The Caregiver's Routine

Breakfast out with my brother is suddenly interrupted. Either he is not feeling well or he has eaten too much; either way, he is expelling his stomach. In a public restaurant. Again.

The staff know this happens sometimes, and there is much scrambling to get us something to clean him and his mess up. It is a busy stop, and other tables begin looking over at us as he continues to vomit on himself and the table, plenty of them exhibiting their shock and disgust. I can hear some of them whispering to one another.

“Why does she bring him here?”

“They should just stay home if that’s what he does in public.”

I wad up napkins and washcloths brought along just for this type of situation, sighing. My order had just arrived minutes ago, after I’d fed my brother his, and I haven’t gotten to eat much of it. Turns out, I won’t be eating a nice, hot meal here today. I silently signal our waitress, and she nods as she retrieves a to-go box for the rest of my food and the check. I continue cleaning up my brother, the table, and his wheelchair. I’ll have to leave a larger tip again today for the trouble we’ve caused.

Within minutes, we are outside, waiting for a driver with a vehicle large enough to accommodate his wheelchair. Since our parents passed last year, I have been the sole caregiver to my brother. They used to drive us to eat breakfast at this restaurant occasionally, and it used to be a family responsibility to care for my brother. Now, I use taxis and other services to get us around the few times we go out, as I prefer to sit beside my brother and keep him calm on the car rides. Eventually, a driver responds, and it takes me several minutes to get my brother into the vehicle and collapse the wheelchair enough to fit it in the trunk.

After a short ride home, permeated by the scent of fresh vomit and an uncomfortable silence from our driver, and an additional few minutes getting the wheelchair back out and ready, I manage to wheel him up the ramp and into the house. I lift him out and set him on the carpeted floor. Given we are the same height and he is 120 lbs, I do this task carefully, laying him down on his back.

“Wait here.” I say as I retrieve fresh clothes and a wet washcloth to wipe him down. Most of the mess had wound up on the table this time, so there is not much to clean off of him and I determine he did not get messy enough to warrant a bath.

Once he is cleaned off and redressed, I send him downstairs while I move his bedding into the dryer and place his soiled clothes into the wash. He crawls to the stairs and then slides down each step on his hip as he’s always done. I turn on the television for us to listen to and fill up and hand him his water bottle, which he sips from. An hour after I received my meal, I grab the to-go box off the counter and begin eating my cold food.

The rest of the day goes normally: I check on him frequently, change his diapers as needed, and feed him lunch, dinner, and dessert. Before I send him to bed, I move his dried bedding upstairs and make his bed. I give him his prescribed medications and tuck him in.

“Night, baby brother. Sissy loves you.” I say as I give him a kiss on the forehead.

“Wuh too. Nigh’.” he responds, best he can. I’m quite used to his quiet, limited conversations. I make my way to the kitchen to clean up the dishes before I go to bed too.

Hours later, about 4 in the morning, I awake. Sometimes he wakes up in the night and begins rocking, the action slamming the bed frame against the wall separating our bedrooms. I sigh and get up to check on him. He needs a fresh diaper, so I change him and tell him to go back to sleep. He stays up rocking another hour before settling down again.

I wake around 9 today. I check on him first thing; he is awake, laying with one arm over his eyes, and has, as is often the case, wet through onto his bedding. I use the restroom quickly, then pull out clean clothes for him and tell him to get down so I can change him. He crawls out of his bed and I change his diaper and clothes, putting deodorant on him before getting a clean shirt on him. He crawls down the hall to wait in the bathroom while I run trash out. I return and hoist him onto the toilet seat. Dad was able to set him onto the bathroom counter, but I am not tall or strong enough to lift him so high. I brush his teeth and hair, then move him off the toilet and tell him to make his way downstairs.

I start his bedding in the wash and begin making us breakfast before I realize the black notebook I keep our schedule and important notes in is not in its normal spot by the coffee maker. I assume I must have left it in his backpack on the back of the wheelchair, but once I find it isn’t there either, I realize I must have left it at the restaurant. I feed my brother and make my own plate before I call.

