first Thanksgiving since my father died and I'm thankful he's not here.  Finally I don't have to worry about how he's spending the night, or that I'm spending it away from him.  No need to think about whether the home health aides or the nursing home staff are looking after him properly.  Tomorrow my wife and I will drive to Philadelphia to visit her family, and Friday we'll drive home, and I won't have to be concerned with anything outside of the trip itself.

As to the fact that it's my first Thanksgiving without him - well, no, it isn't.  He was mostly gone for the last three of them.  Once again - as in most things Alzheimer's - the grief is long in the past, and the end is about freedom, not mourning.

So I'm thankful for the freedom, too.  And for the relief.  Let's not forget relief.

Most of all, I'm thankful that he doesn't have to spend a weird, out-of-rhythm day, with temporary staff and unusual foods and bizarre spinning thought fragments and patterns that don't fit together. 

Maybe he'll experience tomorrow as liberation, too.  Maybe not.  Hard to say.

But it's liberation nevertheless.

Happy Thanksgiving to all, and I hope you find the liberation you need.

"Because You're Dead, That's Why," and Other Post-Alzheimer's Notes

Wow.  Hadn't actually realized I'd been gone for a couple of months.  Sorry - I hadn't meant to disappear like that.  Sincere apologies to all regular readers and posters.  I've appreciated your recent comments - it's nice to be reminded that the blog means something to you and that isn't just my personal exercise.  The fact that that's so is reason enough for me to kick it back into shape.

I can continue to report that they're right when they say it's a process, this mourning business.  I can report also that it still doesn't feel like what you're led to expect.  Months on and still no overt grief or anything like that.  On the surface I seem - even to myself - to be back in shape and fully functional.  I do my work (there's a lot of it at the moment, thankfully - I still need to make up for the three months of income I lost during my father's move to Maryland, the apartment closeout, his nursing home stay and his departure). I slowly get re-engaged in life - I go to movies and concerts and such.  I don't feel exhausted the way I used to - at least, not as much.  No, all normal and functional and re-engaged except that, as you may have noticed, I find myself avoiding the subject of Alzheimer's and the company of other caregivers for months at a time.

Which means, I suppose, that below the surface, there's still work going on - the usual business of deep unconscious forces bumping and crashing into each other and re-arranging the furniture. 

By way of confirmation, there are the dreams - still.  They're less frequent than they were, and the content is different than it was in the first few months after he died.  He seems less decrepit now - sometimes younger, almost always a little more competent.  And the storylines are different - less about managing him through the specifics of Alzheimer's, more about other matters.  

Case in point - a fragment that came in at the end of a long elaborate sequence about some other topic entirely.  Just as it wraps up, I suddenly find myself sitting next to my father on a park bench.  He's old but for the most part seems intact. 

For some reason I'm telling him about upcoming performances I'm supposed to see at the Kennedy Center here in DC.  In particular I talk about musicals.  I'm not sure why - I don't actually like musicals, though I'll go to a couple this season because the productions are supposed to be good. 

He listens and then suddenly there's tension in the air.  I notice he's got a tight smile - the kind he used to get when he was pissed off and just about to blow up at you (he could never admit to having a violent temper so when he started to get angry he'd just grin in an enraged way).  He says, "I wouldn't have minded going to some musicals, too."

I immediately feel stricken, which must have been his intent.  I'm thinking, oh, hell, that's a huge oversight, how come I didn't invite him?  I start trying to scramble through excuses, though I haven't worked out what they are.  At the same time my mind is going full speed - I'm thinking to myself, can I still get tickets for him?  He's not going to get anything out of Hair, of course, and he won't like Wicked, that's too commercial...  but wait, there's South Pacific, the Lincoln Center Theater production on tour, that would be perfect.  It's his timeframe and he loved Rodgers and Hammerstein.  That's it!  I can probably get him into South Pacific.  It shouldn't be a problem.  Tickets are easier to come by here in DC than they used to be in New York, even to big events.  There's less friction in DC.

So the crisis is solved and I turn to him to tell him about South Pacific when suddenly I stop and it dawns on me - hold on, wait a minute... the reason I didn't invite you to South Pacific is... that... you're dead!  Of course it didn't occur to me that you'd want to go with us to the Kennedy Center.  Because, you know, you wouldn't actually be able to show up.

I'm thrilled to realize this is the answer.  I'm vindicated.  Not inviting him, it wasn't just an oversight on my part, I actually had a reason.  And I also realize that at this particular moment I feel great.   Because, face it, I'm about to deliver the ultimate comeback.  Somebody - and not just somebody, this extreme, anxiety-provoking authority figure - asks you, why didn't you do something for me?  And you say, well, because, face it, you don't exist!   

And naturally, right at that instant, just as I was turning to him to tell him what I knew, I woke up.

Can you spell frustration, boys and girls?  I wanted to punch a wall, or anything else hard and nonsentient.  I even tried to fall back asleep so I could continue the dream and slam him.  Didn't work.  Never does.

The Germans call this treppenwitz.  I'm thinking about submitting this one for honors to whatever body it is that hands out treppenwitz awards.

As to the meaning... well, it doesn't take a genius to figure that out.  Message to deceased father - I'm happy to maintain the relationship and maybe it'll even get better and deeper over time, but as to the guilt and sense of obligation and the long overhanging burden... well, there are limits.  And I think we've just reached one.  So how about some slack?

Maybe this new sense of freedom will get traction.  Maybe it won't.  Time will tell.

But with it or not, it's past time for me to pick up the story again. 

More soon.  Again, thanks to all of you for your patience.

It's good to be back.

