Last night, as the hour of the first debate drew nigh, I found myself torn. As someone raised in a family with very strong political opinions, it’s always in my best interest to stay informed. As someone raised by a mother for whom horror movies were required viewing, I like being scared. In this, the first of three debates before Election Day, I had the opportunity to be informed AND scared. But I wasn’t sure if I could deal with this particular kind of scare. Was it willfully ignorant to sit it out and watch “Re-Animator” instead?
Ultimately, I went for the relative comfort of gore over the risk of elevating my blood pressure by watching the debate. The personal is political and all that. I did wind up watching the last 20 minutes or so, and that was enough to give me nightmares. I’m serious. I should have stuck with the horror movies.
I honestly don’t think there’s been an election season as frightening as this one. I don’t know if I was even a fraction as horrified by McCain/Palin as I am right now. You think there can’t possibly be as stupefyingly preposterous a ticket as the last one, only to be proven horribly wrong.
Anyone who knows me knows who I’m absolutely NOT voting for. I debated whether or not to even bring it up in this piece. But I’ll say it, because I may as well: Trump is terrifying. Trump is like Leatherface, Jason Vorhees, and Chucky all at once, with a dash of Tall Man from “Phantasm” for bad measure. I won’t even compare him to Pinhead. That’s an insult to Pinhead.
I’m not the kind of horror fan who spends a great deal of time thinking about the psychology of the canon’s chief monsters. Certainly monsters can represent the things we loathe and fear within ourselves. And there’s no doubt that isolation, in most cases, creates the monster (see: Grendel, or Frankenstein’s monster). Sometimes I certainly do find myself rooting for the monster, especially when its “victims” are deliberately unsympathetic (and they’re always the first to go). I can, and will, wax academic about my preferred genre, but this is when I feel compelled to defend myself and my creepy ways. Mostly I’m in it for the screams, really.
But I can’t help but think that this election season is a monster of our own making, fueled by isolation, AND fear, AND loathing. Unlike Grendel, or Frankenstein’s monster, this isn’t something that is trying to communicate or connect before the fury fueled by constant misunderstanding wipes away all hope of redemption. This is something that rages, flails, and smirks with a Mephistophelean leer that says: “You’re fucked.”
The scares we want onscreen tend to dovetail with the fears we have as a society. A couple of months ago, I had a nice chat with Judith O’Dea (from the original “Night Of The Living Dead”) about how the surge in zombie narratives tends to coincide with periods of political unrest. What does a zombie represent more than the fear of lack of control? You can’t even be dead without something forcing you to continue to lurch in a mindless herd.
I deeply enjoy cringing and not quite being able to look away from something that’s pulsating, glistening with viscous matter, dragging its entrails, or any combination thereof. There’s a kind of low comedy to hyper-splatter that keeps one at a reasonable adrenaline level. Horror allows for the thrill of a “fight or flight” response without having to, you know, actually outrun a guy in a flesh mask wielding a chainsaw. It’s better than therapy, sometimes. A vacation into the implausible (although right now it’s also a vacation FROM the implausible).
And so it stands to reason that this is, for me, an escape from the boundless fuckery that is currently, unsuccessfully, masquerading as the 2016 presidential campaign. I would sooner sit through all four of the “Subspecies” movies again than navigate social media right now. And Radu has better hair than Trump.
I’m not quite sure what it says about the culture, or just about me, that I’m sitting here writing a “thinkpiece” about why I pulled the plug on Facebook this morning. A Google search will yield all kinds of posts like this. Why I Left Tumblr. Why I Left Twitter. And I’m not even 100% certain I’m going to permanently scrap my Facebook page. What I do know is that it’s not helping matters right now.
I have clinical depression, Generalized Anxiety Disorder, PTSD, and a host of other things simmering away in the janky old crockpot that is my head. The medication that was recommended I take backfired, horribly. So I’m back to the drawing board. And I am trying to think of what needless stressors I can jettison while I am trying to get well.
And I had to come to the conclusion that a big one was Facebook.
It’s not just because we’re in an election year, although that has something to do with it. There’s an epic fuckton of negativity going around there, from all sides.
And issues. So many issues. So many people all of a sudden terrified that the “transgendereds” (sic) are demanding too much special treatment, treatment that is evidently going to throw wide the bathroom doors and usher in a terrible new epoch where molesters in dresses will lurk in stalls and under sinks. And no amount of common fucking sense will quell the hysteria.
