I’ve passed out three times in my life. Twice, while receiving spinal epidurals, and one time after too many tequila shots at my sister-in-law’s graduation party. Dizzy nausea hits first, next the confusion, then my hearing goes. I don’t get the prototypical tunnel vision; I assume my body gives out before I get to that point. I do get flashes of bright colors in the form of floating shapes. If they weren’t indicating an abrupt change in blood pressure, they’d be interesting to look at.

There were three nightmarish, unimagined days in the span of the six weeks it took my mom to die. I knew that whenever she died, there would be an unknown pain to endure. I had already dealt with the blow of the news. My brother and I had filled out her advanced directives (no CPR, no extraordinary measures). I had met with each of my siblings to tell them, and then my father. I spoke with Mom’s boyfriend. I set up times to meet with her friends. I sent messages to her family that I didn’t know directly. I called my cousins. All of that was behind me. I was settled into a pattern of waiting.

A week after my mother had been placed into a skilled nursing facility, I came equipped with bags of clothes for her. The facility was clean and impersonal. Hushed and disinfected. Welcoming and full of death. Her bed was on the left side of the partitioned room. There was a sunny window, a table on wheels that extended over her bed, a TV, and a cheap armoire. It had been one week since the young doctor on the med/surg floor looked into my eyes and told me she was in liver failure and not a candidate for transplant. The doctor couldn’t tell me how long Mom would live but told me that she couldn’t just take an inpatient bed up indefinitely while that happened. I’m sure it was said to me more delicately, but the message was the same. Once the chaos of choosing a facility, transporting Mom to it, and familiarizing ourselves with the new, but familiar medical setting had settled, I remembered I needed to fill the empty armoire. It didn’t occur to me to bring Mom her own clothes – my mind was still protecting me by making this feel like a bad episode, but surely not the end. The reality is that her own clothes probably would have been too large at this stage never crossed my mind.

I came in and greeted the nursing staff. I didn’t know their names yet, but I recognized some of their faces and they knew mine. I smiled at them as I walked to her room on the far side of the East Hall. As I turn the knob to her room, I reminded myself of the following:

• Her skin would be a frightening shade of yellow. All of it. Even her scalp (I noticed the last time I visited and rolled her wheelchair to the courtyard garden for some fresh air).
  
  
• She may not recognize me. She had recently been mistaking me for her sister.
  
  
• She was likely angry and confused that she was there and not home.

I braced myself as best as I could and walked in. I greeted her roommate and walked into her half of the room. I found her writhing on the bed, as yellow as a Simpsons character, in a diaper (I had been told of this, but this was the first time I saw it) and looking genuinely pained and disoriented. I put the bag of clothes on a chair as the stomach and throat signals came. I joined her disorientation for a moment – where was I? What was I here for? And then, I couldn’t hear her whimpers. It took until the temporary deafness set in for me to realize I was on my way down.

I swiveled and quickly left the room. I needed a chair and I needed air and I needed them immediately. The sky outside had already gone dark – it was early September but the air felt like November. Without awareness of the particulars of how I found myself in the “guest” dining room – and mercifully, there was a cushioned chair. I sat, put my head on a table, and started counting my breaths. Inhale, one, exhale, two, inhale, three, exhale, four. I knew who I was and where I was. Inhale, five, exhale, six, inhale, seven. I could hear a vacuum whirring in the distance and a clatter of laughter from the nurses’ station. Exhale, eight, inhale, nine, exhale, ten. I remembered that I had left her there – squirming unnaturally and unaware of where she was. I took three more breaths to clear the dancing colors from my field of vision and pushed myself from seated to my feet. I oriented myself – I had never been to this room; if mom ate at all it was in her bed. I walked towards the nurses’ station. I counted my footsteps as I did this – I needed to give my brain something important to do so that the images that had been seared into it were given sufficient space to process. I was latently aware of the need to do this. Eighty-three steps later, I was in front of the staff, becoming an uneasy advocate. “Hi, excuse me, um, sorry. My mother is in room 208. She needs help. Has someone been in to see her recently?”

The writhing on the bed, bright yellow in a diaper, was one. The second one was when I brought my husband to see her. I had two babies – two years old and 8 months. Leaving my fledgling family multiple times a week to see Mom meant driving from our home 50 miles away and through Boston. The news relayed to me from the medical staff continued getting more final, so I decided it was time for my husband to say goodbye. Mom’s alcoholism was difficult on all of us, but there were bright spots throughout the course of her disease. The labels “alcoholic”, “disease”, and “terminal” were new to our lexicon. Before, she drank too much but generally had herself together. She lived in a condo by the sea with my younger sister, and on the days she was too drunk to be reasonable, we wrote it off. She had accepted him early on and had enjoyed having a drink with him on the deck or down at the bar. They made each other laugh.