 

The Naming of Cats and Other Alzheimer's Evidence

I'm still not nearly as active here as I'd like but I've been busy behind the scenes - sifting and filing and discarding material, both figuratively and literally.  Re: the latter - it's roughly a year since I got started on the last big physical challenge, which was the act of getting him admitted to the nursing home and moved from New York to Maryland.  I expected a whole series of challenges to follow, and some did, but thanks to his death at the beginning of February, some didn't.  For example, there won't need to be an application for Maryland Medicaid in 2012.  That means that reams of support documents and financial paperwork can go into storage.  I could probably discard them, but since his finances aren't completely closed yet, you never know - I might need to pull some form or other to help settle his nursing home pharmacy bill, which is still open on the books.  But having them in storage is better than having them underfoot.  I can see my office floor again.  That wasn't the case even a couple of weeks ago.

Since we're noting anniversaries, I'll mention in passing that this coming Saturday, September 11, would have been his 88th birthday.  I'm not feeling anything at all about that except a sense of relief.  His birthdays were becoming a form of torture, and given the trajectory he was on, I don't know what we would have done to observe this year's.  Probably nothing - to ignore it would have been the kindest thing for everybody concerned.  Better to have it all done with.

As I sort papers I'm finding or rediscovering other items - the magazines he edited, his courtship letters, the press release he wrote about the Coast Guard's participation in the Roosevelt funeral, a series of bank statement that show the progressive loss of his ability to work with numbers and spell and write his signature (or even write anything resembling a signature).  At some point sooner rather than later, I'll buy a flatbed scanner and post some of it here to share with you.

One of the rediscoveries isn't a physical object, rather a memory that helps me answer the question I've been working over in the past couple of entries - when did he first show symptoms?  The answer was right under my nose - in fact, I've even blogged about it a couple of times before, but for some reason couldn't remember it when I needed it.  It has to do with the names of the family cats, which locate his symptoms more accurately than my dreams did.  I've heard that the naming of cats is a difficult matter.  It was in this case.

My parents adopted the first of their final set of cats in July 2000.  I've told you about him - he was (is) a somewhat odd white cat with ginger markings called Scooter.  The oddness has to do with the fact that he's not really comfortable in his cat skin - I always got the sense that something had gotten screwed up with his current incarnation, he wasn't supposed to have been a cat, and he's spending all his time figuring out how to work this cat thing he's found himself in, sort of like Vincent D'Onofrio in Men in Black. 

I remember vividly the first time I saw him.  For some reason or other, probably work-related, I hadn't been able to visit my parents for a couple of weeks, and they decided to entertain themselves by "forgetting" to mention to me that a cat had arrived (they hadn't had pets in years).  I finally showed up on a Saturday afternoon, opened the door and saw this animal crouching in the foyer.  Complete moment of cognitive dissonance while I tried to work with the available information and then I asked them what seemed at the moment to be the most sensible question I could come up with: "Uh... are you guys aware there's a cat on the floor out here?"

People generally assume that Scooter was named for Phil Rizzuto, but he wasn't.  He was named for the Razor Scooter that had just been introduced, and had touched off a major fad.  My mother had gotten obsessed with the Razor Scooter - absolutely had to have one.  My father was resistant.  My mother's cancer treatments at the time involved steroids and hormone therapies.  She'd gained a significant amount of weight and her balance wasn't very good.  In the past couple of years she'd fallen twice - once she came away with a gash over her eye and the the other time she broke her wrist.  So he wasn't eager to have her tooling around the Upper West Side on her Razor.  My mother, being who she was, was actively unhappy about it - I'm sure she understood the reasoning but the scooter meant freedom (and there was probably some sort of obscure childhood connection) and her condition meant a kind of imprisonment.  She was angry and depressed.  The cat was a consolation prize - therefore, "Scooter."  I'm not sure who named him - I think they collaborated on it. 

You can see how complex and allusive and psychologically acute the naming process was.  This sort of complexity and irony was a family tradition - when I was growing up, one of the pets was a parakeet called Fricassee.  Scooter fit right in with that.

The second cat arrived sometime between the winter and the summer of 2001 - closer to summer, I think.  He was another shelter cat - a white longhair who might have had some Persian in him.  My mother named him Snowbell or Snowball or something along those lines. 

My father couldn't figure out the name - couldn't remember it, couldn't hold onto it, and it seemed that at some level, it just didn't make sense to him.  In 2000, Scooter became Scooter, but in mid-2001, Snowbell had to be renamed, and became Whitey, which my father could manage.

The third cat joined them in December 2001.  She was a small, shy tabby (she's since become an alpha who dominates my friend Adam's household, which also includes poor Scooter - who, by the way, dominated Whitey and drove him into a new home in mid-2002).  Because of her size, and the need for another simple name, my mother called her "Baby."  That didn't work - my father couldn't work consistently with the two syllables.  So Baby became Babe.

Those are the data points that give us the first appearance of the Alzheimer's symptoms - as early as January 2001, certainly by July 2001, and worsening by December 2001.  By the time I talked to my mother about him, and had my dream about him, the speech/naming problems had been in evidence for 6-12 months.  That makes sense - it'd take that long for a low-order problem to get under your skin to the point where you'd start dreaming about it.

The symptoms were, of course, very low order - there were the name- and noun problems but nothing that pointed to memory or reasoning.  As to other possible issues - the cat timeline confirms that the speech issues were already in evidence at the time of the enormous fight over Uncle F.  But I don't have evidence to connect the two.  The Uncle F fightmight just have been another in a series of family events, and didn't necessarily point to disinhibition or failed reasoning or increased rigidity or other forms of cognitive damage.

Still, every history needs a starting point and now we have one here - symptomatic Alzheimer's in evidence in mid-2001. 

For the record, that's more than two years before my father showed anything that I recognized as cognitive impairment, more than four years before I used the word "dementia," and more than five years before I started to think seriously about whether he might have Alzheimer's.  Maybe this shows that I'm slow to catch on.  But I think it also indicates how difficult it can be to recognize early signs of Alzheimer's, especially when your life and the patient's life are rolling along and you're mainly concerned with other things and Alzheimer's hasn't yet become the sole focus of your life.

