Oh my valve, it’s Alzheimer’s! Or, Sig’s Infernal Tour, Canto I

When your family is behaving badly, if you clutch your chest and cry “Oh, my heart! You people are killing me!” I imagine it might have a dramatic effect. Unfortunately, clutching your chest and exclaiming “Oh, my gall bladder!” doesn’t have quite the same impact.

Perhaps the best way to explain my absence (again) and what lies behind the above statement would be a simple time line. Which, me being me, will rapidly become complicated with asides and additions, specials of the day at Sig’s a la carte restaurant of madness. I have, in fact, bought a ledger-style daybook (with deceptively pretty pictures of birds in it) to record exactly WHEN everything happens, because as I get older I’m really tired of those perennial arguments about things like “Was it 2004 that Grandfather got lost on the way to Pittsburgh, or was that some other Christmas?” From now on, there will be a record.

Although it is hard, indeed, to know just how we strayed into the dark wood . . . so heavy were we, and so full of sleep, when first we stumbled from the narrow way . . . as Dante says.

August 16: My mother was hospitalized for extreme dehydration. So extreme it was life-threatening. She came out with a diagnosis of ulcerative colitis. She’d been having severe diarrhea for weeks but concealed it from all of us and pretended nothing was wrong. Why? Because she didn’t want scrutiny placed on the increasingly unworkable situation at home. My father has never been what you’d call normal, but the paranoia, rage attacks, and ritualistic constriction of activities had escalated dramatically, and the number of interactions that he could or would participate in had plummeted. As we (defined herein as me and my siblings) soon discovered when we rallied around to help in this crisis. It was clear that he couldn’t handle being home alone. I stayed for a week as my mother transitioned out of the hospital, to cook and shop for them, oversee my mother’s rather complicated medication routine  and provide general reassurance. (Besides the colitis, she’s on blood thinners for a clotting problem, has high blood pressure, and is rather deaf.) After I left, my sister the Duchess arranged visiting home care for four hours a day, and delivered frozen meals that the helpers could heat for them. My sister Queenie came by each day in the evening to make sure my mother ate the correct diet and to prepare my father’s supper for him.

September 4: This crisis led to appointments for my parents at the geriatric clinic, since we all agreed that the complexity of care had gone beyond the capacities of their current PCP. At my father’s first appointment, the doc said he had significant memory loss indicative of probable Alzheimer’s, and referred him for neuropsychiatric evaluation. He considered this nonsense and pretended to ignore it, since his memory was perfect in every way, perfect I tell you . . . what day is today? The doctor also told him he had cataracts and loss of feeling in his feet, and most definitely should never ever drive again. We were relieved to hear this, since we had long believed he was a menace to himself and others . . . but it came back to bite us in the ass repeatedly. Daddy never goes down without taking a few people with him.

Sample conversation: “They took my driver’s license away! That is RIDICULOUS. I did nothing wrong! I don’t care if I have a license or not. I shall simply get in the car and drive when I want to. I’m not going to have an accident–and so what if I do? Everyone has to die sometime.”

“Well, Daddy, it’s one thing if you want to risk your own life, but you ought not to risk hurting other people.”

(Enraged and clenching teeth and fists angrily) “Well, FINE–then I’ll make sure to crash into a concrete wall! Will that make you happy?”

Stir and repeat as needed.

Actually, of course, no one took his license away. The doctor handed him a sheet of paper on which was written “DO NOT DRIVE EVER AGAIN.” She said gravely, “Now I’m giving you this so you can remember what we talked about today.” This weirdly morphed in his mind to the Secretary of State having rescinded his license. Whatever–it was a piece of paper of some official nature. He also declared he’d never had cataracts–or if he had, they’d been removed years ago. (He has never had a cataract operation. It was my mother who had cataracts removed, not him.)

