Nude Authorship

One of my biggest struggles in writing is a desperate fear of exposure. It’s a very personal act. All I have to draw on is what I’ve lived, experienced, and perceived about the world around me. I can step outside myself to a large degree, but what’s on the page is still coming from inside my head. I am responsible for these words.

I think the best analogy to get at the heart of this might lie in this little embarrassing story. So, you know the Evil Dead trilogy, right? You don’t need to even know the premise to understand this, actually. I just feel better believing you’re at least aware of its general existence. All you need to know is that the protagonist is a named Ash and he is employed at a store called S-Mart. The store’s slogan is “Shop smart – shop S-Mart!” I’d seen the series multiple times prior to a phone call, possibly with one of my sisters, where Army of Darkness (the third movie in the trilogy) came up. I quoted that line and suddenly, I got the joke of it. S-Mart spells smart! Never having seen it written down and taking it as such a throw away line… I don’t know… I just never stopped and thought it through. So embarrassing, right? It felt as if, for years, I’d completely misunderstood a fundamental aspect of life.

I’m afraid of stumbling upon those moments in a very public way and not realizing it until other people point it out to me. I don’t want to look like a ditz. But more than being laid bare and proven stupid, I fear that, stripped down, you’ll see the ugly and it’ll dawn on me that… hey… that IS me. That ugly is my core.

I’m terrified that I’ll come off as a selfish, entitled asshole, and once those traits are reflected back at me from the page, I’ll find uncomfortable truths in what I see. I sometimes wonder if that’s really Lena Dunham’s whole thing. Maybe she’s afraid of that, too, so by purposely putting these deeply flawed, intensely dis-likeable characters out there that reflect the most negative and generationally stereotypical way she could be received, she’s able to somehow free herself from this trap. Maybe once that’s all out on the page and/or screen in earnest, it’s easier to dissect the flaws in that self-perception and ultimately distance oneself from that image, internally if not in the public eye. It’s a brutal, divisive, incredibly bold approach to the problem. It’s also brilliant. I find strength in it. I imagine it’s refreshing to look at comments regarding her characters and be able to say, “That’s sometimes how I picture myself, but clearly that isn’t me, or there’s a lot more to me, because I still have friends that aren’t monsters, which, from the looks of it, is more than I can say for Hannah.”

The challenge lies in seeing the black and white extremes that exist in my head for the unrealistic caricatures they are. The world is way more grey.

Out on the Town with our Minds out to Lunch

Working as an in-home caregiver doesn’t mean my clients and I never leave the house. Part of my job is to help them stay connected to the outside world through walks, store visits, doctor visits, and visits to fast food restaurants where they’re likely to run into old friends. As such, we wind up interacting with many people in customer service jobs who are undoubtedly busy with their own stuff and might be unsure how to deal with our particular brand of crazy. Maybe that’s you? Even if you’re a nurse or medical receptionist, perhaps you’re not trained specifically in geriatric issues or aware of what it’s like on our end. It’s not especially complicated. Just slow down and really listen for a minute.

So we’re a bit late. Please forgive us. Getting ready alone would’ve taken me at most ten minutes, so I budgeted us an hour. I had to get an adult-size toddler fed, dressed, and to the bathroom. Everything centers around routine because if it didn’t, her world would crumble into utter chaos. But she might get stuck on a particular step of a task or become agitated or any number of odd, unforeseen things might crop up. We could be taking things as slowly as is feasible, and she’d still feel rushed some days. Please don’t look at me in disgust because her shirt buttons are misaligned or her hair is uncombed. Sometimes she still wants, insists on maintaining little bits of independence and it’s easier not to fight it as long she looks halfway decent and is fully covered in clean clothes. Don’t assume I’m incompetent. Ten bucks says there’s no way you could’ve gotten her here quicker or looking more presentable.  Sure, we’re ten minutes late, but we made it through all the essentials without a fight, she’s semi-lucid and I’ve got the paperwork prepared, so stop judging us. If I was a mom with two or three messy kids in tow, would you have the same attitude? Because whatever your answer to that, you need to put yourself in other people’s shoes more often and realize what’s easy for some is like scaling Mt. Everest for others.