The fact that his Alzheimer's didn't present as memory loss is another issue.  I've said before and I'll talk again later on about how large a problem it is that Alzheimer's folklore and propaganda is fixated on memory, when in fact many other symptoms are possible.  My father had no real memory problems until very late in the process, and that kept me from recognizing what was going on because, like a lot of other people, I'd bought into the storyline that says that Alzheimer's equals forgetting.  Not necessarily.

This history has veered off course a little, as histories (or notes for histories) tend to do.  Next time, I'll pick up where I'd meant to - at the time of my mother's last illness, when my father's reasoning started to fray.  Unless, of course, the papers turn up something else worth noting, in which case we'll go there, instead.

Difficult, this memory business, but in the end it'll get us where we need to go.

They Keep Emptying Out the World, or, 1955 Draws to a Close

Well...  I thought I was about to regain momentum on the blog, but apparently not yet.  It's long, this recovery process.  I'm beginning to think that the issues are less psychological than physical.  It's like this - you hold yourself like a clenched fist for seven years, tense and alert and ready to respond to the slightest sign of distress or emergency.  Suddenly all that's gone, and you tell yourself you're going to relax... and of course you don't.  The fist is still a fist, and it stays that way for quite some time before it slowly starts to open up.  As of the moment my hand doesn't seem to be as useful as it was... or as it's going to be, but later than I thought.

So apologies to readers and commenters.  You deserve better and it's on the way, slowly.

Catching up, and rereading the most recent posts, I realize I never mentioned that my father's cousin Harriet died at the end of March.  I could make something of that if I wanted to - as, in fact, E did the last time I spoke with her.  "I think what happened is your father needed someone to talk to," she said.  Who knows?  She's a committed Hindu and maybe she's onto something.  My own take is simpler - my father was 87 and Harriet was 94 and when you hit those numbers, things happen.  Harriet didn't sound well when I phoned her right after my father died.  She was sharp as always - acid, in fact (asked pointedly if there had been doctors in the nursing home, the clear implication being that of course there weren't and I'd abandoned him in some kind of death warehouse).  But she was also housebound and tired, and her heart condition wasn't responding to treatment any more.  She was gone less than two months later.  So the October meeting, the one I wasn't able to attend, was the last for both of them.  Arthur, her brother, called to tell me, and suggested we meet the following week when he and his girlfriend were planning to visit Salisbury, Maryland.  But he never got back to me about arrangements - I didn't expect that he would - and that's probably the end of a small revived patch of family relationships.  It was good that Arthur found my father and that they all had some time together, decades after they'd lost touch with each other, before they headed out.

Then in July, Aunt R - my mother's sister - called to tell me that her husband, my Uncle F, had died.  He, too, was just over 80.  But he'd been active 'til close to the end, when a fast-moving esophageal cancer took him out.  He'd been a lawyer with a high public profile.  Earlier in life there'd been some ethical questions (something about funds disappearing from a trade association) but we could never pin them down and finally they got buried under his good standing.  In his last years he developed a passion for the Internet and used to send out five or ten e-mails a day with links to various news articles and op-eds, mostly left-leaning.  Sometimes he came close to crashing my in-box.  For a while my smartphone became a strange ghost image of earlier family history - there were F's e-mails and there were incoming calls from my father's home health aides and care managers.  Nothing beside remained.

"They keep emptying out the world," as Travis McGee said at the beginning of The Girl in the Plain Brown Wrapper.  Yes, people in their 80's and beyond, but still you get this sense of things vanishing.

In a roundabout way, Uncle F's death brings me back on topic - that is, to the task of trying to reconstruct the onset of my father's Alzheimer's.  A little background - my father and Uncle F were on opposite sides of one of the main fault lines in a long, bloody family history.  This is probably no different than anybody else's family history, but it has its specific bits of local color, and the whole thing came to a head (again) just before, or maybe during, my father's first symptoms.

I'll elaborate some other time but here's the short (!) version.  My parents met in the summer of 1954 at an "adult camp" called Green Mansions, were engaged in less than a week, and married less than six months after that.  This was highly uncharacteristic for both of them, but there were reasons.  My father was trying to escape from his childhood home (his father was in the middle of a series of suicide attempts, his mother had just had surgery for uterine cancer, one of several fatal diseases that failed to put a dent in her before she eventually died at the age of 91 in 1977 with something that might have been Alzheimer's though we didn't call it that at the time).  My mother was trying to escape from herchildhood home, in which favored younger sister R had given up on the law to marry equally young F, which event - the marriage, not the career abandonment - was a victory for my grandmother E, a terrifying Russian emigre with a keen intelligence, a frightening temper and the emotional makeup of a two year-old.  I think she must have been left alone a lot as a child and wound up feral.

So my father flew out to Detroit to meet his future in-laws.  As he described it, grandmother E took one look at hm and stormed out of the room.  There was Russian-accented shouting - something to the effect that "he looks like a henimal!" - and she threw him out of the house.  She wasn't going to have her daughter marrying some newspaper reporter who hadn't quite evolved.  The courtship was interesting from that point onward.  The wedding took place in New York (groom's territory, not bride's) on February 5, 1955.  Grandmother E refused to attend.  There are dozens of photographs in the album, and in each of them, everybody looks grim.