September 21: I return to Michigan (a ten-hour drive from here) for a council with siblings, and to go with my brother, Mr. Science, to my father’s 4-hour neuropsych evaluation, while Queenie is taking my mother to her revisit with the gastro doc. My father emerges ruffled and perturbed. “Crap! It’s all CRAP! These tests are ludicrous, unfair, meaningless. I could recite the alphabet backwards if I wanted to but why would I do anything so absurd. They are simply using me as a guinea pig for some kind of experiment, that’s the only possible explanation.” Later, in the interview portion, he is unable to specify what’s wrong with my mother, and says we came to Michigan in 1949. Actually, it was 1954. He does remember the President’s name, and the name of the Governor of Michigan, and that he doesn’t like either one of them–but declines to explain why. He boasts that he reads three newspapers daily (the New York Times, the Wall Street Journal, and the Frankfurter Allgemeine Zeitung) but can’t cite any articles that have caught his attention recently. In the presence of the (male) doctor, he is charming and crafty. But not crafty enough to conceal the increasing pathos of his disabilities. My little brother breaks down and weeps while Daddy is in the bathroom. I feel like crying too, but I taught myself not to when I was five or so, and I’m still pretty good at making pain disappear so I can remain vigilant and ready for action at all times. Mr. Science has to leave immediately to get back to Washington, so no further action is conducted, and my parents continue to pretend all is normal, while flailing and creating ever-widening circles of chaos.

During the ensuing weeks, each sib reacts in a different way, deploying the various strategies that have enabled us to cope with our dysfunctional childhoods. These strategies clash when brought together, and conflict breaks out among us. I push doggedly for another council, this time overseen by a social worker. My normal role is to interpret, mediate, and buffer, ensuring that everyone stays connected and nobody gets hurt. Or attempting this feat–since clearly it is insanely grandiose to imagine that I could actually accomplish it. I explain repeatedly to my siblings that trying to meet with all of them, without a professional facilitator, when they’re not getting along with each other, is my worst nightmare, but they don’t seem to get it. I succeed in contacting the social worker from the geriatric clinic and arranging a meeting, but along the way, the Duchess denounces me as an enabler, a person lacking moral integrity, and a disappointment to her, and stops speaking to me for awhile. Meanwhile Mr. Science and Queenie have a phone conversation in which each accuses the other of hanging up on him/her, so they are non-speaks as well. Both of them call me, however, to give me their version of the incident and implicitly solicit my support. Queenie and the Duchess persistently try to get me to take sides as well, though each would be extremely angry at such a description of her behavior, so I can only hope they’re not reading this.

October 12: I return to Michigan and once again we gather in my hotel room, this time with social worker. She turns out to be more of a bureaucrat than a therapist. Nonetheless, the discussion goes all right as long as she’s there. Although Queenie takes extreme exception to what I thought was a rather sweet little mission statement about how we’re all going to stay family no matter what, expressed by the Duchess (after her reconciliation with me) and written out by me, because I thought everyone liked the idea. Nuh uh. Queenie did not, and pushed the sweet little card away from her as if it were a piece of shit. So we started off sourly. It is decided that yes, my parents do need some form of 24-hour care ASAP, and that it would be best to tell my mother of my father’s diagnosis ASAP as well, so she’ll have time to process the news before my father gets it at his follow-up appointment. We agree to go over to their house and do this as a group.

The social worker leaves, and all hell promptly breaks loose. This day goes down in my personal history, because I have never seen so much dysfunctional communication in one room before. And believe me, I’ve seen plenty. My mouth is literally hanging open in speechless astonishment as accusation, misrepresentation, hurt feelings and total misunderstanding run amok. If you ever wanted to see the opposite of the famous Prayer of St. Francis in action, that would have been it. I steadfastly refuse to facilitate or interpret ANYTHING, and confusion reigns. At one point, Queenie angrily turns to me and demands that I tell the others that they’re not understanding her. I say “Whatever I might say would only be me talking. What’s important now is for them to hear you, and you’re going to have to work that out for yourselves.” Result: everyone mad at Sig for a change. As usual, Mr. Science’s schedule presses, so we decide to stop fighting temporarily and decamp to my parents’ house to do the deed.