The owner recognizes my voice and interrupts my immediate, sincere apology for yesterday, “I found your little notebook after you left. Will you be able to swing by to get it?” she asks. I pause a moment to consider my options. Just to get my brother ready and a car that can take us there will take over half an hour, and I had not expected to go anywhere today.

I explain to her that I can simply wait to retrieve the notebook next week when we are already out doing some errands, but she offers to bring it by after work. She sounds insistent, so I assume she must not want to hold onto my personal effects at her restaurant for a week. I thank her, tell her I’m sorry for the inconvenience, and inform her I’ll keep an eye out for her after I know she leaves work for the day.

After I eat my breakfast and move my brother’s bedding to the dryer, I ask him if he wants a bath today. He grins excitedly in response, so I get the tub ready while he crawls up the stairs. Once he is stripped down, I brace myself. I have to lift him from the floor, over the tub wall, and into the bath. The bath swings and harnesses made for this task are too bulky to work in our bathroom or with our tub, and I’d still have to lift him onto any bath chair, so it is the only way to get him in and out of the tub. I’ve concluded I’ll only have something that works well if I custom-make one myself, and I can’t even imagine where to start.

I don’t draw an easy breath until he is safely in the water, then I turn on a small radio in the bathroom for him to listen to and let him soak like he enjoys as I get ready to do my own laundry and start prepping food for both lunch and dinner.

I return to check on him often between tasks, and when I check on him about 40 minutes in, my shoulders sag in dismay; he has used the tub as his toilet. Again. I have to remove what I can of the mess, then drain, clean, and refill the tub before I can bathe him. The task takes nearly an hour and my own clothes are wet by the time he is ready to be dried off and removed from the tub. I pick him up carefully and don’t breathe easy until he is safely laid on the towels I’ve spread out on the floor. Once he is redressed, I send him downstairs for lunch while I change my wet clothes.

After I’ve finished feeding him lunch and eaten my own, I have to get dinner ready for the oven. Watching the clock all the while, I have just set dinner in the oven to cook and cleaned up the counters when the doorbell rings. I greet the restaurant owner thankfully, asking her to come in for a glass of tea or other offering for the trouble of bringing my notebook to me. She declines politely, quickly handing me my notebook with a large grin. We begin chatting, and I notice a sly glint in her eyes as she continually glances at the object in my hand.

“I thought it was yours when we found it at your table after you left, but I wasn’t sure until I poked around a bit. You don’t have your name or address in it.” she admits. I am surprised and a bit uncomfortable at her admission, but she is right that I have nothing written within to identify it as mine without looking through it. Eventually, I tilt the notebook upwards to see why she keeps looking at it, and notice the loose paper between the pages.

Noticing her smile grow wider when I see the paper, I remove it curiously; it is a check written out to me for around $20,000. Stunned, all I do is gape at her wordlessly.

“Once I looked at it and realized it was your schedule and things that you need or want fixed, I was astounded at the things you have to do to take care of your brother.” Sheepishly, she continues, “I was so shocked, I started chatting with one of the waitresses about it. Customers overheard us talking, and they started donating money they wanted to give to you! Even the tourists on several of the buses going through donated, which is how we got so much so quickly.”

I stare blankly at the check, then start to hand it back to her.

“This is too much. I can’t-”

“Please take it.” she says insistently. “You’ve taken over caregiving for your brother all by yourself since your parents passed. It can’t be easy and we can’t fix everything, but we hope you can use this to make things easier for you both.”

“I don’t deserve-”

“You do!” she says sternly. Then, more gently, “You could use some of this for equipment you need and other things you want. You do everything for him; use this to do something for you. Don’t tell me that you can’t use it or that you don’t deserve it. I don’t know anyone else that would do what you do.”

I look over the check again, thinking of the long list of uses for it and humbled to silence. Tearfully, I hug her.

“Thank you so, so much…” A tender moment passes before I bashfully excuse myself, “Thank you, truly, but I do need to get back to my brother. I still need to feed him dinner.”

She chuckles warmly as she leaves, “Of course! And you’re most welcome.”