But then there’s just me. Me being the obsessive, perpetually panic-stricken weirdo that I am. Second-guessing every last goddamn thing I post, because I know that SOMEONE is going to take it the wrong way and launch some passive-aggressive ickiness my way. I don’t like to make people mad. But I also don’t like being pelted with “Well, actually…” when I’m trying to just work something out in my own space. That happened fairly recently. I also have had to deal with former friends creating fake accounts specifically to harass me after I terminated the original connection. There’s something about the place that encourages disrespect, and brings out some nasty things in people, myself included.
And as I’m trying to deal with this latest, near-crippling, depressive episode, I’m finding that I just don’t want to be anyone’s court jester right now. That’s pretty much always been my role, ever since I was a kid. But jesters need a break, too. But when I try to get serious, I’m apparently not serious enough. Or I’m exclusionary. I’m deliberately trying to make people feel bad. Can’t win. Tired of trying.
The thing is – I love Facebook. God help me. I do. I reconnected with a lot of old friends there. Very few platforms are easier to share one’s writing on, and for that reason, I’m wary of completely walking away from it.
What I need to figure out is just how important it is for me, really. How much I am really going to be missing by not being able to click in every 20 minutes? And then that brings up the more uncomfortable question: how much are people really going to miss ME? I have to admit that, as I sit here writing this, Facebook is rolling along perfectly fine without my wiseassery and Peter Murphy videos.
I won’t lie – today it’s been embarrassingly difficult to not log back on, reactivate shit, and pretend like I never announced I was leaving. I’ve seen that plenty of times, and I get it. It’s like being in junior high again and knowing in my heart of hearts that everyone is having a slumber party, complete with a rousing game of “Light As A Feather Stiff As A Board,” without me. And I desperately want to make sure that’s not true. But for my own sanity, I can’t. I’ve committed to being off this particular grid for at least seven days. I suspect I am going to be happier for it, but right now, I am jonesing hard.
My aunt recently posted a picture of a letter written by my (patenal) grandmother 36 years ago. In it, she says she’s been “like a big fat frog sitting on a lilypad letting everything swirl around me.”
That’s me, right now. I have been feeling very stuck, very “less than,” watching things happen and not making much of anything happen for myself.
I’ve committed to writing something here once a week, no matter how vapid and/or disorganized it is. I go to the gym three times a week. I go hang out with other drunks and talk about not being drunk. I make a concerted effort to put on makeup and look “professional” every day. But it’s all by rote, almost. I’m going through the motions, but there is very little joy in Mudville.
I realize that this is depression. And what I am doing is staving it off somewhat. These things at least distract me to the degree where I’m not spending ALL of my time weeping on the couch and believing the terrible stories my brain is telling me:
My husband is going to leave me for his cute perky coworker.
My new boss is going to see right through me for the fraud that I am and fire me.
I’m not going to lose the 15 pounds my doctor told me I needed to lose last summer.
I’m going to wind up living in a refrigerator box, or at least in a terrible apartment with three other roommates who are at least 20 years younger than me.
I’m going to be a bitter, lonely old woman and my nieces and nephews are going to resent having to buy me Jean Nate gift sets at Christmas.
And on and on. And the thing that people who don’t have chronic depression and anxiety don’t understand is that I absolutely, 100% BELIEVE that all these things are going to happen. I’m going to be jettisoned for the perky coworker, and be unemployed, 15 pounds overweight, and living in a refrigerator box with 18 Jean Nate gift sets. This is going to happen, and I am helpless to stop it.
When I write it all out, it of course sounds fucking ridiculous. I need healthy distractions, but since I spent the last 6 years distracting myself from the reality of being a caregiver by engaging in UN-healthy things (the one thing I can say for myself here is that I never once thought of drinking in the midst of that horror show), it has proven incredibly difficult to break away from the “comfort” of bad food and bad television.
A thing I was taught in early sobriety is to act “as if.” This is actually hard for me, even with a B.A. in Theatre. I want to act as if I’m a confident Woman Of A Certain Age who is absolutely not threatened by my husband’s cute coworker, the new dynamic in my office, or the stubborn blubbery ring around my middle. I want to act as if I have faith in something bigger than myself and that this something has my best interests at heart. But that’s really difficult sometimes. Actually, that’s difficult MOST of the time. But yet I get up three mornings a week at Stupid Fucking O’Clock and I work out. I put on makeup and try to look like an adult. And here I am writing something and posting it, knowing it’s whiny and gross.
But oh well. Guess I should start making room in this box for this Christmas’s Jean Nate gift sets.
