I just booked airline tickets for another trip from the East Coast to California. Not for pleasure, but for business: I need to check in on my parents to see how they’re functioning as their dementia progresses. Although I have a couple cousins living near my folks to keep me apprised, as their daughter I’m responsible for making the calls determining whether they will continue to live independently or with professional assistance. Are they eating all right? Keeping up with the house? Keeping up with basic hygiene? How close are they to the point when their driver’s licenses should really be revoked (and oh, dear God, what do I do then)?
It’s often said dementia turns the parent-child relationship on its head – and it’s true, I find myself monitoring my parents in a way that is downright motherly. But my parents not only suffer from dementia, but from addiction and dysfunction as well. And caring for them is necessarily forcing me to engage in coping behaviors from my very messy childhood – behaviors I’ve worked for decades not to engage in. Day by day, as I become my parents’ parent, it feels less like the natural course of maturation than a disturbing regression. Let me explain.
An Unremarkable Past
I hesitate to share this, as I don’t want to engage in Victim Porn. Not because I don’t want your sympathy, but because I do, and quite badly. One of the greatest temptations of my life has been to use my upbringing as a false crutch, an excuse not to shoulder the kinds of responsibilities that normal adults take on as a matter of course. So I’ll try to keep this short:
I grew up with an alcoholic and (quite likely) crazy father, and a passive mother who suffered but refused to leave. God bless ‘em, they’ve been married nearly sixty years now. That’s more than enough time for all the bad habits – the drinking and the histrionics, the martyred forgiving and turning a blind eye – to fossilize. But it’s also more than enough time for love to sink its roots in, deep, and my parents love one other – destructively, but genuinely. As Tobias Wolff wrote (and he should know), “The human heart is a dark forest.” I may not fully understand them, but my parents had and have their reasons.
I’ll spare you the blow-by-blow account, as there’s no need. As others have noted, Tolstoy was dead wrong: It’s the unhappy families that are all alike. I could describe what was done, said, and inflicted. But in the end, it’s no different than what was done, said, and inflicted in any other family helmed by a volatile addict and his enabler. The abusive outbursts, the plaintive tears, the hang-dog skulking the next day, the willful forgetting and pretending? It’s basically the lurid, perverse version of those Hallmark Channel Christmas movies: same story, different details. For the morbidly curious, just know my Father’s particular brand of dysfunction relied heavily on dramatics: long soliloquies, shouts and tears, the wielding and breaking of props. He thought he was Shakespearean. In reality he was more Shatner.
Like a lot of kids with similar upbringings, I chose to be Good. I funneled my considerable anxiety into studying and achieving, such that I was accepted into a Really Good School (Thanks, Mom and Dad!). While it’s nice to have a fancy alma mater, I have no pretensions I’m much different than those who survived a chaotic home by becoming burnouts or troublemakers. I simply had the fortunate inclination to direct what was gnawing at me to productive, socially-approved use. I also had a church and its associated youth group. These days, it’s become fashionable in some circles to deride religion as backwards and delusional. Yet I can say without hesitation that a relationship with God made all the difference for me. It was a steady counterweight to havoc; it gave my life a moral spine that allowed me to face the future, if not bravely with thrust-back shoulders, then at least upright and on my own two feet.
I entered into and navigated adulthood with varying degrees of success. Through it all, I managed to maintain an affectionate relationship with my parents – from afar. I knew early-on my parents’ sturm and drang would consume me if I lived within driving distance, so I opted to marry and settle down on the opposite coast, protected by a three-thousand mile buffer zone. For nearly three decades, that arrangement sufficed. Sure, there were the occasional “incidents” my mother relayed tearfully over the phone, but my father’s drinking and abuse were largely out-of-sight, out-of-mind. It’s remarkably easy to “love” people – even the most difficult sort – when any meaningful contact with them is limited to three or four visits a year. Anyone can do laughter and fond reminiscing and light chit-chat for a long weekend. As Chloe Sevigny’s character says in The Last Days of Disco, “Anyone can be nice.”
My present dilemma is that this arrangement is no longer feasible. My mother is showing the signs of dementia, with all the accompanying confusion, memory loss and anger. My father is also struggling with confusion, memory-loss and anger – his brought on by cirrhosis, flooding his brain with toxins. My trusty buffer zone is shrinking, as I’m now called upon to make regular cross-country flights to assess their condition, take them to medical appointments, and [try to] coax them into accepting assistance.
