Secondary

I love my job because….

Actually - honestly - it is really difficult to love anything about my job. The person I work for hardly speaks to me, so I am constantly left guessing what he needs or wants and there’s never any recognition of a job well done. If I get a promotion, it’s only after my father either hands over his responsibilities because he can no longer continue or after his death. Can’t say I look forward to the circumstances of that promotion. There’s no benefits or overtime for this 24/7/365 job. Actually, there’s not even any real extra workers. And folks love to complain about having to kiss a customer or boss’s ass? How about wiping it? Yep - part of my job. Welcome to the unglamorous world of caregiving!

I am a secondary caregiver for my younger brother. I have helped take care of and watch after him since I was about 7 - around 23 years to date. Long before I started getting paid for this, I was learning the trade in a pretty on-hands way.

Baby brother was born 3 months premature. An emergency C-section was needed, as he was killing my mother, and she was killing him. He weighed 1 pound, 6 ounces at birth, and no one ever gave an estimate on his life expectancy. He has a long list of disabilities: cerebral palsy (limb muscles fire and shake, burning extra calories), scoliosis (unnatural curvature of the spine), and he is unable to walk without the aid of leg braces and walker, though usually he is carried or in his wheelchair. His mental capacity is estimated to be around that of an 18 month old and has impacted - among other things - his speech. And he is legally blind. There’s probably more, but I mostly learned about such things from overhearing conversations between adults growing up.

He also used to have seizures. He was eventually cleared to stop taking Tegretol over a decade ago, but I still recall the dosage and times we would give him his medication when he took it for over a decade prior: 1 ½ teaspoons at 10 A.M., 4 P.M., and 10 P.M. One of my earlier memories is of my brother having a seizure, and my father holding him tightly to prevent him from getting hurt while yelling to my mom that he was having a seizure and to call someone. And I thought this kinda thing was normal growing up.

Also “normal” meant physical and speech therapists either coming to our house or being driven to. I still remember one of his long-time physical therapists, named Linda; she gave me this little kitten plushie that I've held onto all these years and sometimes she would let me also ride her horses used in her therapy when we drove up for my brother to do so. Frequently I would watch her while she worked with my brother; there wasn’t much else for me to do at 6 years old.

All that therapy and the multiple surgeries my brother underwent really added up, and so did the costs of daycare for two young children; one with a lot of disabilities. Eventually, our dad became a stay-at-home dad. He also worked on cars in the neighborhood; more just something to do in the hours when my brother and I were at school. He only charged labor, and it became a way to earn a little extra cash and keep dad doing something. The older we got, though, the more projects he took on, and the more I was required to look after and help care for my brother.

Summer breaks were largely spent indoors with my brother while dad did yard work or car work. I was unhappy with it; it didn’t seem fair how much I had to take on as a kid. But, with my sibling situation the way it was, I was also socially awkward - I didn’t really have a sense of how I was supposed to act around classmates and was basically a loner and outcast for the majority of my school years. As such, as much as I wanted to be anywhere else doing anything else, I was stuck feeding my brother, checking his diapers, giving him medication, and getting him off the bus after school during the school year; there wasn’t really anyone to hang out with. That said, by the time COVID-19 hit, I was pretty used to staying indoors anyway, so… win?

I don’t think my parents intended for me to take on as much as I did, but gradually, slowly…

...I resigned myself to growing into an “old maid”. I was always going to be needed there and was unlikely to leave. Between always being stuck around the house and the list of responsibilities that came with my brother, I held little hope I would find a lasting relationship. Who would willingly walk into this? I was born into it; molded by- oh, wait, that’s a movie line, isn’t it? Bugger. Anycase…

There’s little doubt in me that growing up the way I did had impacts on my own growth. After work, cooking, medical appointments and any therapy sessions, it was no wonder that my parents were tired. Mom had a long, taxing commute through Denver traffic while dad did his side work, handled yard work and a decent amount of the cooking and all the odds and ends around the house. I can’t even count how many times I had to stand and hold a flashlight or loose screws/bolts/washers, as dad fixed almost anything around the house himself. There was always something that needed to be done, and there wasn’t much energy left for me and my needs at the end of the day. Of course, I also didn’t want to impose; I saw how hard it was for my parents to handle the challenges of raising my brother and often didn’t reveal to them that I was feeling left out or stressed out. I assume this is largely what lent to many years of insomnia as well.