In an effort to mitigate the depressive episode I’ve been in for a while (and to try and take off a few pounds if I can), I’ve committed myself to going to the gym every other day. Nothing excessive; I’m hardly a gym rat, and I have to start with small, realistic goals here.
I go with Coombsie. In the morning. Pre-dawn. It’s really the only time that fits for us and our schedules. This is dreadful for a number of reasons, not the least of which is that I am an angry beastie in the morning. When I wake up and get out of bed, I usually have to go sit on the couch for at least 10 minutes, contemplating the horror of being awake. Then it takes me two cups of coffee before I can even handle putting on my makeup and getting dressed. It is a process for me, “waking up.” It is not that way for Coombsie. He is relentlessly, unpleasantly cheerful.
To manage this “every other day” thing, I absolutely have to have my sneakers and my gym clothes at the foot of the bed. If they are in the dryer, that is too much effort. If they are in a drawer 10 feet away from the bed, that is also too much effort.
Once I am dressed, I sit on the couch with my iPhone, my Kindle, and my headphones, because I also will not go to the gym if I don’t have these totems with me. I need music to blunt the savagery of being up this early. I need words to keep me from obsessing over how many calories I’m burning.
In the car, Coombsie makes small talk. To himself. Because he knows I’m not listening.
We arrive at our local Planet Fitness, where allegedly one can work out sans Judgement and with no fear of being “Gymtimidated.” Indeed, at Planet Fitness, “you belong!” I mutter terrible things about where I’d like Planet Fitness to “belong” while Coombsie bounds across the dark parking lot like a Labrador puppy, yelping “DUDEBROGUY!” while giving the thumbs-up to imaginary dudebroguys. The only thing that would make me happy, besides being back in bed, would be a sinkhole developing out of nowhere and taking the Planet Fitness down into its gravelly depths. “You Belong,” indeed.
Once I’m there, though, and fully resigned to my fate, it’s….just as fucking terrible. IT’S STILL DARK OUTSIDE. I heave myself onto an elliptical machine facing the bank of television sets. I can watch old-ass episodes of “Charmed,” the local news, ESPN…pretty much everything except what I’d LIKE to watch, which would be my cats slumbering peacefully at my feet WHILE I’M STILL IN BED.
Fuckthisshitfuckthisshitfuckthisshit.
I glance over at Coombsie, who’s already several minutes into his workout, and happily watching an old-ass episode of “Charmed.” There is no way I can convince him to take me back home. So I put on my headphones and prepare to grunt and lurch while simultaneously listening to my Pandora station and attempting to retain what I’m reading.
When I’m not reading utter trash (and Kindles are FAN-FUCKING-TASTIC for that sort of thing, because then nobody can see that I’m reading true crime), I’m currently shoring up my theological expertise, which I abandoned – oh – probably shortly after I graduated college and stopped studying religion for fun, because drinking my weight in skunky Rolling Rocks and engaging in “experimental theatre” became more interesting. And that was all rather liturgical in a boozy, rancid sort of way, if I really try and remember it. Anyway, I’ve plowed through all three of Nadia Bolz-Weber’s books, which were really good, and now I’m on to a couple of books that she recommended: The Year Of Living Biblically, and Meeting Jesus Again For The First Time. The latter has been promising so far; I’m hoping it won’t fall flat the way Rabbi Jesus did, because I really had to force myself to finish reading that mess of fantastical speculative…um…mess. “Historical Jesus” and the synoptic gospels were subjects I got really into as an undergrad. Historical Jesus & The Synoptic Gospels would be a good band name. Christ, I’m delirious.
So I’m reading about Historical Jesus, and listening to Alien Sex Fiend, and I’m still so pissed about being here at stupid o’clock that I don’t even think to be amused by this.
I watch the sun rise over the new police station they’re building right across the street. I wonder if, when construction is completed, there will be a coterie of hunky cops among our sweaty ranks here. Probably. As it stands, the Dawn Patrol here at Planet Fitness is mostly people like me and Coombsie, getting that cardio in before going to work. There’s a woman who is always here well before we arrive, and puts in at least 90 minutes. She works out with a ferocity that I think I might have had, at some point, between the Skunky Rolling Rock Theatre years and when I moved to this town to help take care of Coombsie’s mother. There were a couple of years where I was pretty fit. How did I do that? Can I do it again? I don’t know. I’m in my forties, I’m fighting this depression like it’s my job, and at this point I really kind of have to settle for “pretty good.” On all fronts.
I finish up, and go sit in the giant yellow hand chair, and contemplate the horror of not only being awake, but having been awake since before dawn, AND having worked out. Who am I?
Listen. I struggled. Nobody knows how I struggled.