Uh-oh – you either just processed a ton of paperwork only to discover my client’s already on file or we went in thinking she was on file and it turns out she’s not. I am so sorry. Déjà vu is a big thing with dementia, weirdly, in places where it would make no sense, like first-run daytime TV shows and news programs mentioning events that are unfolding in real-time. It gets really complicated when it comes to discerning whether a care client has been to a particular place or seen a particular physician before. She’s been alive half a century longer than me and none of her personal records are sensibly filed and easy to locate. She may remember being someplace before without being able to provide any details of the place. Is that memory real or imagined? Way too often, receptionists immediately start getting frustrated by the uncertainty, as if I should’ve walked on the scene knowing these things. Just please, look us up on the computer the first time we talk on the phone, or maybe check the yet-to-be-uploaded old files. You might be the only one left holding clear records of whatever issue we’re here about. It might seem ludicrous that no one on my end can provide clear answers or insight, but that’s where I’m coming from and if you work with me now, you won’t have to deal with more headaches down the line. Are you swamped in the office and unable to take a long call right now? That’s okay. I’m flexible. Schedule us and call me back later so we can work this out before the appointment without putting undo stress onto your shoulders or mine.

Maybe you’re a store associate and my client’s looking for a product I haven’t heard of. Please, bear with us. The details are sparse, strange, and far-flung, but she’s not going to give up on this easily. Which brings me to a another issue: fixations. Believe me, this is infinitely more frustrating for me and for the family members than for you. We’re dealing with a  person no longer capable of remembering when she last ate or that ringing means answer the phone, yet she’ll drone on and on about the same issue every time she talks to you for days on end. Sure, distraction helps, but it only goes so far if I can’t get her out of the environment that reinforces the idea long enough to break her out of her rut. That’s where you, dear store employee, come in. You are wearing a uniform. You could be a wearing a baseball uniform or a barista uniform and it wouldn’t matter. The point is that you broadcast authority to my client. She won’t believe what I say, because I obviously know nothing about this store. But you, you MUST know what she’s talking about. Humor her. Look the product up on the computer using her details, take us down the aisle where it “would be if you had it”. Tell her you must’ve stopped stocking it. Commiserate. It doesn’t matter if your store hasn’t stocked the product in thirty-five years. It doesn’t matter if the product couldn’t possibly exist. All I’m asking for is five minutes and for you to treat my client like any other person, like she’s her old self. If you don’t, it might take me an hour to convince her to give up and go home. She might throw a tantrum in the aisle. It’s important to go out regularly and get exercise with the support of a shopping cart in an area that is relatively unchanging and comfortably well-known. That’s why I didn’t come alone. Usually, we do fine. But occasionally, we have bad days and this is one of them.

So, down to the nitty-gritty…

Three basic rules for the customer service peeps we interact with:

  1. Be patient. If you’re too busy or under too much pressure, try to arrange a better time or get a colleague to take your place in working with us.
  2. Treat my client like any other adult human being. Maybe nothing she’s saying sounds rational or lucid, but that doesn’t mean she doesn’t deserve your basic respect or understand that you’re being rude and condescending. Quite the opposite. Even if she’s really out of it today, she will pick up on your mood and tone, and take your frustration personally. Suddenly, it’s her fault you’re upset, she doesn’t know what she did to cause that, and those two things combined make her more upset in a vicious cycle.
  3. Understand that people you meet might be dealing with invisible problems. Regardless of appearance, of apparent age or beauty or whatever, please don’t assume the worst or treat us like we should know better, act better or otherwise rise to meet your physical or mental expectations which might be, for us, wildly unreasonable. Accept us as we are. Catch the curveballs we throw. Don’t judge or gossip while we’re still within earshot. Do the best you can.