We dropped the kids off with his parents, and we made the trip north. Traffic in Boston was bad, so we stopped off in Quincy and found a run-down Italian place to eat. The red and white checkered pattern was on the table under a hard sheet of plastic. The parmesan cheese was in a short, wide shaker. The wine was just ok. Of course, he knew that she was dying and had heard my stories, but I didn’t feel like he was prepared enough. “Ok, so like she’s REALLY yellow. Like … you probably think I’m exaggerating, but she looks like she’s out of The Simpsons. She probably won’t know who you are. She only knows who I am sometimes. She wears diapers – the staff will kick us out if she needs to be changed. Don’t bring up the kids, it confuses her”. I couldn’t prepare him, I knew that. I led the way into the building and started down the hall toward her room. I stopped short at the nurses’ station – Mom was in a recliner there. She was attending to her old teddy bear. A medical assistant with a Caribbean accent and calm eyes turned to her and cooed, “Ooh, are you feeding your baby? What a good mommy you are”. Mom blinked and nodded blankly – an interaction I had seen myself with my own two-year-old. She looked at me with yellowed eyes and no recognition.

“Hi, Mommy (I hadn’t called her mommy ever that I could recall, but something about seeing her in this new state of arrested development made me feel like using that epithet). I’m Jessica, do you know Pete? This is my husband”. I turned to Pete and saw a disquietude on his face that I had never seen before and have seen only once since. He said nothing, eyes fixed on my withering mother, who was tending to a ratty stuffed animal on a vinyl recliner. He blinked back tears and said a weak but buoyant, “Hi, Joan”. She turned to his voice, and smiled up at him, identical to the way our little daughter smiled at strangers at Target.

“She was restless and wandering, so we decided to keep her up here with us” the head nurse explained apologetically. I activated the part of my brain that allows me to immediately compartmentalize trauma in the moment in an attempt to do the next right thing. I thanked her for taking care of Mom and letting her stay with them. I asked if Mom had eaten anything. I asked about her medications. I asked about her pain. I asked everything that I thought a responsible daughter of an actively dying mother would. Maybe I wasn’t prepared for this role, but my mantra had become “fake it til you make it”. What would an adultier adult do in this position? I couldn’t let the medical staff know that I had no idea what to ask. I couldn’t let them see that I was ill watching my mother disintegrate. I couldn’t let any jarring aspect of a terminal 54-year-old liver failure patient break through my facade of “adult who has her shit together”. So I did not ask:

• • • When did she start hallucinating?
      
      
    • Was this something they had expected? Why didn’t anyone warn me I would be walking into this?
      
      
    • How could she forget us? How could she forget me?
      
      
    • What was next in this regression? She was already eating toddler levels of food, using a diaper, and needing near-constant care. What’s next?
      
      
    • When was she going to die?
      
      
    • Was I extraordinarily selfish for secretly hoping for the end to come, to shake off the parade of horrors I was becoming too accustomed to?

Pete spoke to her weakly and then headed to the car to wait for me. I told Mom I loved her and watched on as the staff put her to bed. It was a voiceless ride home.

On the third day, I was at home with the babies. My phone rang with an unfamiliar number, but the area code was 978 so I picked it up. It was Mom’s caseworker. She was straightforward and unemotional, which I appreciated about her. “The doctor came and saw your mother this morning; he’s decided she is unable to make decisions for herself any longer. He wants to invoke proxy.” For those who have not been witness to such a decline, being a healthcare proxy is essentially meaningless unless a doctor has decided to invoke it. Once invoked, the proxy has decision-making power over the incapacitated person’s healthcare decisions. Chief among these in Mom’s situation were medications. Pain medication, anxiety medication, comfort measures. In less than 30 seconds, I had become the invoked proxy and was immediately called on to approve narcotics to control her pain, manage her symptoms and lessen her anxiety. “Unfortunately,” the case worker continued, “they need a wet signature from you. Can you come up right away?”. No, I live at least an hour away (if there’s unplausibly no traffic in Boston) and many more hours if there is. “Well, I’ll email the orders to you, but we can’t accept it back via email, that isn’t HIPAA compliant” she informed me. “The only thing I can think of is faxing it back to us”.