I spent my early twenties in a riot of part-time jobs, “underground” theatre, and literature classes and the whole period reeks of skunky Rolling Rocks, unwashed flannel, and ennui.
What was minimum wage back then? Fuck if I know. I was drunk.
When I got my MFA (in Creative Writing; my BA’s in Theatre – I win for racking up the most non-lucrative degrees), and had to deal with Sallie Mae for the first time, I looked at the debt I’d accrued, did some mental calculating, and figured I’d be done paying my loans in about 20 years. It was horrifying. It was depressing. So I probably got scuttered and went home with a bass player. That’s what you did BACK IN MY DAY.
I’m not going to scold Talia, or Stefanie, or Sara Lynn (but I will give props to her outstanding eyebrow game). I’m 45. I carry tweezers in every goddamn bag I own. And those tweezers aren’t for MY eyebrow game, I’ll tell you that much. The other day I had a hot flash so bad I had to roll down the window and stick my head out of it like a Golden Retriever. Everyone’s got shit.
As we get closer to placing my mother-in-law in assisted living, I find myself breaking down more than I did when we were looking at no end in sight to this particular leg of our journey. I’d say I cry, on average, about 4 times a week now.
If all goes according to plan, she will be in assisted living by early July. And yet I am walking around in a grim little cloud of dread. This is partially because of how I’m wired. I am perpetually at the train station on the corner of Fear and Faithlessness, with my passport stamped for Worst Case Scenarioland. I’m convinced that something will go wrong, like the staff from the facility will come to evaluate her and tell us there’s no way they can take her.
And then a lot of is simply situational anxiety. We are living day-to-day in a veritable pressure cooker: Is she up? What is she doing? Can we get to the litterbox before she does (because if she gets there first, there is no telling where we’re going to find cat poop)? Is she going to try and move something she shouldn’t? Can we keep her out of the basement? What is she doing? Why are her underpants on a plate under the bed? How long have they been under the bed? How can we stop her from continually clawing at herself? What is she doing? Are we going to be able to convince her to take a bath? Is she sleeping? What is she doing?
There is no way I can “relax” under these conditions, no matter how many times people tell me to do this. I am functioning, I am remembering to breathe, and that’s about the best I can do.
And then there’s the guilt. On a good day, when she hasn’t wandered out into the yard and attempted to dig up the azalea bush with her bare hands because she doesn’t like it anymore, when she is sitting quietly and leafing through a photo album, I think to myself, “How can I do this to her? She’s fine.” I have been conditioned, as many of us have, to believe that when a loved one has Alzheimer’s, the “best thing” is for her to remain at home, surrounded by family members who may or may not have the skills to deal with the myriad issues that come with the diagnosis. And, you know, in many families that’s absolutely true. It isn’t in ours. Even with help, we cannot take care of her properly anymore, if we could even take care of her properly AT ALL, and sometimes I feel like the biggest pile of shit in the universe for my overall inability to deal.
And then yesterday I logged onto my online caregiver’s support forum, and saw a new member chastising anyone and everyone who mentioned having to put their loved ones in assisted living or a nursing facility: “They didnt give up on u why u give up on them?” Are you KIDDING me? This is a support group, right? Did I log onto the wrong forum? Is this the “Let’s Make Caregivers Feel Like Crap For Making Really Difficult Decisions” forum? What the fuck, lady?
Lord, I’m a mess. I can’t imagine what I’d be like if we didn’t have the support we do. I feel like such a selfish git for looking forward to the day I can hear that so-and-so is playing at such-and-such and realize that I can actually go, without calling my brother-in-law or the home aide service, without working around more than one other person’s schedule. I feel like a jerk for looking forward to waking up in the morning and NOT listening for running water that’s running a little TOO long. But I can’t help it. Superficial crap like this is what is keeping me going.
I hope that once she is there and safe I can breathe a little deeper and remember to not take anything for granted. Going out to eat. Running an errand without looking at the time every 10 minutes. My own ability to remember my name, the year, and who the President is.
A woman in my support group mentioned that once her journey is done, she is going to make herself available to sit with an Alzheimer’s patient for a couple of hours to give his or her caretaker a break. I nearly burst into tears when I read that. It’s an incredibly generous thing to offer. Because TIME – even an hour or two – is what we crave the most. But it’s also the thing we feel the worst about asking for. Everyone we know is busy. Busy with kids and work and plans. To ask someone to please watch my mother-in-law – who cannot carry on a conversation, play a board game, or sit through a movie – feels like I’m imposing in a huge way. I love her very much, but she is profoundly impaired and if you’re not used to this, I can tell you right now it’s a very long couple of hours.