Now as happens in these things, there were complications.  My father's parents didn't take to my mother, or maybe it was the other way around.  They thought she was a spendthrift, though it might be that they were reacting to the chip she must have had on her shoulder.  She, of course, claimed that the chip was the result of the reception she got.  There was more disillusionment.  She and my father had some sort of enormous fight on the first night of the honeymoon, which for some reason he insisted they take in Quebec in the dead of winter.  She wanted a glass of water, he didn't like the way she asked, he didn't like how he reacted, and all the built-up tensions of the previous six months came out.  As a result of all this, her illusions collapsed and she never quite committed to her new life in New York.  My parents stayed bonded - or bound, I'm not sure which - but family relationships fell apart on either side.  I have childhood memories (backed up by notes, thanks to my mother's papers) of huge tensions and massive screaming fights, usually in close proximity to in-law visits.  Finally the others were mostly driven off and it was just my parents and me - a sort of post-nuclear family.  There's a reason why, when my father's sister, my Aunt E, died of Alzheimer's, we were completely out of touch with her.  In my parent's lives, it was always 1955 - or at least, the year was an enormous gravity well that they fell into whenever anyone felt slighted or some family conflict came up.  They tried to climb out of it and live in the present but they never could.

In the late spring of 2001, there was the last of the blow-ups.  This was a little more than a year before I started dreaming about my father's word-choice problems.  The circumstances were these.  In 1982, just as my mother was starting on her first round of chemo, I was sent in her place to Chicago for the wedding of her youngest niece, the daughter of Aunt R and Uncle F.  The middle sister, in law school but not yet married and struggling with her increasingly large demons, chose the weekend to try to commit suicide.  She failed in such a way that it might have been better for all concerned if she'd succeeded.  She's still alive, 28 years later, in a residential facility, with badly damaged speech and motor control, seizures, and psychological problems - borderline psychoses, really - more intense than before.  So the wedding was memorable.

My mother had taken a liking to this middle niece (she liked hard cases and abandoned children).  They stayed in touch and corresponded as best the niece could.  So it seemed only natural that, out of the blue in 2001, the niece would try to give my mother a gift - a significant amount of money (five figures, though I forget exactly how much).  The point of the gift, the niece said, was to help her qualify for Medicaid.

At the time I didn't know a thing about Medicaid asset transfers and spenddown arrangements.  And maybe the plan was completely legal and aboveboard.  But it seemed strange.  You'd think that if an asset transfer was planned, Uncle F or Aunt R would have been in touch and explained the logic and the circumstances.  Of course, no one was speaking to anyone else (there was an immediate cause that I can't remember but basically it was 1955 still doing its thing) so explanations weren't a realistic possibility.  My mother got the letter and the check and told me about it, and I told her to deposit it.  I was distracted by work and didn't think that the transfer might be problematic, and there was the part of me that wanted to see her happy and another part that just hoped you could avoid the old conflicts if you didn't look them in the eye.

My mother deposited the check, and then my father found out about it.  This was on a Friday night when I was flying back to New York from a new business presentation, and getting ready to go on vacation.  I remember this because I got back to my apartment, dropped my bags, went out to dinner, and came home to nine messages, all from my father, on the answering machine.  They were all strangled variations on "call me." 

I did.  The next several days are a blur.  I remember calling him on my cellphone from an airport newsstand Saturday morning, and calling him again from the airport in Ft. Lauderdale, and a couple of days later waiting for the cruise ship to angle close enough to the shore of Puerto Rico that I could get a cell phone signal and talk to a lawyer.  My wife, who's a lawyer herself, wisely refrained from giving advice but tried occasionally to get on the phone and calm my father down, which was made difficult by the fact that he was shouting words like "malice aforethought" and other pulp fiction quasi-legalisms, and generally not listening.

The shouting was spectacular, even by his standards, which is saying something.  During the airport call my mother tried to interject something.  "You shut up!" my father said to her.  He'd been emotionally violent before but never that crude.  At another point he called his niece "deranged," which set off my mother's sense of injustice and inspired her to protect the weak and defenseless - fiercely, of course.

This went on for days.  I was able to get them some interim advice and then, once we got back from vacation, I succeeded in tracking down a lawyer willing to take on the matter.  He felt that the legalities were unclear.  Maybe the transfer met Medicaid standards.  But since the approach had been, let's just say, nonstandard, and since there was F's long-past history, the lawyer thought there was some chance the transfer wasn't legit, and that it ought to be reversed out.  He drafted language for us to use, and I gave my father some letters to send.  A few weeks went by, and there was no response.  My parents were ready to go nuclear again, so this time I stepped in and took over all communications and the full management of the case.  I left a voicemail for Uncle F, who called me back a couple of days later.  "I'm glad you got on top of this," he said.  "I've been trying to track down her therapist.  I don't know why that woman came up with an idea like this..."  It was odd.  There was a touch of too-much-information.  I hadn't said anything about a therapist - so why was F introducing a new character to the drama?  Scapegoat?  Red herring?  There was always something too clever about him...  But clearly, F wanted to get out from under and so he agreed to accept a reverse payment, and that was that.  I think it was the last time he and I spoke.

Now Uncle F is dead, and of course that's why the story comes to mind.  But it comes with this one additional question: was it the huge fight, and not the word-finding problems, that was the first sign of my father's Alzheimer's?  I have no idea.  The way to think about it is to try to determine whether the fight represented a behavioral change or not.  Did it?  On the one hand, even given the family's history of violence, I'd never seen my father that far gone.  On the other hand, given the family history and also the circumstances, I can't say that his reaction really represents a change from what had gone before.  True, when he said to my mother, "You shut up!," that was a new extreme.  But was it a difference in kind, or just in degree?  Clearly, there was an enormous amount of stuff piled into this fight - 46 years of unresolved conflicts.   And the circumstances, given possible legal and financial consequences (would there be investigations?  would there be penalties?) were particularly frightening for him.  So he lashed out and he kept lashing out.  He felt bad about it afterwards - told me so, just after my mother died.  Any chance that Alzheimer's was behind it?  They tell you to look for personality changes, new behavior patterns, sudden anger.  Dementia?

My take is, maybe, but probably not.  At least, I can't conclude from the evidence that Alzheimer's as opposed to routine family karma was in play.  Maybe it was dementia but more likely it was just another fight - a massive one, but just one in a series.  So I'll stick with June 2002 and my conversation with my mother and the "SBC/SUV" dream as the first sign of what he was about to go through. 