To be fair, after the demands of both school and home, when I was up in my room for the night, I was somewhat content. I was still stuck inside, but at least I had a little time to myself. I still often wake in the dark of night to listen to music and pace - it was what I did when I couldn't sleep, and about the only time I could think uninterrupted. Now, it’s not limited to the dark hours, but is still a required part of my day to feel a little more relaxed. My day feels incomplete until I get my 10,000 steps in and think over the course of those 3 hours, and I quickly get restless if I am unable to do so for too long. It helps me think: about my life, my stories I’m working on, issues past, present, and future….

Because it is stressful to take care of someone like my brother. He can’t communicate, so if he gets upset, he grinds his teeth and has been known to grab and pinch in anger. My grandmother found that out the hard way; my brother ripped out her earrings from her earlobes when he was young, and she sports torn lobes to this day. And why he is upset most of the time is equally baffling. Is it a wet diaper? Does he not feel well? Surely he must get headaches too sometimes? Is he understimulated? It’s all guesswork.

To be fair, my baby brother is generally in good spirits. He’s always enjoyed tapping on things - when we were both very young, he would crawl into one of the bathrooms and tap on either the dryer or the bathtub, depending on the bathroom. For years, his toy of choice has been a large, plastic cop car. Despite getting him other, newer ones, he always goes back to this one; we guess he likes the sound of it better as he taps. It’s in rough shape now, as almost all the paint has been scratched off, and we don’t even recall the number that used to be on the top of it after all this time (we think it was a number 88). We’d love to find another one to replace it, especially as more and more of it breaks with time, but with it being made over a decade ago… We’ll just have to hope it has many more years enduring my brother’s endless tapping. He’s going to be heartbroken when it finally goes.

Baby brother also enjoys getting his hair brushed or head scratched. He may have drawn the short straws for many things in life, but one thing cannot be denied; my baby brother has got some envy-worthy hair! He’s sported everything from buzz cuts, to long hair with bangs, to a mullet (yep, Joe Dirt style). It’s hard to tell if and when he wants a cut; he loves his hair brushed, but there’s definitely days where all that hair is a bit too much, and I’ve seen the frustration build on his face while he tries to move some pesky strands out of his way.

Most of his enjoyments stem from things at home: brushing his hair, eating full meals every few hours (with his cerebral palsy, it is estimated he burns 3,000 calories a day - about 1,000 more than the average person) and nice, long baths. But my brother’s absolute favorite thing to do is go bye-bye; he loves car rides. Or train rides. Basically, if it rolls on wheels, he’s game. We think this stemmed from holidays where mom’s side of the family showed up when we were kids. He was easier to carry around then, so they would take both of us with them when they went holiday shopping. He’s not so easy to move around now….

...And he won’t be in the future. The worst part of my job is the unknowns of the future. I know the daily routine - I described it very closely in “The Caregiver’s Routine” for a writing challenge. The ending was fictitious, but the rest was based in reality. In fact, the reason why caregiving was featured in that piece was because I had started having insomnia again after years because of insecurities for my brother’s future.

For nearly seven years now, I have been in a relationship; something I never thought would happen. While my boyfriend’s house is only minutes from my parents’, my worries keeping me up early this year were that he had bought this house to be close to my parents so I could go back and forth with ease, at any length of notice, but that I had failed to consider still being with him after all these years and his house is not the most suitable for my brother should we need to take him in suddenly. Basically, I expected the relationship to fall apart like any others I’ve had. One guy - the one I wanted a relationship with most - even told me he couldn’t be with me because of my brother. So I didn’t think about helping him choose a house that might one day also house my brother. Finally getting comfortable in my relationship now, it dawned on me that his house is not ready for my brother; what will I do?