On arrival, the Duchess decoys my father so the rest of us can sit down with my mother and impart the dire news gently and with solidarity. Instead, Queenie and Mr. Science huddle in the kitchen where they continue fighting. Mr. Science thinks he’s apologizing, but what he actually says is “I don’t apologize for anything I said, because I was totally right about everything and it needed saying. But I’m sorry if you thought I was lecturing you.” This has the same effect that most self-justifying apologies have–stabby, stabby, rub salt in wound. Victim not grateful. Realizing there is no end to this and my father will soon return to muddy the waters, I take it upon myself to sit down, take my mother’s hand, and give her the news. Yes, I get to make my mother cry. Just me. No one else. Way to back me up, guys. K thx bai.

On this and subsequent occasions, my mother agrees with us that it would be best to let the doctor give my father the news. I stay an extra day to help my parents calm down and give my sisters a break. Before leaving, I call Queenie to see if she wants to visit. We’ve always hung out, and this has always been important to her, so I don’t want her to feel slighted. She replies “No! I’m BUSY.” She lets me know she is furious with me, she hates my stupid card, and she doesn’t want to be bothered with me right now. And then yells at me on the phone for forty-five minutes. Which I let her do because I figure if she vents at me, she’ll be calmed down when she talks to the others. And they’re less forgiving than I am.

This is the little sister for whom, among other things, I flew halfway around the world when she was broke, dumped by her abusive husband in a strange land, and in failing health because she was too terrified to get needed surgery while being the sole support of her two daughters. So it kind of bites that I can so rapidly become The Enemy in her eyes. But it is ever thus. I get a lot of the crap dumped on me that would rightfully belong on my parents, because it’s safe to dump on me. They know I’ll always love them no matter what. None of us is crazy enough to believe that’s true of my parents. As will become apparent at the next stop in our timeline.

It’s okay that she banned me from her house, though, because instead, my son the Philosopher takes me out for a restorative bowl of udon. We talk about science fiction, books, the game he’s designing. God bless the Philosopher–he is, as his grandfather once proclaimed when the P was about six, “a saint.” My children are a source of great comfort to me right now, because they demonstrate daily that a family can actually be a haven rather than a crucible. The Philosopher says “Well, I think you’ve raised us so we wouldn’t act this way.” I carry with me like a talisman the card he gave me when all this started and he could see I was distressed. It says simply “Mom: I love you, and everything will be all right.” He visits his grandparents every Monday, takes out their trash for Tuesday’s pickup, carries things that need carrying, fixes their computer, and eats leftovers. This gives them great happiness. I worry that he is subjecting himself to their abusive behavior, but he says–philosophically–”You know, Mom, I don’t have the same issues with them that you do.” I let my kids and my parents have their own relationships, whatever they may be. I’m not ever going to make them take sides, either way.

October 14: I return home. Ten-hour drive with Dante and Christopher Buckley for company.

October 18: At midnight, the phone rings. It’s my parents’ number, so I answer, immediately afraid there’s been some disaster, since they normally go to bed at 8 pm. “Hello. This is [FULL NAME OF THE OLD GERMAN]. In other words, “not your father, you miserable traitor”–an implication I comprehend immediately. My father, with every appearance of lucidity, tells me he is being persecuted and harassed by us, and if we don’t stop immediately, there will be dire consequences. “I don’t want you coming to this house again. If you come here again, I will hurt you.” Incredulous, I ask him if he’s threatening me, and he replies “Yes. I am threatening you.” I ask him if he’s going to hurt my brother. “Yes, I will hurt him.” I ask if he’s going to hurt Queenie–after all, she’s the one who fixes their supper for them. He hesitates somewhat and doesn’t come down on either side about that. He says he won’t hurt the visiting help, because they work for HIM. (Never mind that he originally opposed hiring them and gave us as much crap as possible about it.) I ask if he’s going to hurt my mother, and he replies, “Of course not! I love her!” But not me or my brother, apparently.

He alternates between threatening to hurt me and pleading for understanding of his situation, which he characterizes as “being a prisoner” and “living in a nightmare.” It’s all our fault, apparently. Finally it comes out–”And I DO NOT HAVE ALZHEIMER’S.” He says that I am “leaving him no alternative” and that he will kill himself if I don’t make everyone stop saying that. I tell him he needs to talk to the doctor about it, that I’m not the expert. He finally gives up the phone, saying that no one is listening–although by this time I’ve listened for an hour or more. I ask to speak to my mother, and she takes over the phone while my father continues to rant and threaten in the background.