And one huge tip to make things easier:

Don’t bombard a dementia-afflicted person with new questions or clarifications. Ask one question using simple wording. Wait forty-five seconds for a response. They’re still processing, forming an answer. If they don’t respond, repeat the question exactly as before. When you jump in right away with “helpful” clarifications, you’re really just adding more information that must be processed and ultimately, overloading them. I’ve heard many sources say it could take the person up to around ninety seconds to fully process your request. So during that time – no new additions. Wait and remain engaged.

A Past Reflection on Being an IHSS Caregiver

This is sort of my overview. It’s kind of long, so bear with me as we step inside my head inside the system.

Light filtered in lazily, here and there. Endless craft organizing bins, stacked to the ceiling, walled in the space, looming unsteadily over an inner circle of chairs, none of which sat empty. Collectibles, stuffed animals, clothes, and knick-knacky crap covered every one to some degree, so that the largest room in the entire house sat unusable, an abandoned repository of bits and bobs that would never amount to anything, each representing a project, a dream, subsumed by grander, more urgent projects and dreams, a matryoshka of faded ideas now biding their time until the next good earthquake. Taunting the geological gods. Begging, maybe, for the chance to escape and in the chaos, make news, be something, see the light of day for the first time in decades.

And in the center of it all, me, gazing around in wide-eyed wonder.

Some clients, they lie. They rip you off. They break your heart. So why am I still here, in the midst of this dust? I’m here for who they were or almost were or wish they were. I’m here because they all matter, even if the whole world has forgotten. Every little inch of everything that towers over me tells a story. All those stories stack together into a life, broken down, memories stashed here and there, the once-was filling in the never-will-bes like grout between tiles. There’s no empty space. No room for mold and regret anymore. It’s almost perfectly full.

I want to write it all down, to shout to the world, “Hey – this was Bob or Bill or Sally or Linda – and this is what they did. These are the contributions they made, the roads they paved that you walk on each day, oblivious and ignorant. Where the hell would you be without them?”

They tell me their stories, and I listen, if only because no one else seems to. We go out and talk to people, and eventually, the other people and I drown out the voices of my clients. These clients only look back, so their talk is one-sided. They can’t keep up. No more hard drive space to spare. It’s all temp files and then those get cleared to make room for some more, and while we speed ahead, they’re stuck processing, sorting, staring ahead blankly, lost somewhere five minutes or five hours or fifty years ago.

The world moves so fast. I want to slow it down for them, smooth it out, make it make sense again, but even I can’t keep up. They’re slipping, slipping, always slipping. I grab onto greased pigs for a living, greased pigs floating downstream in a river. It’s a hopeless pursuit, any way you spin it.

When I can’t catch hold long enough, they get angry and frustrated. They hate me. They rail against me, kick me out, abuse me. Sometimes, they have someone to talk some sense into them. Someone better at catching hold of bucking hogs. Someone they trust. Mostly, though, they’re alone, clinging to the stacks around them. It’s about self-preservation, survival, or maybe just raging one last time at the whole, stupid world.

But in the eyes of the system, they’re all rational, independent people to the last. They sign the forms to this end, so it must be true. As far as the bureaucracy is concerned, this is all one big business, an endless sea of happy little employers and employees, self-governing, spinning our wheels in perfect harmony, going nowhere while somewhere in an assembly hall, our collective fates are mulled over and tossed aside, year after year.

I don’t know where to start. I assume the workers who come before me did the best they could, too, regardless of what my clients say. I just think their tracks get quickly covered up by the still falling snow of crumbling lives. Everything always needs vacuuming. The dishes are never done. Sometimes on Tuesday it’s impossible to see back through to whatever I did Monday.

I leave my children unattended every evening. They’ve got oven access, food to burn, pets to neglect, rags to cut up leaving a confetti trail of threads across their carpets, drinks to spill, important items to lose track of, pills to mix up, glass to break. What else can I do but abandon them to their fate? Once a year, someone they barely know comes out and asks them a million questions. The interrogations can take hours. They watch nervously as this near-stranger scribbles things down on a clipboard. Then, a few weeks later, the verdict is in. Still good alone with however many hours assistance in the following areas. And that’s it for twelve more months unless something really catastrophic happens, in which case it is not the state’s fault, officially. In any case, the client’s eventual assisted living care is the federal government’s problem… usually. Probably.