Unlike with my parents, I tend to tell my partner about most of my fears, and I only suffered insomnia for a few weeks early this year over this housing issue before I told him my thoughts. I constantly expect to be rejected or left because of the changes that need to be made when I do get that unwanted promotion to primary caregiver, but my partner insists he is in it to the end. Crazy man even says things like he wants to marry me, or spend his life with me. I’ve never been keen on marriage, so he’ll have to settle with being my lifetime partner if that’s how it shakes out. He was admittedly adopted into a family with some money, and the things that keep me up for weeks, he just shrugs off and accepts with ease.

“So what if the house isn’t ready right now? Unless something happens to your dad like, right now, we’ve got time; we can remodel and put in a better room and bathtub for your brother.”

On one hand, it does put me at ease; he is unconcerned about the cost and the hassle of remodeling to accommodate my brother’s needs. Just part of the deal, right? Take in me, take in my brother with special needs. It astounds me how easily he accepts these things. It’s also why I worry too; I know what taking on my brother full time involves, but my partner has only caught glimpses. I am glad he is so willing to say he’ll step up, but it is another thing entirely for him to actually step up when the time comes. He hasn’t had to fix and feed my brother meals every single day, or deal with my brother vomiting, or had to clean a tub that my brother just used as a toilet. He’s used to cleaning up after our critters, but I don't think he realizes just how constant it is to have to care for my brother, and how much extra time and planning it takes to do things as we get him ready to go somewhere.

But, at least we know what we’re in for. Mostly. Okay, maybe not really, but we know the basic stuff we’ll have to deal with. My parents - dad especially - had to undergo a truly unexpected learning curve.

There is a 16 year age difference between our mother and father; dad was only 20 when they had my baby brother. While I am concerned about the constant care I will have to provide in the future, I admire my dad for doing so for nearly 29 years now, starting at that young age. I even nominated him for Shield Healthcare’s 2015 caregiving contest, and we won! Well, dad won, I just also got to celebrate that I wrote something that won. Shield Healthcare is where we get medical supplies like the adult diapers for my brother, after many years of struggling to find help from programs (my mother “made too much” to qualify). I give mom her credit too, of course, but dad has always been the hands-on caregiver to my brother. It is, however, getting harder to watch him do so.

All those years of working on cars on the cement driveway or asphalt of a street and of chopping the firewood each year by hand with an axe has taken its toll on our father. He can lift my brother where even I can’t - I can lift him in and out of chairs, but I cannot carry him far or lift him high enough to get in or out of the bath. He’s hurt some muscles and tendons in his legs, and he’s getting ready to turn 50 next year. How much longer can I expect him to do this? When do I need to step in and take over as primary caregiver to my little brother? How am I going to solve some of these problems I face like getting him in and out of a bath?

We were once allowed a remodel of the upstairs bathroom at my parents’; $10,000 limit if I’m not mistaken. Initially, there was talk about putting in a walk-in tub and a motorized lift going from my brother’s room to the bathroom. The issue with the walk-in tub was the expense. While prices have come down some in the years since, they are still pretty pricey. Back then, it wasn’t in the remodel budget. The motorized lift would have been more problematic than anything: to put it in would have destroyed the ventwork that had been done only a few years prior to put in our swamp cooler and would have been an eyesore. There were also concerns about the possibility of selling the home later with such a modification.

Instead, a jet tub was installed and we didn’t receive anything to help get my brother in and out of the tub. While he enjoys a long soak in the jet tub, it is tall and deep. This makes it difficult to get him in and out safely. Other bath harnesses exist, but they are also fairly expensive, bulky, and more or less stationary. We wouldn’t be able to drag one on visits out of state very easily, which is when we usually could really use something like that. But the older we all get, the more concerning it is to me that my dad has to dead-lift my brother off the floor to put him in the tub - and lift him out when he’s soaked. So far, there’s no ideal solution. Caregiver problems.