You see how hard this is, though.  They tell you to look for behavioral changes but when can you say for certain that behavior has actually changed?  The guidelines are nice and can be useful in retrospect but practically speaking, early symptoms are almost impossible to recognize and interpret.  Was he different then, or not?  I didn't notice a change then - just the same old severity - and today, years later, knowing what I know now, I still don't know what the answer is.

I do know one thing - you look back at the whole godawful history from the vantage point of my mother's cancer and F's cancer and my father's Alzheimer's and, as I've mentioned before, you just want to go back in time and shake them and slap them around.  Don't you people have any idea what's going to happen to you?  You're wasting your lives and your energy on all this bloodshed and in the end you're going to be wrecked and in pain and completely alone.  Don't you get it?

No, they don't get it.  And you can slap them all you want and they won't get it.  For that matter I can slap myself and I won't get it.  I've had more than my fair share of bloodshed in my own life, and knowing what I know about my parents doesn't seem to change that.  The conflict always seems important at the time.  The issues seem urgent, and anger makes you strong, and it's a way of engaging with the world, and some things just need to be settled.  And maybe there's something to that.  You can't walk away from important things and live your whole life as though you were at the brink of death.  Can you?  Or is it worth letting the possibility of Alzheimer's and other ultimate consequences flash through your mind and then maybe you put the weapon down...

I'll say this - I'm sorry to have lost all of them, and I'm sorry that now there's no possibility of reconciling anything, but it's also a huge relief to finally be able to ring the curtain down on 1955.  It took a while, but finally the people who fought there can't fight anymore.  So that's it.  Sometime in 2010, 1955 stopped being the center of gravity and went back to being just another year.  A shame it took cancer and Alzheimer's for us to get here but we're here now.

Get out the noisemakers.  Auld lang syne and all that.  Say farewell.

A little more than a year after the fight - and just after my father's speech problems showed up - my mother's cancer broke loose and she went into her final crash.  While it was happening, my father showed some behaviors that also might have been Alzheimer's but maybe not.  More on that next time.

How It Started, or, Dreaming Alzheimer's

I dream about my father often.  An acquaintance who's supposed to know tells me this is a good thing - most people don't dream about a deceased parent so soon after the death.  She tells me it's a sign of integration or wholeness or being well knit or whatever the high-value outcome is supposed to be.  I wouldn't know - I just process the stuff.

The dreams come in three main flavors.  My father is very young - the way he would have been when I was a small child.  He's whole and energetic and maybe a bit rash.  Or he's on the cusp of Alzheimer's and the problems are just beginning to show.  Or he's all the way in and he's wretched and decrepit, the way he often seemed on this blog.  In one of the latter type, he literally clung to my back, like Anchises.  Doesn't take a genius to figure that one out.

In some of the dreams I'm alone with him.  In others my mother is there and able to help out, or not, depending.  I always have mixed feelings about her being there - I'm grateful for the extra pair of hands but I worry about the impact on her, as I would have if she'd survived to see what happened.

Here's a typical dream of the second flavor.  We're in his apartment (my childhood home), which is somehow also my current apartment.  My cats are there, and one of them has taken to urinating outside the litterbox (as happened last summer, when I was splitting my time between the cat's MRSA infection and the nursing home search).  I check the litterboxes, which my father has been taking care of (as he did with his own cats - it was one of the last household responsibilities he was able to maintain).  I find that he's put just a small amount of litter into each litterbox, then filled them with water.  No wonder the cats don't want to use them.  Why would he do that?  Looks like he's beginning to show signs of Alzheimer's.  I'd better get him checked.  It's going to be a lot of work to deal with this.

As in fact it was. 

Why the dreams?  Beyond the obvious answer (I'm working through the experience over and over and over and over), I don't know.  I don't know what role the dreams are playing - there's no real sense of progress, and they seem like churn.  Maybe it takes longer for them to thrash themselves out.  I suppose I'll find out eventually, since they don't seem to be going anywhere and neither do I.

I'm reminded as I think about the dreams that one of my first recorded observations about my father's Alzheimer's came in the form of a note about a dream.  For years I've kept running notes on things - they're sort of like this blog, only less presentational, and therefore better.  The note in question was written in the early summer of 2002.

I seem to recall - and the evidence bears this out - that he'd been showing symptoms for a while by that point.  I think the earliest problems cropped up sometime in 2001, or maybe even earlier than that.  I can't be exactly sure - I was caught up in other concerns at the time and didn't bother writing them down.  But by the middle of 2002 his issues had been going on long enough that they'd worked their way into my notebooks and into the dream material too.

The first symptoms were speech problems.  At first he'd forget or make mistakes about proper names.  After a few months the problem extended to nouns in general.  At some point I must have done some research because I taught myself the words anomia and aphasia.  A couple of years later I'd tell people (and sometimes I'd tell myself) that he had anomia or aphasia, and that this indicated some kind of cognitive problem, but it clearly wasn't Alzheimer's.  I believed that at the time.  Once or twice I told doctors about anomia or aphasia and they got annoyed because I wasn't a doctor and wasn't supposed to know words like that.

But I'm getting ahead of myself.  In the summer of 2002 the problem was just present enough, and just persistent enough, that I was beginning to think about it consistently.  You can tell because it suddenly appears in my notes, and one of the notes is about a dream.