This disease is so horrible. It’s more than memory loss. A person with Alzheimer’s doesn’t go gently into that good night…sitting in an easy chair and slowly drifting into a vague dream state. And every time a friend of mine jokes that he or she is getting Alzheimer’s because of something like lost keys, I want to scream. Stop it. You don’t have Alzheimer’s because you misplaced your iPhone. But I get it. Before I witnessed this first-hand, I said the same kind of stuff. Old Timer’s Disease. Haw haw haw. I had no fucking idea.
The statistics right now are not in anyone’s favor. The chances are very good that someone you love is going to be diagnosed with Alzheimer’s in the next few years, if it hasn’t happened already. I write about this because I have to. This is the day-to-day awfulness of watching someone slowly lose almost every bit of what made her who she was. I’d love to talk about something else, but I can’t.
I want so much to believe that we’ve done the right thing, that things will be a little easier for us, because I am so tired and so unbelievably stressed out by just the last 8 months of this.
Five years ago, Kevin and I almost split up. We came to our senses, agreed to work on ourselves and our issues, and less than a year later, my mother-in-law was diagnosed with Alzheimer’s. And then we didn’t have time to “work on ourselves and our issues” anymore. It seems they’re being worked on now, as we try to slog through all of the paperwork, appointments, and surprises that are continually being lobbed at us from doctors, lawyers, and various and sundry “administrators.” We are more of a team now than ever. We take turns ranting and quietly listening without judgment. I give his mom a bath, get her dressed, and tend to the cuts and wounds on her legs from the constant scratching. He fills out the paperwork, makes the appointments, and writes the checks. We both fix her meals and keep her apartment clean. I’m glad we stayed together. This is what needed to happen.
So there’s that. I suppose I have to give myself some credit in the midst of all this.
And in the midst of it all, I have been blown away by the simplest acts of kindness. The friend who sent me a Starbuck’s gift card. The religious ladies on the caregivers support forum who keep telling me they’re praying for me. And this ridiculous thing that another friend sent to me today:
Skeletor on a kitten. My word, the world really is a great place, isn’t it.
For the last few days, I’ve been sick. Wiped-out, snot-blowing, Dickensian-orphan-hacking SICK.
This has made caregiving more than a little challenging, but with faith, perseverance, and DayQuil, I managed to get through the weekend.
I made it through this whole dank, dark winter without so much as a sniffle, so I should have known this was coming. Because when I get sick, it’s always an event that can stretch on for weeks. It’s just the way it happens with me. I didn’t just get swollen glands as a kid; I got some kind of freakish blockage that required several trips to Mass Eye & Ear and about a month home from school in the 4th grade. I’ve also had two staph infections, and a bout with walking pneumonia in my twenties that pretty well ravaged my immune system. So I try, very hard, not to get sick.
Because I don’t just “get a cold.” It settles deep into my lungs and renders me sleepless for nights on end. Most over-the-counter cough medicines are out of the question for me, given my history. So I just try and stay hydrated, and load up on the rancid, root-y nastiness that are Fisherman’s Friend lozenges.
And yes, friends – I have tried VapoRub on my feet, apple cider vinegar, tea with honey, and just about every other olde-tyme-y remedy out there on the internet. I suspect what I need are just plain NARCOTICS, but this would require asking Coombsie to dispense it for me (I mean, I’ve been sober 11+ years but I still don’t entirely trust myself around the “good stuff,” cough-suppressant-wise) and he’s already managing Mom’s medications.
The last couple of nights I’ve been hacking so loud and so often that I’ve retreated to the couch in the living room, so that at least Coombsie is getting some sleep.
At around 3:30 this morning, on the couch, I had an epiphany. I was thinking about actually going back to bed, because I really, REALLY didn’t want to greet the dawn on the couch. That just struck me as horribly depressing, and I realized how long it has been since I’ve needed to pass out on someone’s couch.
I’d say I had to do this very thing, oh, dozens of times throughout my twenties. I’d get too drunk to manage to get myself home, and so I’d wind up on all KINDS of couches throughout the Greater Boston/Cambridge area. Coworkers, friends, ex-boyfriends…somehow they took pity on me and let me crash on their couches. Some would make them up into some semblance of a bed. Some would just leave me to my own devices. And I’d wake up on these couches, bleary, pained, and vaguely ashamed. Often I’d just tiptoe out as soon as I’d figured out where I was and how to reach the nearest T station (TIP: look for a pile of phone or cable bills for an address, kids!), and figure out the thank you and/or apology strategies after the fact. I don’t look back on my twenties particularly fondly. I did a lot of cool stuff, managed to get two degrees, and I think I thought I was having a good time. But in the 800-watt glare of sobriety, reality, and my forties, I see a young woman running herself ragged, trying too hard, and making herself sick.