The other thing done around that remodel was the modification of our front deck. When dad built the deck, my brother was still young and small, and didn’t use a wheelchair yet. So he built it with steps. Three, I think. I just remember they sucked during winter when I had to pull my brother in his wheelchair up them to get him in the house after school as teenagers. By the time of the bathroom remodel, I’d had to pull him up the icy steps for several years, so I was happy to have the ramp. It has unfortunately caused a few past trick-or-treaters to take a tumble when they accidentally step off onto the ramp in the dark, though, so there is that….

The promotion for this job is terrifying in every sense. It’s always been a family job to care for my brother. Mom is the main breadwinner, and handles the finances, prescriptions, and doctor appointments. Dad does the heavy-lifting - literally - and as primary caregiver, he is the one who feeds, washes, clothes, changes, and watches my brother most days. As a secondary caregiver, and just the sister growing up, I’ve had to fill in the gaps as needed. I am familiar with the daily routine. What I am not familiar with is what lies ahead. All these responsibilities will fall to me one day. Depending on the circumstances, it could be much sooner than later.

There will come the day when it is me who has to meet up with the social worker who comes to check on my brother yearly. I think it’s been the same woman for at least the last few years, and she has to come check things out; that my brother is still in need of care, and that he seems to be receiving it. I get it - not everyone makes a good caregiver and they want to check there’s no clear signs of abuse or incompetence - but it’s a stressful moment to have someone come around once a year and judge whether we are still fit to care for my brother. For my dad and I especially, it is horrifically frightening to imagine a stranger ending up with my brother. My brother can’t protect himself if someone begins to abuse him. He can’t walk, he can’t talk, he can’t see….

We won’t give him to a stranger willingly.

One day, any day now really, I inherit the responsibilities of my parents. Right now, as a secondary caregiver, is my only real chance to do what I want. Because once I step up as the primary caregiver, my entire life will be dedicated to and dictated by my brother’s needs. From getting him out of bed, changing and dressing him, putting on deodorant, brushing his teeth and hair, fixing and feeding him every meal every day, and giving him his medications, to setting up and attending doctor appointments, cleaning his bedding and laundry near daily, just getting my brother through the day will take up most of my time.

There’s no second or third shift. No holidays or weekends free. It is a 24/7/365 job that no one wants to help with - trust me, I know. The only time my dad gets a reprieve is when I come to help out; even the family mostly stopped helping out when my brother grew too big and heavy for most to lift and carry. Wanna go somewhere for a week? My brother has to come. Romantic weekend with my partner? Baby brother’s coming along too. Who would I trust him with?

Honestly, the uncertainty of our future is horrifying to me. It will only get harder when our parents pass away, and it’s difficult to look at it and not question, “How on Earth am I going to do this?” What happens if I pass away before my brother, or my health fails - then what? It’s the darkest storm clouds and a towering tidal wave on the horizon approaching; when will it hit and how bad will the damage be? I know I’m going to have to take on my brother fully even while I'm grieving the passing of our parents. I know it’s going to be rough; there’s no going into something like this and not getting absolutely emotionally thrashed.

Despite how frightening those looming days are… Despite how much inner turmoil the unknowns cause… I can’t let my baby brother go through it alone. I won’t; I refuse. He doesn’t deserve that. I can’t give him up to someone else. It’s going to be the hardest thing I ever do to take on that role. I didn’t ask for it. Neither did my parents. Neither did my brother. It is what it is - and ready or not, when the time comes, the time comes. It is going to be heavy, and it will require great sacrifices of me that I won’t want to make, but I will do it. No one else will.

