LOSING MOM - Part 48

I wish I could remember the last thing Mom said to me. The last time she looked at me and knew who I was, and said my name. But her death was so gradual it was like watching the tide go out in Maine, her energy seeping away in such tiny increments it was impossible to measure moment to moment. And just like an ebbing tide, Mom’s voice disappeared in such imperceptible degrees I didn’t notice it was gone until it wasn’t there.

Similarly, her breathing pattern started to change in small ways, too, becoming more irregular and uneven, her mouth always open as if trying to tempt the air in. I was scheduled to fly home on Sunday, as it was Sal’s turn to be the sister-in-charge, but when the nurse reported Saturday morning that Mom had experienced several episodes of apnea the night before, I decided to stay, cancelling my flight and keeping my return home open-ended.

Apnea, in my experience, was definitely not a good thing.

When our daughter was born 4 weeks early, she was just under 6 pounds but otherwise healthy and well, though they kept her in the nursery the first night to keep an eye on her. The next morning I walked down to see her, only to find she’d been moved to the newborn intensive care unit because she’d momentarily stopped breathing and the nurse had to give her chest a tap to wake her lungs back up. Fear bubbled up in my chest and I felt the color drain from my face.

“Try not to worry,” the nurse reassured me, touching my arm gently. “Apnea is very common in newborns, especially when they’re premature. Elizabeth only had the one episode, so I’m sure she’ll be just fine. Come with me, I’ll take you to her.”

I’d never heard the word ‘apnea’ before, and as I followed the nurse down the hospital corridor I repeated it over and over in my head, like a mantra, so I’d remember it later when I talked to John. “Apnea, apnea, apnea. Elizabeth had an apnea.”

The nurse was right and there were no more episodes, but to be extra cautious, because I’d had a brother who died from sudden infant death syndrome at four months old, they put Elizabeth on a home apnea monitor to measure her breathing twenty-four hours a day. John and I were trained in how to use it, and how to do infant CPR if the alarm ever went off, indicating she had stopped breathing. What I don’t remember being trained for were the ‘false’ alarms - the times when the ear shattering alert would go off, not because Elizabeth had stopped breathing, but because one of the electrodes on her chest had become loose or detached. And since there was no way to know if the alarm was false or real, John and I were launched into full blown panic mode whenever it went off, our hearts in our throats until we saw Elizabeth breathing easily in her crib.

One night we were both in the deep, exhausted sleep only parents of an eighteen-month-old and newborn baby could know, when the blaring alarm went off, jarring both of us awake. Before my mind could make sense of what was happening, John had jumped out of bed and raced to the door, which he didn’t realize was closed so hit full on, the impact stopping him up short. “Oh my god, are you okay?” Blurry-eyed I struggled out of bed to get over to him, but he had already yanked the door open and was running down the hall to Elizabeth’s room. 

Following in a bleary fog, I found him leaning over the crib with two fingers on Elizabeth’s chest, his head bent low trying to determine in the dark room if he could feel her breathing. I pushed the button on the monitor to silence the alarm, the sudden quiet almost as deafening as the blaring sound had been. “She’s fine,” John whispered, his shoulders sagging over the crib rail with relief. “Oh my god - that was terrifying!” I rubbed his back in commiseration, my own heart still pounding in my chest as we both stared down at our sleeping baby.

Over the next few months we would experience several more ‘false’ alarms, each one triggering the same blinding panic, the same heart-pounding fear that Elizabeth had stopped breathing, and it was up to us to save her. It was up to us to get her to breathe again. 

With Mom, though, it was the opposite. Well, almost the opposite. While there were no apnea monitors or shifting electrodes to worry about, and no life saving interventions to prepare for if she stopped breathing, there were definitely many false alarms. Paralyzing moments in those last few days when the pause between her exhale and inhale was so long I felt certain it had carried her away, and I’d hold my own breath, waiting to see.

Since Sal had gotten back to Ohio we’d begun to take turns sitting with Mom, partially to give each other time alone with her, but perhaps more importantly, to give each other time away. Not from Mom - it was hard to leave her for any reason - but from the increasing absence of Mom. At times being in that room was like being in a vacuum, where some unknown force was sucking my mother’s energy away, leaving behind an almost palpable emptiness that felt as inevitable as it did impossible.