And I KNOW that I don’t live that life anymore, and I KNOW that it’s my own couch I’m sleeping on (or attempting to sleep on, anyway), and come most dawns, I don’t have anything to apologize for. I just don’t like to wake up on my couch. I don’t like to start the day from my couch. It’s not natural.
On the left is me, early 1971. I call her Done Baby Lisa.
I’d like to believe that my 6-month-old self was already DONE. WITH ALL OF IT. I have often joked that I came out of the womb old, cranky as hell, and wanting to watch “Wheel of Fortune” because I have HAD IT since before I could even express exactly what that is. What it is that I’ve had it with. Or something.
My mother gave me some backstory to the ’71 photo. The photographer, in her words, was a “twit,” and I, even at a mere handful of months old, was “able to sense it.” So even my own mother knows how DONE I’ve always been.
On the right is me, yesterday. Done Baby Lisa and I are one.
Over the years, I’ve attempted to curb my, um, “DONE-ness,” as it were. I have come to understand, from various workstudy students and interns with whom I’ve worked over the years, that I am kind of scary. At first. Then I’m just cranky-but-loveable. But I really don’t like to think that people think I’m scary. I’m really not. I’m just….armored.
The problem is that I’m just not the type to write gratitude lists, meditate, do hot yoga, or tepid yoga, or any kind of yoga, really. I hate most “folk” music, herbal tea, and those fakakta angel coins they keep in dishes near the cash registers at gift shops. I live in a perpetual state of mild irritation. Thankfully, my nearest and dearest find it amusing.
I have a bunch of playlists on my iPod, at the ready for when I need Done Baby Lisa to be a little less…done. Sometimes New Wave/New Romantic does the trick. Sometimes it’s darkwave, classic goth…maybe a little mid-to-late 80s industrial.
TANGENT: A few years ago I got into an argument with Mark Hosler about a lot of the music that I hold near and dear. He maintained that much of it just didn’t want to make him shake his ass. In fact, he ended an email exchange with me thus: “THE EIGHTIES HAD NO ASS.” And I remember sitting there sputtering at my screen, so outraged that I didn’t even bother with a response, so I’m guessing that Mark still thinks his word is final. It isn’t. Because I was listening to “The Politics of Dancing” this morning, and damned if it didn’t make me shake my ass, albeit in a 40-something white woman way. Ass, or lack thereof, is subjective. You just don’t make sweeping generalizations about ass. Don’t make me trot out Done Baby Lisa.
You know what I did not too long ago? I made a MIX TAPE. My friend Brendan was recovering from surgery, and – being the caretaker that I am and all – I thought it would be a nice, antiquated, quaint thing to do. No matter if he doesn’t have anything to actually PLAY it on. It is damn hard to find blank cassettes. Actually – no: I was able to locate them fairly easily at CVS. It’s just dealing with the LOOKS that people give you when you’re buying them. When was the last time you made a mix tape? If you’re like me – it was probably around the turn of the century. I’d forgotten how much concentration goes into making one of these. The timing of it all. Wanting to fill all 90 minutes. You got just a little bit of tape left, like maybe 2 minutes, so you throw this on there:
It’s an investment of time and energy and knowledge, making a mix tape. It’s not the same as pulling together a playlist, where you’re not limited and you don’t necessarily have anyone but yourself in mind. Tracks have to be carefully selected. Because you can’t “shuffle” a mix tape. It tells a story, it sets a mood. It gives reason to hope, then dashes your expectations.
Is it meditation? I guess it is. I should make them more. Make one for Done Baby Lisa.
I spent part of Sunday with my arms plunged deep into my mother-in-law’s washing machine, because my fingers were small enough to dig underneath the agitator to fish out about a quarter of a can’s worth of cat food.
Why was it in the washing machine? Oh, grasshoppers – ours is not to question these things. We live our lives straddling the line between “real life” and “Alzheimer’s life,” where the washing machine becomes the trash can, a can opener becomes part of an art installation, where used paper towels are to be lovingly folded and saved but an antique menorah goes into the trash.