Any company providing goods or services to those not deemed worthy is subject to an FBI raid, so theoretically, they’re panicky and hyper-observant. But only to a point. Thousands upon thousands of people live within this system. More join the fold each day. The social workers are beyond overwhelmed. They just want problems resolved fast. Who cares what slips through the cracks in the process?

We all try our best, but it’s exhausting from every angle. When it blows up in our faces, we just kind of shrug at each other. Sympathetic ears are lent. Forms and records are updated. And we move on without ever fixing anything, leaving the pieces for someone else to pick up. Someone who didn’t witness or hear anything about the prior disaster.

I go in blank. I am told many impassioned, biased things. I never see papers or records or objective accounts of those before me because those things don’t exist.

I’m bad at picking up on and correctly judging clues to the truths behind the tall tales of terrible care giving.  I have to give them the benefit of the doubt on most things if I’m ever going to be employed by anyone in the system, so generally, I throw up my hands and plow headfirst into the maelstrom, hoping for the best.

I’ve been used. Screamed at. Forgotten.

But I’ve been hugged, and smiled at, and adored. I’ve become the keeper of all confidences, lifeline of lifelines. I’ve been a friend when no one else was. I’ve been praised, doted over, loved.

I know more deeply the greatest truths of life and death than most people my age, little secrets of the dying and ancient, harsh realities hidden away from those going to work each day in offices, schools, labs, and cubicles. The doctors and hospital nurses, they get glimpses. They know the immediate things. They see final progressions in time lapse format. I see them four or five or seven hours a day, week after week after week, until I can’t see the little fragments of decline anymore as they break apart. I’m shocked out of my complacency when an old, simple task proves impossible, and everything comes rushing back into focus around me. How’d we get here? Could I have been doing more? Why can’t I ever hold back the tide?

I’m racing around, looking for answers. For hope. But it all falls away in this profession. The best just fade as I watch, helpless. The worst explode and fizzle and leave me reeling.  No big miracles. No reassuring epiphanies. Just a march toward some kind of ending, in fits and spurts, and me, marching alongside, ever so slowly, matching pace, eyes nervously set on the uneven ground.

It’s raining rain!

This is worthy of a happy dance for two reasons:

1. Rain means a break in the endless construction. They managed to get the weatherproofing done before the heavens opened up, so no worries there. I am basking in the soft plink of raindrops hitting my building, unimpeded by annoying porch railings, gutters, drain spouts, and all that standard house crap that is temporarily absent. I’d worry about flooding, but it’s only pouring by California standards. We’re talking a quarter inch over twenty-four hours – enough for everyone to panic and fly off the roads as if beset by an apocalyptic meteor storm, but not enough for flash-flooding unless you’re living in a ditch or on the beach. So, probably okay.
 
2. I can finally relax and let go of the fear that the smallest static contact with a doorknob or appliance will spontaneously set the entire county ablaze. This is a common California fear (citation needed), particularly down south, where the scenery can get, well, pretty crunchy. Except for the damn ice plants. What is their secret? And why aren’t we doing a better job of harnessing it? The northern plants can get by on fog in a pinch, but lately even they’ve been feeling the strain. Not today, though. Today, we’re all breathing a little easier. Enjoy the free CO2, shrubs and firs. It’s party time up in here.

It’s raining nails! Hallelujah, let’s get inside!

The posts are starting off sparse here in the land of nickels, mostly because I haven’t been home much and don’t care to tote my laptop around via bicycle all the way to the local coffee place. No, it’s not my internet. That’s fine. They’re re-siding the apartment. It’s very loud and constructiony. My porch railings have been reduced to a naked framework of two-by-fours. The hammering is endless, which I don’t understand on days when they seem to just be doing the flashing (that’s… a thing… with walls – they’re not all just standing around in trench coats, although, that, too, would be confusing and alarming, especially if still combined with the hammering).