The dream is pretty classic stuff.  At the time I was working as an executive in a big communications firm.  The firm was run by a chairman, who was known to his inner circle as "The Chairman."  There was an aura of fear about him.  Sometimes I wonder if that wasn't just me projecting, but I don't think so, because when he visited the office or joined in a presentation you'd see ordinarily confident senior people suddenly get radically anxious and say things like, "We can't have a meeting without a PowerPoint - The Chairman doesn't like it that way!"  One day a very senior person had a near-meltdown on the intercom - "Jane Doe, call 5555!...  Jane Doe, call 5555!...  Jane Doe, call 5555 NOW!"  The Chairman needed a Diet Coke and it wasn't coming fast enough.  My own take was that that was an odd way to run a communications firm - with a fear culture at the center.  You'd think you'd do better if people were relaxed and could actually exchange ideas.  But things were the way they were.

In the dream I was in my parents' apartment, which was also the offices of the communications firm.  There was a reception, and my parents were going to meet The Chairman.  An anxiety dream?  Why, yes.  I think it was.

There was something I needed to check - a newspaper article that was appearing online, or somesuch.  So I had to leave my parents and The Chairman alone with each other.  Needless to say, I wasn't at ease.  But I came back to find them all chatting amiably with each other.  Side note to self - maybe the fear thing was my own projection after all.

There was only one problem.  My father kept wanting to refer to the firm's biggest client, a communications firm that was known at the time as SBC.  It had once been Southwest Bell, and today, after a string of mergers and acquisitions, it does business as AT&T.

My father kept referring to it as "SUV."

I tried correcting him and telling him about the history of the company, but he persisted.  The Chairman seemed to understand.  He wasn't bothered and went on with what seemed to be a very genial conversation.

I go on at length about it because - in spite of the fact that this is a dream narrative - it's also the best single record I have of how his symptoms appeared to me at the time.  It didn't seem to be a normal kind of forgetfulness.  He wasn't word-searching.  There was no hesitation.  He found a similar word - a homonym - and dropped it into the conversation without noticing that anything had happened.

I mention that not to get anyone anxious - I do similar things myself these days, and by themselves, signals like this aren't necessarily signs of Alzheimer's.  It's just that I"m talking about his specific case, and trying to be accurate.  The noun substitutions represented a break in the pattern and, as it turned out, they were the first sign that everything wasn't quite right.   

In my notebook - the entry is for Thursday, June 27, 2002 - I wrote, "Apart from a couple of obvious things (my father's new problem with proper names), don't know what it means.  Will have to see what comes next." 

As, in fact, I did.

The note, now that I look at it again, suggests that maybe the timeline I laid out earlier in this entry was too aggressive.  I wasn't yet referring to problems with nouns, only to problems with names.  So it may have been a little later that the problem got more entrenched and he started referring to his toothbrush as "the whatchamacallit."

Another point that needs correcting - recently, when I've thought about the dream, I've remembered it - and my note about it - as the first record of my father's symptoms.  But that's not the case.  A little over three weeks earlier - on June 5 - my notebook entry records a conversation with my mother, and includes the following: "I asked about my father's forgetting nouns, and suggested she bring it up with [Dr. R] and let him decide what if anything to do about it, and she said she would."  So there's an earlier description (a broader one, too - it refers to nouns, not just proper names). 

The two notes together show that at this point, eight years ago almost exactly, I was beginning to get quite concerned.  The fact that I was willing to bring this up with my mother tells you that.  She'd had a difficult winter (the 20th year of her breast cancer) and that summer, she was just beginning to show signs of the final breakout that would lead to her death the following January.  Under those circumstances I didn't like adding to her list of problems - unless I really felt I had to.  Apparently I did.  And then there's the anxiety dream just a couple of weeks later.

So there we were.  And there we are.  The record is ending in dreams and it started with dreams.  It also started with nagging concerns, of course, and with a sense that the problem might have been innocuous or maybe not and you didn't know what to do about it.  That sense - the nagging questions (am I overreacting?  Am I underreacting?) - played out over and over again during the whole nearly-eight-year arc until he died.

It's possible the notebooks include some other, earlier fragment of a symptom.  I haven't found it yet but I'll try. 

There's certainly enough detail to come after, and I'll be mining that soon.

This Just In: The Elderly Hallucinate in Hospitals, Says New York Times

Opened my New York Times this morning and was treated to the breaking news - in a below-the-fold front-page story, no less - that the elderly hallucinate in hospitals.

Uh, right.  Stop press.  This changes everything.

Actually, to be fair, the Times isn't just reporting about hospital hallucinations - it's also reporting that the medical profession is finally taking them seriously.  Which if true, is in fact news, and good news, too.

As to the remarkable fact of the hallucinations themselves - sorry, Times, but every Alzheimer's caregiver has known about them for years. 

In fact, my father had major hallucinations every time he was admitted to the hospital. 

In the fall of 2003, on the first major hospitalization of his Alzheimer's - also his first major hospitalization since his childhood - he spent a full afternoon time-traveling.  First he was in the Coast Guard (he'd respond to everything I said with "Aye aye, Sir!")  Then he was a reporter (he looked at me and asked, "Are you guys also working press?")  There was a New York Giants game on television and he managed to conflate it with something else he'd been thinking and turned it into an enormous litigation in which the Giants were suing Columbia University or Columbia was suing the Giants or they were suing each other.  Then he noticed the 74 year-old man in the next bed and started giving him advice about how to start a dental career.  We found out later that the 74 year-old man was in fact planning a dental career, so that, at least, was a shared hallucination.

By 2006 things had gotten darker.  My father was in the hospital during the Christmas-New Year's week.  One morning my wife and I walked into his room and found him flat-out raving - during the night, he said, he'd been kidnapped multiple times, men had stormed into his room and he'd fought them and they'd fought each other and there was a riot, an absolute riot in his room, and then they took him across the street and held him there, and there was a shadowy figure called The Menace that was after him...

This went on for hours, at a high, energetic pitch.  There were also grandiose fantasies about how my business controlled the world and was going to make everything right.  My wife and I looked at each other, then went straight to the nursing station and tried to report to anyone who'd listen that he'd sailed off the deep end and we'd never seen him that way before.