There were other times, though, when a profound sense of peace would come over me as I sat alone with Mom in her room. Late that Saturday afternoon, for instance, she was sleeping comfortably, so I curled up on the recliner and tried to rest, my own sleep having become increasingly elusive the past few nights. The swooshing and gurgling of the oxygen concentrator muffled the sounds coming from outside in the hall, and the weight of its familiar rhythm allowed my thoughts to settle, my body to relax. 

Dozing in and out of wakefulness, I heard the housekeeper come in, her movements as she maneuvered the dust mop around the room so measured and smooth I hardly knew she was there. Her quiet presence added to the peaceful weight I was under and I didn’t want to move, even to say thank you when I heard the door open as she slipped out of the room. 

Then somewhere in the back of my mind I became aware of Mom’s breathing. Or not breathing. I sat up and peered over at her sleeping form, trying to see if there was any movement coming from her chest. I’ll count to ten, I thought, forcing myself to stay put, to not jump up and shake the missing breath back into her. “One, two, three, four…” I glanced at the big wall clock, watching the second hand tick away as I counted silently in my head,“five, six, sev…” and then Mom breathed in, her short, quick intake of air startling in the quiet room. I closed my eyes in relief.

And so it would go the next couple of days, counting the seconds in the pauses between Mom’s shallow breaths, fearing and hoping with each one it would be her last. The spiritual me, the one who trusted death was just a transition, not an ending, hoped Mom would let go, wanting her to be at peace, her struggle over. “Please, please, please,” I would pray as I silently counted the seconds, “just let go”. But the physical me, the flesh and blood me sitting in the recliner anxiously watching the secondhand on the wall clock tick away the seconds, was terrified Mom would let go, the lengthening pauses like spiraling black holes threatening to suck in her last breath while I sat there counting. “Thank God”, I would sigh when Mom finally breathed back in.  

Those two me’s, the physical one and the spiritual one, had been in a constant state of conflict since we’d brought Mom to Hospice, their battle inside me an exhausting tug of war between acceptance and resistance, trust and fear. I wanted Mom to die, but I didn’t.

                                          ~~~~~~~~~~~~~~~~~~

It’s been said that people often die in the manner they lived, so I guess it shouldn’t have been surprising our tenacious mother was as stubborn in her dying as she was in her living.  For weeks she’d been displaying many of the signs that indicate death was just days or hours away, at least according to the What to Expect pamphlet we’d been given upon her arrival at Hospice - eyelids unable to close completely; sleeping most of the time; difficulty swallowing; decrease in blood pressure - the list went on and on. Sal, Lib and I joked that Mom had so far broken every ‘dying’ rule mentioned in that Hospice pamphlet, and wouldn’t it be just like our endearingly stubborn mother to be the first person to ever not die.  

But over that last weekend, Mom’s body finally began to show increasing signs that perhaps death was, at last, getting near - a thready pulse, mottling in the feet, restlessness. Sunday afternoon, in particular, I got back to her room after getting some lunch and found Mom pretty agitated. She seemed to be in a different place than earlier that day, her eyes open, but not seeing, making sounds that, though unintelligible, seemed quite anxious. Worried, I went to find the nurse to see about getting her a breakthrough dose of morphine, in case she was in some kind of pain. 

“It might not necessarily be pain that’s making her so restless,” Nellie explained as she gave Mom some extra morphine and a dose of Ativan for her anxiety. “Your mom’s had a long journey - she might be working through some anxious events in her life in order to finally let go.”

My accepting, spiritual self nodded sagely at Nellie’s explanation, trusting that Mom’s soul knew what it needed in order to make its transition to the other side, even if it was making her restless and agitated. But at the same time my heart was sinking, the idea of Mom having to work through some unknowable, anxious event in her life was beyond distressing to me, especially because there was nothing I could do to help her through it.  Helping Mom get through things was what I did. What Sal, Lib and I all did. 

But on that early April Sunday afternoon, as I watched the drugs work their magic and Mom settle back down, I realized she had entered a stage on her seemingly endless Hospice journey that didn’t include me or my sisters. She was on her own, navigating her way down some mysterious spiritual path we would never know, and hard as it was to sit by and watch her, it was the only thing left for us to do. 

To be continued...