It’s a dilemma many if not most children of Baby Boomers have contended with, or will. In that sense, believe me, I realize I’m not special. But I do have a particular challenge: In attempting to address my parents’ dementia and get them the help they need, I have to re-adopt the very habits, ingrained in childhood, that I’ve fought so hard to undo.
Un-learning and Re-learning
When you grow up with messed up parents, adulthood is a process of un-learning, of dismantling the crappy foundation your folks set, then re-building, brick-by-brick, a footing to support your weight. For myself, it’s meant un-learning two bugbears in particular: indirection and its close sibling, dishonesty.
Not to brag, but I am a master of indirection, also known as passive-aggression. In my family, direct criticism of my father, no matter how slight, was verboten. Even pointing out he had hung a picture frame crooked could provoke one of his tirades. I don’t know how, exactly, I was educated in indirection, yet over the years, by slow degrees, I learned and honed its techniques, e.g., communicate dissatisfaction wordlessly through stiff posture, a stone-faced demeanor, or barely perceptible eye-rolls. If you must speak forthrightly, do so under your breath or with forced nonchalance. And if you’re caught and called out on your anger, then deny it – preferably with a look of Bambi-eyed innocence and confusion. I’m not angry. Why do you think I’m angry?
Denying anger is dishonesty, and I never became all that good at it, mainly because I’m cursed with a face you can read like a book. I did learn, however, to become a passable story-teller in the “Everything’s Fine” genre – in other words, a decent small-time liar. Why did my father wait to stumble in during the last half of the second act to catch my performance in the school play? Because he had car trouble – not because he was at the town dive bar getting hammered. Why did I look like I hadn’t slept all night? Because the neighbor’s party kept me up – not the sounds of adults screaming and weeping. Nothing to see, here. Please move along.
Understandably, my indirection and dishonesty drove my husband absolutely bonkers when were young marrieds. He and his parents immigrated to America from Minsk around 1970; I can say, without hesitation, they are the most breathtakingly honest people I’ve ever known. Their modus operandi is see problem, articulate problem, address problem. You can imagine the kind of monkey wrench I threw into that arrangement.
Incredibly, it never truly occurred to me I was indirect or dishonest until the day I was tidying the kitchen within earshot of my father-in-law. I have no recollection of what I was so steamed up about; it must have been something stupid, probably the bare fact that I was tidying the kitchen alone when I wanted some help. In any event, instead of simply letting my father-in-law know I could use a hand, I indulged in some classic passive-aggression. I Made A Big Deal out of emptying the dishwasher, making sure the cutlery and plates clanked against each other. I closed every cupboard and drawer just a bit too hard to let the world know I was Not Happy. I sighed – quivery sighs, my breath calibrated to incite just the right amount of sympathy and concern. Or so I thought.
“What the hell’s the matter with you?” my father-in-law finally asked.
“Nothing,” I replied – unconvincingly. (I told you I’m no actress).
“The hell it isn’t! Listen: something’s bothering you, spit it out.”
Now, I know for most, the foregoing exchange is about as unremarkable as it gets. But for me, it was a Damascus moment, a startling revelation that how I had been living was not only needlessly circuitous but crazy – not to mention exhausting for those I love.
So I started making efforts to be more direct and honest. Many of these efforts have been flops. Adults understand you need to be forthright about what’s making you sad, or angry, or frustrated. They also understand such forthrightness is no guarantee the other party will agree that your sadness, anger, or frustration is warranted. But because I am part-child, when I muster the wherewithal to be direct, I crave the reward of concession, the acknowledgment that I Was Right All Along. Surprise, surprise: Resolving conflict between one or more autonomous human beings usually doesn’t work this way. As such, I sometimes find myself responding to push-back with yet more indirection (non-sequitur, left-field counter-arguments are a fave).
But often I don’t. Often I now speak candidly about a problem, even when I’d really prefer to drop meaningful hints, or give non-verbal cues, or even ignore the damn thing entirely and hope it’ll blow over on its own. And these days, if I need help cleaning the kitchen, more likely than not I’ll tell you so. In sum: After many years of trying, I’ve made measurable progress towards being more direct, more honest.