The reaction was an ongoing stream of condescending smiles - oh, yes, of course, never been like that, sure, we know, the families always say that.  We pressed the point because he was supposed to be discharged that afternoon, and we had no idea if it was safe to take him home.  But all we got was the patronizing stonewall - until about 4 p.m., when a couple of the more arrogant house staff physicians, suddenly looking sheepish, took us aside and the first one said, "Uh, about those hallucinations... we just had a look at his chart..."

It seems that when he'd gotten agitated overnight, somebody on the nursing staff had dosed him up with Ativan.  As I could have told them if anybody had asked, my father tended to have what are called paradoxical reactions to anti-anxiety and antipsychotic meds - meaning that they'd make him anxious and psychotic.  That's what happened here.  The hospital did its usual thing ("stuff him with meds, put him down!")  We got him home that afternoon but it took another three days for the hallucinations to clear.  We finally had to tell him that he'd hallucinated the kidnapping - it was so vivid that he refused to believe it wasn't real.  But once we gave him the background, he got bemused in a mostly happy way - "Really?  I imagined all that?  But I remember it all so clearly..."

What I remember, mainly, other than the sense of alarm, is being patronized by the doctors.  "Oh, yes, silly mortal, the elderly often do this.  We'll humor you when you tell us his behavior is unusual, but we know better because we, by definition, know better.  That's what makes us doctors."  Many times, on many hospital visits, we were treated to the technical term for his hallucinations - "sundowning," so called because the hallucinations happen mostly in the evening.  "Oh, yes," Dr. R would tell us, "he's been sundowning."  He said it with an air of, "we have a word for that, therefore we know all about it."  He might as easily have said, in his expert voice, "Oh, yes, he's got a serious case of Romaine lettuce." Syndrome identified, case closed.  No one ever did anything about the sundowning - followed up on it or asked if it happened at home, too (it usually didn't) or thought critically about the hospital environment to see if it could be minimized.  No, we have a word for it, and now that we've registered our expertise, we'll move on.

So it's a Very Good Thing if, as the Times suggests, the medical profession (or at least some parts of it) now recognizes that hospital hallucinations are common, they're harmful, and it might be a nice idea to change the routines in order to mitigate them a bit.  I'm all for it.  In fact, if anybody's interested, I'll be happy to share my notes.

If you're taking an elderly person to the hospital, you might want to clip the article and carry it with you to show the medical professionals who Know Everything and Will Tell You So Themselves.  Couldn't hurt.  Could help.  Could free you and your loved one from the burden of thousands of tiny creatures, some on horseback, when they attack.

 

The First Father's Day of the Post-Father Era

Today is the first Father's Day since my father died and I'm feeling... well, the truth is that I'm feeling nothing at all, except a sense of relief that I don't have to deal with him in the setting of the holiday.  I had to remind myself that it was Father's Day and when I remembered, it seemed like a day off.  I feel like I'm out from under.  Maybe he is, too.  It's a sort of liberation, a small one, but a liberation nevertheless.

Sorry if this sounds harsh.  Emotions around holidays are always complicated, and in Alzheimer's, there's the added complication that your sentiments get broken up and scattered in parts along the timeline.  My grief over Father's Days - and the whole contrast game ("he used to be like this, but now he's like this") happened years ago.  Here's where we were in 2008, and here's where we were in 2009.  And of course there's a long string of emotions and detachments over the several years before that.  You can trace his decline in the gifts I gave him.  As I've noted before, when he was whole, there were always books, mostly popular history (the new Nathan Philbrick book about Custer would have been perfect).  Two years ago I had to shift to picture books, because he couldn't cope with text.  Last year I gave up on books altogether.  This year, if he'd survived the winter, I would have bought him some sort of clothing - or maybe not even that, now that I think about it.  They were going to put him into jumpsuits to keep him from exposing himself to the other residents.  So - slippers, maybe?  Or something for the bed?  And a card he wouldn't have understood.  Actually, he wouldn't have understood what any of the celebration was about.  By this point he might not have recognized me at all.  Better for him to be out of it.  The first Father's Day without him?  Nah, that happened a long time ago.

Of course, he gets some of the credit for my sense of detachment.  Back in the day, we never took Father's Day all that seriously.  He liked to use it - this was one of his ongoing riffs - as an opportunity to introduce me to the concept of public relations.  He loved talking about how Father's Day had been created by the cigar industry as an opportunity to sell cigars - the idea being that the manufacturers envied what the florists had been able to do with Mother's Day and came up with a peak sales day of their own.  I'm not sure he was right about the cigar industry - men's clothing manufacturers may have played a bigger part.   But clearly commercial promotions helped put the day on the map.  The point for him is that he never wanted the day to be awash in sentiment, so I'm not about to start now.  In practice we often moved Father's Day around the calendar - for several years I spent the day traveling to one meeting or another, and so we'd celebrate as much as two weeks late.  The relationship counted more than the day, which for me is still the case.

Though on the other hand... in the 2008 entry, I mentioned the wristwatch I'd bought him.  It was a cheap, sturdy Timex Expedition with an olive drab canvas strap.  As I wrote at the time, he couldn't read his digital watch anymore so I got him one with an analog face.  He liked it - that was when he told me that he could finally stop asking people the time and "I can go back to being an adult now."  He was able to cope with the analog display for a few more months.  Even after he couldn't, he kept wearing it.  He'd tell visitors about how I'd bought it for him, or his father had bought it for him, or his nonexistent brother had bought it for him, or I'd bought it for him in the role of his father or his nonexistent brother or his adopted son or the good friend he'd met during the war.  Sometimes he'd try to tell time with it, which usually involved his pointing to some part of his forearm, maybe or maybe not in proximity to the watch, and saying something mostly incomprehensible.  He wore it all the way to the nursing home, and he was wearing it when he died.  The funeral home gave it back to me.  I thought of it a moment ago and pulled it out from under a pile of papers and now it's sitting on my desk, ticking away (he took a licking, it kept on ticking...)  I'll keep it there for a while, probably until the battery gives out, then I'll put it next to his father's pocket watch, which I also own. 