I can take some solace in the face of these awaiting challenges. I am not the only one who struggles with the weight of this unenviable job; some even suffer worse dealing with even more complicated disabilities and special needs. Others know this painful internal struggle of surrendering a chunk of their own independence to care for someone who virtually no one will even see. Family caregivers like me know; when we go out in public with our charges, very few will meet our eyes. Society is ashamed; those who don’t meet our eyes, we know wouldn’t dare take on what we have. It’s why they look away. We take care of those in society who can’t take care of themselves - people who will never be able to offer anything to this world but the best smiles we’ll ever see. It is all at once crushing and empowering. But, best of all, I am not as alone as I feared I would be.

My partner may not worry as seriously as me, but maybe that’s a good thing; I worry enough for the whole family. He may be underestimating the toll of caregiving; maybe I overestimate it. Maybe we won’t last after all and I will wind up doing this alone. Maybe he’ll prove me wrong and stay with my brother and I to the bitter end. But for now, he is here - and willing to take this journey with us. Yeah, he’s crazy. Kinda have to be to do this.

Becoming primary caregiver for my brother reminds me of The Lord of the Rings. Specifically a popular line from Sam to Frodo, “I can’t carry it for you, Mr. Frodo. But I can carry you!” In this example, caregiving is the ring, so heavy. I am Frodo. And my boyfriend is Sam. He can’t carry my burdens or ease the weight of my fears; but he can help me get where I need to go. And, like Frodo, I am happy to have my Sam with me. It’s more than I thought I would have.

In the days when those storms on the horizon hit - the biggest ones, where my own supports are ripped from me - the debris of me will be washed out into that dark, emotional sea so eager to drown me. It’s going to be unforgivably rough, no doubt there. But with my partner, at least I am going into it with an inflatable raft to keep afloat. My brother gets the raft, of course, but so long as I can hold onto the side, I can keep my head up enough to breathe. I’ll still be exhausted and lost in those turbulent waters, but I’ll be happy to keep my head up to breathe easier.

Being a caregiver is to be many things: I am guide and guard dog; nanny and nurse; maid and chef. A Swiss army knife in my brother’s toolkit. It is a lifetime gig with no benefits, no holidays, no weekends.

My 2015 nomination was largely fluff. I explained that my dad had to deal with the hard, heavy aspects. But there was truth in the fluff. What we get back is little compensation for everything we do, but that doesn’t mean we don’t appreciate it or that it is ultimately useless. It’s scary to think of our future and what it holds, but, admittedly, all that is temporarily forgotten when my baby brother starts grinning and laughing while I sit next to him to feed him. Dad and I may carry the heavy weights physical and mental, but baby brother reminds us why we do it.

No, I don’t love my job. It is among the most unenviable tasks in human existence. It requires so much time and personal sacrifice and some things are just so daunting. Sometimes it’s just too much and there’s no one to turn to. It’s alienating and full of ceaseless struggles. No wonder most people in public don’t like to look. But I love my baby brother, and I'll keep caring for him.

There is another quote that fits well, also from The Lord of the Rings. It comes towards the end of Return of the King. I hope others in similar positions as me find some rallying strength with it; no doubt we need it. Because, my kin in these hardships, what we do - care for those who cannot care for themselves, keeping them safe and happy and healthy - it goes largely unnoticed. Our charges are forgotten and overlooked in society, and fewer yet even think of us who work so tirelessly for so little. Often daily. We do what so many will not. Face challenges others run from. Stand uncertain but determined before the unknown. We may not shine in the spotlight of society, but our strength is admirable. Even when we don’t feel strong; it’s a lot for any person. I’d wager a bet that a particular king of Gondor would have nothing but the utmost respect for us. That he, instead of demanding we bow to him, would instead kneel before us. Because we, my brethren? We bow to no one.

I don’t know what exactly the future looks like for my brother and I. I can only work to minimize the worst obstacles I see and hope it is enough. Maybe haunt the person who takes over if I do die first to make sure they do the job right! But, seriously, I can only stand by my brother and accompany him into that dizzying haze. Because no one else will do it, and I won’t let him go alone.

So long as I care for my brother - so long as I work to keep him happy and healthy and grinning the best smile I’ve ever seen…

...Everything else is secondary.

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