Most days, we can navigate the randomness of living with someone with Alzheimer’s. We truly have to be in “One Day At A Time” mode around here. We try very hard not to say, “Well, next year she’ll be someplace where she can be looked after, and we’ll be able to do this, and this,” because the fact is we don’t know that. There are no guarantees in this life. It could be another year, it could be another three years. So we keep things, as much as we are able to, in the day.
I feel like all I talk about is Alzheimer’s, these days. I can’t help it; it’s kind of my LIFE right now. And I’m not even shouldering a quarter of what Kevin is bearing. I have known from the get-go that this is a progressive, degenerative, and fatal disease. 3 years ago, when she couldn’t drive anymore but could still go to the grocery store with us, I remember thinking, “This is kind of a pain, but I need to roll with this right now, because it’s going to get worse. Much worse.”
You have no idea what any traumatic situation is truly like until you’re living it.
I vent about it here because I can. Increasingly, I’m finding it more and more difficult to talk to people who aren’t going through something similar, simply because they don’t understand, and I find myself trying to explain what cannot be explained in any kind of succinct way.
I’ve always hated those xojane “How Not To Be A Dick To Someone Who ______” pieces. Mainly because of the title. People, by and large, aren’t dicks, or aren’t meaning to be dicks. But sometimes we say the wrong things without realizing it. I know that before I became a caregiver, I said most of what I’m listing below as things NOT to say, and I cringe when I think about it now. So, take this in the spirit in which it’s being offered. Here’s what not to say to a caregiver:
Why can’t you just put her in a nursing home?
We get this all the time. The short answer? It’s not that simple.
The longer answer? Medicaid will not pay for a nursing home/facility unless we can prove that it’s “medically necessary.” If we were to put her somewhere now, and pay for it entirely out-of-pocket, we would burn through her savings in pretty short order, and be right back where we started.
She is still able to more or less dress herself. If you hand her a toothbrush with toothpaste on it, she will brush her teeth. She cannot prepare meals for herself, but she mostly remembers how to use a knife and a fork when we make her something to eat. She is not incontinent (yet). She makes her own bed. Because of all this, she is not “medically eligible.” Putting cat food in the washing machine is a nuisance, but it does not warrant a nursing home.
So, please, stop asking this. It makes us feel bad, and even more stressed out, and like we’re not doing a good enough job.
You look/sound tired.
Thanks! We are tired. We are both crazily, brain-wastedly exhausted, and that’s even with the help we’re currently getting from family and aides.
We wake up, we make her breakfast, we “do the rounds” of her apartment to make sure there is nothing in the washing machine that shouldn’t be in there (like, you know, cat food), or anything else that could be potentially be a hazard (and at this point in her illness, that can be just about everything that isn’t nailed down). Then we work all day, come home, follow up on anything that needs to happen (based on the notes her aides leave), make her dinner, get her to take her pills, get her into her pajamas, and THEN think about dinner for ourselves. And I’m not even getting into the morass of paperwork that still needs to be finished, to make her eligible for this service or that service, and to get her financial ducks in a row.
So, yes, I’m sure I look/sound tired. Could you maybe compliment me on my hair instead?
You really should be doing this/that/the other thing at this point.
Believe me when I say that we KNOW what we should be doing, but because of financial and time constraints, we’re not there yet. Please don’t make us feel guilty about what is falling between the cracks.
Can’t you just put on some old movies/music and let her sit quietly?
Perhaps these things work with other dementia patients. It doesn’t work with my mother-in-law. In her well life she couldn’t sit still, and always had to be doing something. This is now exacerbated with her illness. Pre-existing anxiety issues plus Alzheimer’s is a very trying combination. She can’t sit for much longer than 15 minutes in front of a movie, and while she likes to listen to music, it doesn’t keep her from wanting to pull everything out of the china cabinet to “rearrange” it. We’ve tried, and are continuing to try, all kinds of things. Music, games, puzzles, repetitive activities. Some of them work. A lot of them don’t. Alzheimer’s symptoms vary wildly from person to person, and affect personalities differently. What works for your aunt/grandmother/co-worker’s mother may not work for Mom.
God/The Universe/The Flying Spaghetti Monster doesn’t give us more than we can handle.
I understand that this is supposed to make me feel better, but it really doesn’t. It’s very hard to look at it that way. Could it be worse? Of course it could. But when you’re in the thick of it, you don’t really have the energy to muster perspective.
You should get out more.
Do you have kids? If you do, then you understand how difficult this is. If you don’t – I’ll explain. Of course we should get out more. But this entails securing someone to sit with Mom, because she cannot be left alone. I mean – at all. Not even for a couple of hours. It’s also not really possible to bring her with us, a lot of the time. She gets very anxious in unfamiliar settings, even if those settings were places she used to go.