In other words, I'm detached and not detached, and Father's Day is meaningless except that it made me think about the watch, which had slipped my mind, and now I seem to be sitting here reflecting about it.

A sense of detachment is a valuable thing but apparently it's not the only sentiment on the boards.  Relationships stay alive and there's always something new to work with.

That being the case, I'll have to keep sifting the debris.

If you've just had an Alzheimer's Father's Day, well, I'm sorry.  And I'm not going to sit here and tell you that it's been better than it is or full of hidden blessings because it's not - it's every bit as bad as it seems.  But it might give you something worthwhile later, even if you don't fully understand what that is.

I'll let you know what mine was if I ever figure it out.

Digging Out

So.  More than four months since he died.  More than two months since my last entry.

I hadn't meant to go silent for that length of time.  But then, I hadn't expected anything that's happened since all this started.  Why should the postmortem be any different?

Thankfully nothing dramatic to report today.  After my Facebook adventure, I tried to mend my fences. We'll see in the long run if I was effective and if the effort was worth it (political postings died down for a while but now they're back, and I'm trying not to react and instead let them come and go - my Facebook practice).  Then I sank back into exhaustion.  Everything seems like a massive effort - getting work done, getting errands done, moving from one room to another.

Somehow in spite of that I've been productive.  There's been work, which is no small thing in the current environment, and I've been able to concentrate on it and meet deadlines and even create a few new things.  So that should be reason for optimism. 

I've also been getting through the work to do with my father, which continues, of course.  No one actually dies, not anymore.  What happens instead is that you unravel slowly in a continual stream of e-mails and phone calls and attorney's letters.  So there's been the ongoing negotiation with the nursing home about the Medicare pharma bill (still not settled - they have to write a contract with the insurance provider, which they didn't have before, and then persuade the insurance provider that, yes, coverage ended in March but the charges are from January so they're valid)...  And there's been the asset transfer at the brokerage (lots of forms, additional effort because the remaining holdings had to be divided equally between me and my wife, the result of a clause in the will that I'd never paid attention to before).  Then there was a last big asset sale to cover the funeral costs and also give a gift to E, his longtime aide.  After all the conflicts and all my efforts to fire her, then bring her back, then lay her off, in the end there's a check that I wish could be bigger.  She stood by him when most other people didn't and for all the difficulties, I think she cared.  I talked with her a couple of weeks ago and she brought me up to speed on the other jobs that she and the rest of the aides are sharing - they seems to have created an informal network, which I guess is something else my father left behind.  She promised to stay in touch but I don't know if she will.

Oddly, the thing that moved me the most was the afternoon I spent canceling his credit cards.  Maybe a sad comment about the society we live in but that, more than anything else, more than the funeral and the gravesite, felt like mortality.  Like at a funeral, the guests brought varying degrees of ease and sophistication to the table.  Chase and American Express took my word for it that he'd died and canceled over the phone, Citibank insisted on a death certificate and a letter of administration, and Discover had already canceled him.  They said they monitor the public records - they said it with a faint air of "what took you so long?" 

Similarly, there was the processing of the tax refunds - New York State wrote him a check, which I'm able to deposit in the joint account; the IRS noticed that he was dead and balked, unless I could provide proof that I was the administrator of the estate, which of course I did.  Their caution seems reasonable - I'm actually glad they checked before flinging tax revenues back out into the world.

About the credit cards... part of the sense of finality comes from the fact that there's a long story behind them.  A long time ago, my father ran them up - in spite of his fiscal conservatism - because it was the only way to juggle the cost of my mother's breast cancer meds.  This was in the days before Medicare Part D and even if there'd been that, her first illness predated her Medicare eligibility by seven years.  After she died, in the early 2000's, he began paying them down.  At first he made small payments.  Then he discovered the wonders of those courtesy checks they send you all the time, and started checks from one card to pay off another.  Then he tried to use the checks from one card to pay off the same card, which of course the credit card companies didn't want to go along with.  His credit card behavior was one of the early signs - not the earliest, but early - that something was going wrong with him.  It was at around that time that I started to help him with some of the household tasks, like check-writing.  Then I took over the process, and shortly after that, I used my power of attorney for the first time to sell an annuity and pay off all the outstanding balances.  So the cancellation was the end of a long journey and not just mopping up.  I thought about that for a short while - then I went through my call list and got rid of them all.

A while ago I promised you a few stories like that, and that is in fact where we're going next.  There are a couple of tracks to pursue.  First, there's recent history.  I started this blog in the fall of 2007, and didn't really pick it up in earnest 'til the following winter.  By then he was in the late-middle stages of the disease, and most of what I've written is the end of the story.  There are at least five years of Alzheimer's to cover before the first entry.  I'll get to that, because it might do someone some good who's only partway along the path.  Then, there's early history.  I haven't had the heart yet to dig into the family papers, but there here - all the history back to the 50's, and to a lesser extent the Depression and the war.  I'm not sure if what's in there will help me get at who he was - or if there's even such a thing as "who he was" (as opposed to the versions of him I could invent to satisfy my need for something concrete and definitive).  But it's worth a shot.  So I'll be looking at that, too.

And there's the present, which continues.  There's the paperwork, which won't be done for at least another year (he lived six weeks into 2010, which means I'll have to file his taxes next April).  There's my meeting with the nice hospice people who want to counsel me.  I haven't arranged it yet, but I'm about to.  And there are the dreams.  He appears in them often, sometimes with Alzheimer's, sometimes without.

Actually, now that I think of it, the first written reference I have to his Alzheimer's is a note about a dream.  That might be a decent place to start.

I'll pick up there next time.