I’ve been away. Obviously. I have a good excuse – my mom died. Twice, actually.
…It’s ok – she’s back with us. We’re all still getting used to everything that this entails. A new normal for everyone involved, new limits, new routines, new paranoia, new hospital bills. New PTSD for both of us.
It was 4am on a Sunday morning when she came into my room, eyes wide and her voice high pitched with panic: “I can’t breathe” between frantic gasps. I whipped off my AVAPS mask and pushed it into her hands, and she tried desperately to use it to breathe. I called 911, screaming for J, at the other end of the house and on the other side of a closed door.
He never heard me.
My mother collapsed into my wheelchair while I breathlessly gave the operator my address. Could I get her on to the floor, he wanted to know. Mentally screaming in panic, I would have given ANYTHING to be able to perform CPR on my mother. I explained I couldn’t and why. I watched my mother’s eyes roll back. She stopped attempts at breathing and slumped over.
I told the operator she’d lost consciousness, optimistically. The operator asked again could I get her on the floor. I saw flashing lights outside. I couldn’t yell loud enough to get J to come unlock the door to let the paramedics in.
I was absolutely, totally Helpless.
I couldn’t do CPR. I couldn’t get her in recovery position. I couldn’t yell loud enough for help. I couldn’t unlock the door for the paramedics. I could do nothing.
J was awakened by the paramedics pounding on the door. They came in, hauled her on to the floor and started CPR. I was a helpless audience, trapped in my bed while a room full of people in uniform brutalized my mother’s body. CPR is a harsh, ugly thing to witness – I already knew this, but I was unable to look away. I heard the word “asystole”, which my brain knew meant dead. My mother was dead. I was right. I’d watched her die. They continued to push. They wanted more room. They moved her to the kitchen. All I could do was sit in my bed and hear them work some more. I heard “got a pulse”. I heard “let’s move her”. A police officer came in and said they were talking her to Saint Vincent’s.
J was finally allowed to come to me; the emergency crew had blocked him from my half of the house. He helped me get dressed while I told him what happened, still wide-eyed with shock. We drove to the hospital. And waited. I signed a DNR, in case she crashed again. We’d talked before about it, and she’d said she wanted to be let go. I wondered if I’d fucked up already. I wondered if she would wake up. I called my brothers. I finally let myself cry. I felt scared and completely helpless.
Mom spent ten days in the ICU.
We found out later she’d flatlined again en route. We were very, very lucky to haver her still with us, but it was perfectly clear that it was a very fragile hold on life. Every minute was by chance. I visited her as often as I could. Thanks to COVID, there were some really fucked up visitation rules which meant only my older brother and I could visit. At All. Not per visit, not per day, at all. She could die any day and my younger brother an his wife weren’t allowed to see her. Her prognosis changed by the hour, and the doctors made it seem like any minute my brothers and I were going to be called upon to decide to pull the plug on her or not.
….Which was pretty fucked up, because she was conscious sometimes, just sedated as fuck. Day three she regained consciousness but couldn’t communicate because of the tubes and the drugs, and we weren’t sure how much brain damage there was from being dead for a bit. So even as they’re asking us whether or not to consider a lifelong ventilator our a graceful exit, we’re like, shit, dudes, she’s RIGHT THERE. Maybe lay off the sleepy juice for a bit and see if she can tell us what she thinks? She was conscious yesterday, why didn’t you ask her?
For most of her ICU stay, she was intubated, so she couldn’t communicate well. Just vague gestures towards her feet when they were cold. Weak motions at her face because she wanted the tube adjusted. And when she finally could communicate, she usually asked for simple things. Her eyelids were sticky. Her lips were dry. Her feet were dangling off the side of the bed; could they be lifted back into place please.
Things that an able bodied visitor would have been able to take care if in a jiffy, but things I had to call a nurse in for every. Fucking. Time. I felt useless. I couldn’t get my mother a sip of fucking water. I could fix her eye crusties in two seconds with a damp washcloth if only my fucking hands worked.
Meanwhile at home, I was left alone for the first time in years while J went to work. We were both nervous about it. The silence in the house was deafening. Mom is a quiet roommate, but I can still tell she’s around. I had to be extra careful to have my smart watch or my phone on me at all times in case something happened, so I could call J. We had to figure out lunches for me that didn’t require heating or prep that I could have in my mini fridge, since no one would be around to get me food. I ate a lot of lunchables.
I realized that I couldn’t make myself a sandwich now if I wanted to. I’m helpless to feed myself without prep.
Mom recovered enough to spare me the decision to kill her or not; in fact, got the vent removed, moved to a biPAP machine, and then to a regular nasal cannula and was moved to a regular hospital room in one day. I brought her a celebratory Pepsi, which I had to ask a nurse to pop for her. She didn’t remember anything, thanks to the sedation drugs.
After a week in the hospital, she had to do three weeks’ time in a nursing facility to recover. She wasn’t even strong enough to hold her cellphone when she was admitted. She quickly built up her strength, though, like, SUPER quickly, and though she’s not quite 100% back to where she was, she’s something closer. I was deathly afraid of her checking in and not checking out of that place, but she worked hard and busted out of the joint.
She, of course, is worried about taking care of me. She’s not back to her former caretaker duties and she may not ever be again; any time she comes in to talk to me about something, she has to sit in my wheelchair and catch her breath from coming in. Once she worked up the nerve to sit in my wheelchair again, that is; that took some working up to. I told you: PTSD. We’re not back to how things were but she’s home.
I’d give anything to be able to keep up the house and cook her healthy meals and cater to her so she can just concentrate in healing. She’s fucking DIED. TWICE. I want to give her the luxury of time to repair.
But I can’t. I’m helpless.
Helpless in my own behalf sucks and I hate it. Having to rely on others to do things for me blows.
But this helpless on behalf of others bullshit? It can fuck right off. I just want the strength to make my mom an egg sandwich. Or do her laundry. I just want to help her. Whether it’s fetching a drink or sweeping her floor.
Being this useless blows goats.