Hopefully, this building will be done soon. I can’t remember what quiet is like.

Oh, and stuff like this happens: I’m in here the other day and I’ve put in a maintenance order for something unrelated to the construction. I hear what sounds like a knock on the door so I open it, and there’s a guy on a ladder with one side leaning against where the door was. He’s a few rungs up. We just stare at each other in surprise and he says “uh oh”. He jumps down. I try to apologize and explain the situation from my perspective, but it becomes pretty clear he doesn’t speak English and my Spanish is extremely limited to mostly Tijuana slang, random exclamations, and standard niceties, so eventually I just closed the door and gave up. Now I’m scared of accidentally killing someone by just going about my daily business because my baseline level of obliviousness is freakishly high. The moment felt so slapstick-y, though, like Benny Hill but verging on a horror movie, which now that I’m thinking about it could potentially be amazing, just not in real life.

Wish me luck weathering the storm(proofing)!

Soft Rocking with the Elderly

I spent an inordinate amount of time around nursing homes as a child. My oldest sister worked as a dietician at a few of them over the years, perfecting the fine art of pureeing foods that should never be pureed, on a massive scale. To this day, she makes one mean creamed corn. The homes held employee family events for every major holiday. Typically, six or seven employees would bring their adorable preschool-age children, and my sister would bring my brother (at the time, an adorable preschooler) and me (four years older than everyone else, except for one other girl, with whom I developed one of those default situationally-forced friendships that turn into awkward acquaintanceships in adulthood but weirdly last forever even though neither party wants or intends for this to happen). Yet they’d always set up elaborate Easter egg hunts, haunted houses, and Santa’s cottages as if expecting a crowd of hundreds.

We were there primarily for the residents to ooh and aah over, surrogates for the family that had invariably forgotten them. Some of the events would happen completely separate from the residents, but then all the kids would get ushered down the halls to say ‘hi’ to everyone, which was terrifying and sometimes took hours. The smell of urine and industrial cleaners burned my nostrils and made my eyes water. One woman got really attached to my brother and called him “Vera” and practically bear-hugged him to death every time we stopped by. Half of the people either couldn’t hear or couldn’t communicate coherently. Half of them lacked teeth. Leathery, spotty hands grabbed at me from all directions. Picture an Are You Afraid of the Dark episode scenario, if you will. Sometimes, nurses had to intervene to make the residents let go of us when it was time to leave.

Quite understandably, I developed a strong early aversion to the elderly. However, I also sort of gave up and decided that being smother-hugged by dozens of elderly strangers four times a year was an inevitability of life, something that all children simply had to endure as a matter of course.

A lot of unrelated stuff happens for a very long time in this convoluted story after my sister moves on to a non-nursing home job. Let’s fast forward like fifteen years and pretend this paragraph makes for an adequate transition.

So, um, I’ve been an in-home care provider for the elderly for the past four years! Surprise! I mean, I guess it kind of makes sense. I came into this already desensitized to all the gross parts, and I know how awful nursing homes can be and how important it is for these people to maintain what shards of independence they’ve got left. I also love the stories they’ve got to tell (cue Disney music and awwws). And, much like zombies, the elderly aren’t half as bad taken one at a time. It’s the hordes you have to watch out for.

I’m taking a break from the one-on-ones, though, now, for at least a short while. This blog, though, is going to contain a lot of stories about my home care experience, in all its moth ball-y, afternoon talk show-filled, bland-tasting glory. I’m a magnet for improbable occurrences and miscellaneous inexplicable weird shit, as well, and I’ll try to cover all that as I’m able. Maybe more often as time goes on? I have no idea. Mostly, I think we’re all here for the vague high achieved from too much time with those moth balls, right? And weird garage-sale sourced gifts. And Rod Stewart’s smooth, smooth voice played at an ear-shattering 120 decibels for hours on end. If that’s the case, I promise you won’t be disappointed. Just go with it.