I hung up. I had my youngest daughter on my hip. I looked down at her drooling baby smile and asked her where we were going to find a fax machine. We didn’t have one in our second-floor apartment. I printed the e-mail. I read over the orders, with no frame of reference if these medications would be helpful or harmful. The sunbursts of neon colors started to cloud my vision.      The baby started to wail about her unmet needs. The two-year-old tumbled out of a dining room chair and shrieks in surprise. The scene of Mom twisting helplessly on the bed replays in my mind. I put the baby down, picked the toddler up, made a bottle, gave the sobbing two-year-old a snack and juice, and set her in front of Peppa Pig. I handed the baby her bottle and begged her to stop crying. I put my head down on the dining room table, in the same way that I had in the dining room of the nursing home. I saw Mom in our old house in Hyde Park, sipping a Miller Lite with her sister and my father on a long past summer afternoon, laughing. Inhale, one, exhale, two, inhale, three, exhale four. I picked up the phone and scrolled through my contacts for the most put-together adult I could find.

“Hi Liz. The kids are good. Mom’s not doing great, they invoked proxy today. Thanks. I know. I am trying to get some sleep. Listen, do you have a fax machine? I have to get these medication orders back to the nursing home”. One of the girls screeched. “Sorry, that was Charlotte. I need to get her down for a nap. Can I come over? I’m so sorry, I don’t have a fax machine at home and I’m not really sure what else to do.” I lugged the sleeping baby in her car seat and my older girl bobbed after me. She loved to visit Liz and the toys that she had saved from when her kids were small. Liz threw directions for the fax machine over her shoulder as she followed the determined and clumsy toddler’s run into her living room. At that moment, I was thankful for Liz, thankful for the fax machine and thankful for the brief reprieve of being responsible for everyone. It took three tries, but I got the orders to go through. I called the SNF and confirmed; I wanted to be confident they received it. I signed off on everything – by this time, I knew she was not coming out of this alive. I wanted her to be comfortable. I hoped that I did the right thing, and quietly resigned myself to the supposition that I will never be able to know that.

The baby stirred and looked up at me from her car seat, blinking and silent. I gave her my broadest smile and sang out her name. She drooled and reached up. I took her into my arms and relished the feeling of her weight. From this point on, anytime she was with me, I held her. This went on for quite a while after my mom died. She became my raft in a tumultuous and unknown sea on that day. She laughed as I gave her cheek raspberries. She was unaware of her new role, or that I had assigned it to her. She grabbed my hair in her sticky fist.

After Mom left for the next place, the normal procession of sympathies came through. For the month following Mom’s death, I was surrounded by the love and concern of family and friends. I felt an air of discomfort during this time. I was the first of my peers to lose a parent. Eyes lingered on me and my reactions so that their playbooks could start to come together for the inevitable day that they were me. It’s a normal thing for the brain to do, but leading this particular charge was yet another unexpected role. I didn’t want it, and the resentment started to rise. That I had repeated this cycle with my daughter in making her my comfort object during this time was lost on me until much later. I declined to be the case study for grief and steeled myself against the sympathy and pity of the people in my sphere. I refused to become anyone else without my consent.

Mothers’ opinions always err on the side of their children, especially their first. I could be solidly in the wrong, and Mom would find a way to make me blameless. This isn’t always a virtue; it often gets in the way of truthful growth. But on the days when I want to have someone to show me favor, only me, for the sole fact of my existence and without reason or logic, the urge to call her and get that boundless support goes unanswered. Like a free-floating boat at sea, its landing destroyed by the relentless crashing of waves and unpredictable weather, I move without a destination or ability to stop. The depths before me are mine alone. This is the unknowable aspect – something that cannot be prepared for. Like the three days of unanticipated horror that preceded my mother’s death, the lifetime of remembrance and unanswered calls is part of the loss that cannot be prepared for. The deep blue pain will come, as unfaltering as the tidal flow.

– Jessica Gardner

Author’s Note: This is my first published work. The loss of a parent is a seismic event in many people’s lives, and I wanted to concentrate on the moments that I could never have anticipated. The nautical imagery is a dedication to Mom; her love of the sea and its expansiveness and ability to cleanse and heal lives on through me. My goal with ¨Unmoored” is to join other writers who have discussed loss and healing. This community has provided me with connection and comfort while navigating my own life, and I am truly honored to be able to share my experiences in The Bookends Review.