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.
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