I tell her that if this goes on, she needs to call 911. She doesn’t seem to see the point of this. Then I ask her what happened. Apparently my father has been very agitated all day over his wish to drive and his conviction that people are unfairly trying to control him. Finally, late at night, she cracked and told him he couldn’t drive because he had Alzheimer’s. And I’m sure that the way she actually put it was this: “The CHILDREN are all saying you have Alzheimer’s. Sig is the one who told me so. SHE said it. Not me.” Way to throw us under the bus. But she’s always sold us out in the face of his rage. When I express surprise that she did this, after agreeing that it was not a good idea, she begins to weep and incipient hysteria threatens, so I back off. What’s done is done, I tell her. The important thing is to make sure you are safe, and Daddy is safe. If he keeps talking about harming himself, you must call 911. She says she will–though her agreement is clearly worth as much as ever, that is, nothing to speak of. By this time we’re creeping into the wee hours and they’ve been sitting downstairs in their nighties railing for a couple of hours, so I figure they’ve probably achieved catharsis for now, and I suggest they go back to bed. I go downstairs and watch mindless TV till dawn, at which point I e-mail my sibs to warn them. I don’t want anyone to walk into this volatile situation unaware, and possibly get hurt. One thing martial arts has taught me is that no one is harmless if they take you by surprise. And my sisters and I have had nightmares for years about my father wanting to kill us, already.

It seemed I had to tell them. But the information merely unleashes another round of recrimination, this time with my parents as full participants. When the Duchess demands an explanation, they denounce her, too. In the aftermath, the Duchess stops visiting their house–a sensible response to being threatened–leaving Queenie as their sole caretaker. Queenie realizes that my mother is not merely the innocent victim, but also an agitator who helps drive my father into panic states by her refusal to accept his condition. Queenie, too, distances herself from the parents and refuses to discuss the situation with my mother. My mother responds to the crisis with quixotic magnificence, as she finally masters the intricacies of e-mail for the sole purpose of sending out disinformation and more of those ever-popular self-justifying pseudo-apologies.

She has the audacity to inform me in our next phone conversation that “your father wants me to tell you that he never said he would hurt anybody, the way the Duchess is saying he did!” She claims he never said any such thing. When I say “Please do not try to smooth things over by telling me this never happened, when I know that it did, because I was there,” she substitutes a claim that she never heard him say it. My father disclaims all knowledge of his own actions, declaims tremulously that he would never have said such a thing when he’d carried me in his arms when I was a child. I’m more sickened by this than I was by their anger. It disgusts me that our relationship, in their eyes, is a choice between threat and placation. But it’s pointless to argue, because “I forgot” is an unbeatable trump card. I shrug it off and move on, assuring them I will be there for them as I always have been. Irrational rage is a symptom of dementia, even though it has also been SOP for my father throughout his life. It’s not going to change now, either way. My sibs consider this attitude to be evidence of my moral turpitude. If I really had integrity, I would continue to hold my parents’ feet to the fire and demand a real apology. I shrug that off, too. Sooner or later they also will move on.

My father reverts to pathos over the next few days. He says, each night, that he is afraid he did something to offend me, and expresses gratitude for my forgiveness, although he can’t remember what he needs to be forgiven for. My mother flatters me, though I know she’s really quite angry with me. I pretend not to notice their attempted manipulation, because I prefer not to get involved in it. This annoys them, because they WANT me to be upset. From their point of view, if I won’t let them upset me, that means I don’t care about them. A familiar dynamic. Stabby, stabby, ouch ouch.

October 22: I’m not sleeping much. I go to bed early, sleep for two hours, wake up, lie awake for an hour and a half, then go downstairs to wait for dawn. That’s when the chest pain begins. It’s a pain of a quality and severity I’ve never experienced. I stick it out for an hour and a half before calling the doctor. In courteous yet pressing terms, he urges me to get my dumb ass forthwith to the ER and stop being an idiot. So I wake up Metanous and ask for a ride.