And now my parents have dementia and I’m told to be anything but.
The Current State of Things
“I’m concerned you’re having trouble remembering things,” I told my Mom.
I subsequently learned this type of directness was not going to work with my Mom. I learned this fairly quickly – five seconds later, in fact – when my Mom shot back with: “Oh yeah? Well, fuck you.” This, from my white-haired, five-foot-two, Chicos-clad mater. The demure woman who worshipped Doris Day. The gal whose all-purpose cuss word was heretofore “snazzafrazzits!”
My Mom can get mad all she wants, but it will not change the fact that she is forgetting large swaths of quite useful things. Such things include names (a longtime family member is now “one of the wives”); driving directions to once-familiar places; and appointments (a friend who arranged to pick up Mom for an outing told me how baffled she was to arrive at the agreed-upon hour, only to find Mom pulling out of the driveway, acknowledging her with no more than a perfunctory wave as she sped off). When she’s not losing memories, she’s creating them. She insists she sent me to sewing classes as a child (nope); that my sibling attended college in southern California (not even); and that she was raised Quaker (my Mom has never set foot in a Quaker church and has no idea what, in fact, a Quaker is).
“That’s not true,” I initially responded to these stories, before I caught on that correcting her only led to another, zestier round of fuck yous. My worst error, by far, was telling her I thought she could use a “helper” – someone to stop by once or twice a week to do the light housework that now piles up; or cook a fresh meal for a change; or manage her online medical care (as anyone who has had to secure a Covid vaccine for an elder with dementia can tell you, this is a biggie). “Mom, I think you could use a helper,” I said during one of our phone calls. See problem, articulate problem, address problem.
She promptly hung up on me. And, as a parting shot, she rescinded the privacy waiver forms authorizing me to speak directly to my parents’ physician about their health.
Meanwhile, my Dad lives a parallel existence in his own self-constructed reality. I was with him during the initial consultation when the physician stated there was a problem with his liver and kidneys. My sibling was with him when the physician confirmed the cirrhosis diagnosis. Yet still, my Dad steadfastly maintains his ailments are all due to “heart trouble” – despite the quarts of fluid drained periodically from his abdominal cavity via paracentesis, despite the cirrhosis-prescribed drugs, and despite the, oh, decades of drinking to black-out.
“I don’t know why the doctors keep talking about cirrhosis,” my Dad stated.
“Because a slew of tests show you have cirrhosis,” I answered. “And because you have a serious drinking problem.”
This caused a tremendous furor, with both my parents reacting as if I were not only nuts, but offensively so (picture a frail but enraged Joe Biden barking, C’mon, man!, but with a lot more profanity). My Dad followed up this conversation by sending me a letter in which he copped to a bit of binge drinking in his misguided thirties, when he was grappling with the stress of supporting a young family. But thanks to the intervention of friends, he wrote, he stopped cold-turkey sometime in the 1980s and hasn’t touched a drop since. It was this discipline that transformed his life and allowed him to become the much-loved educator, community-leader, and all-around great guy he will be remembered as long after he’s passed.
I still have this letter. I keep it as a reminder of the limits of – or, for you glass-half-full types, the limitless creativity of – my Dad’s mind. To the extent that it purports to tell me the facts, it’s really quite astounding. I dealt with his bouts of drunkenness from at least five years of age and well into my adulthood. I saw and heard everything. I was there.
Yet in a sense, to my Father, I wasn’t. The only way I can square his version of events with mine is if I was never truly real to him. It’s a very, very weird feeling to discover your parent never knew you as a full-fledged human being in your own right, but rather only as a character in the movie playing in his head – a movie in which he is writer, director and star. I admit to being a little envious: It must be wonderful to be both the architect and inhabitant of your own matrix. Then again, maybe it’s hell, like living inside a crumbling edifice that’s just one strong wind from collapsing under its own weight and burying you alive.
Backsliding
So my parents are a big hot mess of denial, delusion and anger. Or maybe it’s not denial and delusion, precisely. Both seem to be exhibiting what the internet tells me is anosognosia: The belief amongst many, many Alzheimer’s/dementia sufferers that they are actually just fine, thank you very much (or as my parents would say, fuck you very much). Whatever the reason, their brains just can’t register their decline. Consequently, they greet any suggestions that they are less than 100% with everything from ornery irritation to incandescent rage.