Frequently, any kind of outing involves our checking weeks, and sometimes months, in advance to see if a family member can stay with her or have her stay over, or if we can get one of her aides to agree to a weekend or overnight shift. If it’s something I want to do, a lot of times I have to take one for the team, and turn the invitation down. Sometimes one of us can go do something, while the other stays home with Mom. But right now, there is no such thing as a spontaneous outing, or even a planned outing in some cases, for the both of us. We appreciate being invited to your party/show/event, but please understand if we can’t make it.
Let me know what I can do to help.
This is the toughest one to address without sounding like a total jerk. This offer always comes from a genuine, sincere place. I know this. But it puts one more thing on our ever-growing list of things to do: Call mortgage company again, call lawyer again, clean cat food out of the washing machine again, tell friend/family member what they can do to help. We’re not prepared to say right off the bat: “Great! Can you do this, or this?” We’re frequently not in a place where we even know what we need, and to be honest – we’re often afraid to ask.
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Oy. I really don’t want to sound ungrateful. I know that people want to say the right thing. Here are some things that we do like to hear:
You’re doing a great job.
Even if we sometimes don’t believe it ourselves, we love hearing this. Really. So much of the time we are second-guessing our decisions, or feeling shitty because we feel like we’re so far behind on what needs to get done.
I’d like to bring over a meal/sit with Mom for a few hours so you can go out/do some research on facilities and services for you.
Not too long ago, a chef friend of ours left us a big bag of food on our front porch. Stuff that could be frozen and heated up on those nights when we were too tired to figure out dinner on our own. It was such an amazing and generous thing to do, and not something that we would have thought of on our own.
A simple offer to do something, no matter how insignificant you might think it is, means the world to caregivers.
Do you want to talk about it?
A lot of times, we would just love to unload on someone who’ll just listen without judgment or platitudes. Even if I sound rant-y and horrible. You don’t have to understand what we’re going through to just be an ear.
I really have no idea what this is like for you, but here’s Banthapug.
Banthapug makes everything better, even if it’s only for a couple of minutes.
My father, an accountant by trade, voted for John Anderson in 1980. He has always defined himself as a “fiscal conservative,” but socially he’s quite liberal. Very pro-marriage equality, believing firmly that “small government” means just that. So I’m not entirely sure you could call him a “Rockefeller Republican.” In fact, he campaigned his big ol’ heart out for Hillary Clinton, in FLORIDA, no less, so that’s also testimony to his chutzpah. An Air Force veteran, he was employed for many years by the USPS, toiling the graveyard shift, so this is a guy who understands the meaning, and value, of hard work.
Here’s what my father says about the Boston Herald: “No self-respecting FISH’d be wrapped up in that paper.”
Now, my mother-in-law was sort of the same way. Very cautious with her money, very responsible. She subscribed to the Boston Herald for many years, primarily because the comics were better than those in the Globe. Until she got Alzheimer’s. She tried, she really did, to keep up with things via the newspaper, but ultimately relied on us, her caregivers, to let her know what was happening. Reading is a struggle for her. And so we cancelled her subscription, or – rather – we had to tell you numerous times to cancel her subscription, and, eventually, the paper stopped arriving on our porch.
Until a few weeks ago.
We have a phone set up in our apartment downstairs (we live in a two-family home). It’s connected to her landline. This way, we’re able to see who has called her. We want to give her as much of a feeling of dignity and/or normalcy as possible as she continues to decline, so we didn’t take away her phone. She still gets calls from her other son, her granddaughters, her friend Ruthie who takes her out every month to get her hair done. She also gets calls from you. We can see this on the phone we have downstairs. We can only assume that someone in your subscriptions department gave her a call to see if she wanted to subscribe again. My mother-in-law, perpetually baffled yet wanting always to be polite, probably just uttered some combination of words which could be interpreted as an affirmation.
And so we explained to you, Boston Herald, what the situation was and why you really needed to stop having the paper delivered here and why we were not going to pay the bills you’d been sending to her. And so the papers stopped.
So I’m flummoxed as to why we got ANOTHER bill this afternoon. I’m afraid we were a little less polite than we were before. I thought of my beloved father as I swiftly jotted across the front of the bill:
NO SELF-RESPECTING FISH WOULD BE WRAPPED UP IN THE HERALD.
You’ll be getting it in a couple of days. Just fair warning.
Sincerely –
Lisa McColgan
PS – your comics are still better than the Globe’s, though.
Lisa McColgan 