I’m immediately popped into a bed and dosed first with nitroglycerin and then with morphine, after which the pain goes away nicely. And then the testing begins, and occupies several days because they can only give me one dose of Technicium99 per day, and there’s a nuclear stress test, two CT scans and an MRI to get through. Wheee–let’s hear it for good insurance! I’m on a heart monitor throughout. But it soon becomes apparent that it isn’t my heart–just my gall bladder. That’s a bit of an anti-climax, drama-wise. But it’s a good outcome, since my main goal at this point is to not let my parents kill me before they finally pop their own corks.

October 24: the docs agree with each other that my heart is fine, but my gall bladder must go. They offer me the option of simply staying in the hospital under observation for one more day and then being worked into the surgical schedule on Monday. Otherwise, I’d go home but then have to reschedule for an outpatient procedure. I actually consider leaving the hospital and postponing surgery so I can still drive back to Michigan on October 28 as I had planned, to attend my father’s follow-up appointment and visit several assisted-care facilities in the area. Yes, I actually consider this. Then it occurs to me that there are several people in my life who love me and would not wish me to put myself in harm’s way like that. And THEN it occurs to me that maybe I also value my own life and prefer not to risk a potential second attack, plus emergency surgery away from home. Gee . . . is that even possible? That I could decide my own well-being was important to me? Wow! Years of therapy–followed by actual results! Fancy that!

October 25: Very unhappy without my pants, I threaten to make a break for it several times, and I think the nurses are actually getting nervous, because one of them says “You won’t get far in that outfit!” True . . . but I could mug one of the aides and take his scrubs. As I pointed out above, no one is harmless if they take you by surprise. Not even a grandma with a heart monitor. While confined to my room, I field phone calls and e-mail from the social worker, who having had one good look at us, is eager to avoid meeting with us again, and from my sisters. And from my mother, who has sent me some comments that should be entered in the Olympic competition for Most Inappropriate Mom-Mail EVAR. She informs me that “your father has always looked to you for support and mothering.” Hooahhhh . . . . I can’t even get my head around that one. Yes, it is absolutely true, and in a way, it’s really nice to have it in writing. They are just that crazy. I didn’t make this stuff up. Now, if only she had followed it with “And, of course, I realize that is completely insane and I am so sorry I colluded in his awful behavior.” But noooo. She just wants me to go on doing it so she won’t have to. Bad enough if my father looked to his wife for mothering–that would at least be craziness of a more standard variety. But making me the parent of my parents is a step beyond. Imagine the state of mind of a woman who could say that to her own child without batting an eye. You imagine it. I prefer not to try any more. For the first time, I feel really happy to be in the hospital. I smile broadly as I turn off the CrackBerry and gaze out the window, thinking “I am in the hospital. And I don’t have to respond to your e-mail now, or ever. Go me, bare ass, heart monitor and all.”

October 26: The surgery is the simple part. Once I get over the shortness of breath and the nausea from the anesthetic, I’m good to go.

October 27: I’m eating my oatmeal like a good girl when the PA comes in and tells me I can go home any time. Oh joy! They give me a flu shot, discharge instructions, and take out my IV. Yay pants! Soon I am home, and having a conversation with Queenie about her latest run-in with the ‘rents. The best thing that happened all summer is Metanous losing his other job–because now he gets to work from home some of the time, and I can gaze fondly at the back of his head as I type my tale of woe. I’m a little sore and can’t bend over far enough to tie my own shoes, so I need his help. The minor discomfort I feel does not rise to my definition of pain, however, so I probably won’t fill the Percocet prescription. It would be like shooting a mosquito with an elephant gun. And if Rush Limbaugh comes trick or treating, I already have one bottle of Percocet that I didn’t use the last time I had surgery. ; ) I am, however, forbidden to drive till I see the surgeon again in a week or so. Therefore, I cannot go to Michigan. I will be home for Halloween. Right now, I can’t imagine anything nicer. If ghosts come to see me, I will laugh in their faces. I’ve been terrorized by experts. It would be nice if Vergil would come by and wash my tear-stained face with dew, but I guess that’s not happening. Unlike Dante, we have not yet emerged to find the stars.