How to help the parents who are blind to the fact that they need it? I’ve discussed this with others who have suffered through the same ordeal with their own parents. I have combed through many resources from Alzheimer’s and dementia organizations; I have haunted online forums on elder care. What I glean is: My only hope of helping my parents is through my old familiar nemeses, indirection and dishonesty.
For example, I want to tell my Mom, in a nice, straightforward fashion, “Your place is too big for you to keep clean all by yourself at your age. I think you need a housekeeper.” Instead, I take the back-door, manipulative tack. “Mom, it’s incredible you’ve never had a cleaning service – we hired one as soon as we could afford it. The house looks great because you’ve always been so tidy. But you’ve had to keep on top of the cleaning your whole life, and I think it’s high time you deserve a break. You’ve earned it! Your friend Jean uses a service. Maybe we could ask her for the number?”
To recap: A benign lie (the house actually isn’t looking so great). Flattery (up until now, she really always has been tidy). Appeals to martyrdom (and hoo-boy, does my Mom derive a righteous sense of identity from martyrdom). And good ol’ peer pressure (Jean’s doing it, so it must be okay). Has it worked? Sort of. She got the cleaning service number from Jean and she’s “thinking about it.” Hardly a victory but it beats a fuck you and a cold dial tone.
As for my Dad, I indulge his delusion that he is neither an alcoholic nor suffering from cirrhosis. I make a point not to mention his condition; I ignore the bottles of beer and wine cramming the fridge. My main goal now is to coax him into at least pondering the idea of a home nurse – not that there’s anything wrong with him! No, of course not! But God forbid, if sometime in the far-off, distant future he should possibly decline . . . would he be amenable to a nurse? Just a couple times a week, for Mom’s sake? Like his wife, he’s “thinking about it.”(And lest you think this kind of theater ridiculous, let me reply, “Honey, you have no idea.” The internet is replete with stories of desperate children whose only way to prevent their senile parents from driving is to surreptitiously remove the batteries from their cars, then tell them “the car needs to go to the shop.”).
So I’m back to my old routine: nothing to see here, please move along. Obviously, I don’t do this for the co-dependent thrill. The regression angers me to no end. Haven’t I spent my adult life clawing my way past indirection and dishonesty? Haven’t I tried to construct an independent existence, a better existence, separate and apart from the steaming casserole of dysfunction that is my parents? Will I ever escape my parents? I feel like Al Pacino as Michael Corleone, screaming his cri de coeur: “Just when I thought I was out, they pull me back in!”
And yet, there is a countervailing weight to my anger: the knowledge that my parents are, for all intents and purposes, children. They have always been children. Devious, tantrum-prone children, given to terrible flights of fancy. But Jesus loved the little children, did He not? I believe I am called upon to do the same. It’s not much of a stretch, after all. Just like Tobias Wolff said, my heart is a tangled forest. Even when bound by resentment and shame, love still spreads its hoary roots.
Secretly, I always clung to an idealized – and, quite frankly, ridiculous – view of my parents’ final years. I carried a yearning for resolution of the questions that have always dogged me: Why did it happen? Why was it said? Can we own our sins and forgive one another? My yearning was so strong, it sometimes carried the force of conviction; I half-believed a full accounting and forgiveness would occur. But this past year, especially given the COVID lockdowns, my parents’ dementia progressed at a fast clip; they dug down on their own indirection and dishonesty, becoming more and more of themselves. Any hope I had that my father would relinquish his narcissism, that he would at long last tear his gaze from his navel, ended when my Mom informed me he was hard at work writing the glowing eulogies he wanted my sibling and I to deliver after his death.
There will be no reckoning before they go, no final clearing of the air. At this point, all we can do is love each other as best we can. As for forgiveness? I pray we will be able to fully forgive one another. I’m not certain it will occur.
Perhaps I should have tried to clear the air sooner, before my parents’ cognitive decline. Perhaps it wouldn’t have made a difference. Either way, I’ve come to accept things as they are as opposed to how I wish they were. It sounds like bitter medicine, but it’s a relief, of sorts, and a necessary one, because it allows me to care for my folks without the added psychic weight of unfulfilled expectations. I make the appointments. I take them to places just to get them out. I call them just to tell them I love them. I am the parent and the child, all in one.