I would like to again welcome my sister, Leah Shaw, who you saw in the Eulogy for My Mother post last year. Mom would have been 63 today. We miss her. Also, grief is wierd, and messy, and never final at all. This is a window into both the life, and death, of our mother. Her life was influential, rich, and important. Her death was hard, and we miss her terribly. I hope this reflection on our loss helps you know the reasons we loved her in life, loved her in death, and love her still.
My mother died at home. I was there. She had Alzheimer’s disease officially for nine years, plus add four or five undiagnosed years for safety. She trekked through that diseased decade with her mom-like Midwestern resolve, and she did outlive many a doctor’s prediction. And then, right before her final week of life, her severely affected brain issued the decree that she no longer needed to eat. Of course, this nutritionally not being the case, and because my mother had previously declared opposition to tube feeding, this meant the end of things.
As it turns out, it takes a person whose body is healthy, like my mother’s, but whose brain has screwed the pooch, seven days to wind down and sail off, morphine-soaked and (we hope) tranquilly, into the hereafter. For those on the outside, each of those days weigh exponentially more than most days do. There’s no morphine for us, just hushed voices and red wine and checking the time constantly and conversations that you don’t remember later, with the pressing weight of a diminishing window of opportunity to be with that person, even if it is just their body and breath. There is the constant series of decisions about when to interact with the dying person, of how to grab a few final meaningful moments together, the fear that they could replace your earlier, healthier memories.
That week, I took the chance while she was definitively asleep to climb into bed with my mother and shimmy myself down into the gap between her body and the metal spine of the hospital bed, a narrow space into which I fit only by turning sidewise, so that I was staring at her sleeping profile. She hadn’t allowed me that close to her in years. (As her personal musical assistant rather than her daughter, my decades-old practice of snuggling my head on her chest just inside her left shoulder blade would have been, you know, discombobulating for her.)
In the years after she “forgot” who we were—a verb we never replaced with anything more apt—my sisters and I would, on trips home, wait for her to be in a good mood, then my little sister Carrie would go up to her, wrap her skinny arms around my mom’s neck, and say, “Hug me, momma!” while Erin and I watched to see if it would happen this time. Mom would look up, a little startled, hands hanging at her sides, and make a little confused half smile, like she was kinda glad to be in on this joke but not sure of the punchline and hoped Erin or I might give her the hint she needed. Occasionally—just occasionally—she would “hug” my sister back—place one or maybe both of her hands lightly on Carrie’s sides. We would take that as a win. It was like grabbing a little drop of water when you needed to be hosed down, but even after the drops were mostly all dried up, we learned to celebrate each one anyway.
So each day of that final week I spent some time in that little space beside her and mostly stared at her nose. Seen from the side, her nose formed a perfect, fairly bold triangle with a little bump of cartilage at its tip that I had loved since I was little, thinking it looked like a button to be pressed. As a kid I’d often come up and ask if I could press her nose, but then I would overstay until she’d wave me off like you would a fly, laughing and saying “Shoo! Get outta here!” and send me scampering off with a light pat on the butt to my next activity.
As I lay there beside her I contemplated whether it would be considered taking advantage of the situation if I pressed her nose. In the end, I allowed myself a total of two (very satisfying) nose presses. I discussed with mom my future plans. I promised I would play her some good exit music as she was leaving us. I promised some other things I may remember at some point in the future. One day I recorded a minute of her breathing, which is stored in the voice memos on my phone. I tried not to be too sad around her, so once things caught up and I started to get teary, I’d extract myself from the bed and go out for a little walk.
One afternoon when I was in seventh grade after The Downtown Middle School let out my mom pulled up in the family van to scoop me up. I hopped into the backseat behind my older sister and we turned onto Cherry St, looking for a parking spot near the music store where my sister took French Horn lessons every week. (I would soon begin playing bassoon and would be too short—or more accurately, my arms too long—to lift the heavy wooden instrument clear of the ground as I walked, so mom would carry it for me through the halls of the murky Salem College basement for my music lessons.)
My mom found a spot in front of Ronnie’s Country Store, parallel parked the van like a boss and threw it into park, idling as Erin jumped out of the car. She flung open the rear door, hoisted her horn from the trunk, and jumped back into the passenger seat to receive her post-lesson pickup instructions. A bearded homeless man was walking by and approached my mom’s window which she rolled down. “Do you have any money?” he asked. My mom glanced at her purse beside her and back to the man, then grabbed it and said, “I’ve got a ten dollar bill in my purse right here. I will give it to you, as long as you promise to go get something nutritious.” “Oh yes, ma’am, I sure will,” my sister remembers the man replying.
Mom rolled up the window as we watched him trudge confidently off, stride past the overflowing fruit and vegetable bins sitting at the entrance of Ronnie’s, and hang a left into the Tobacco Store a few doorways beyond. “Well,” she said, you can’t control people’s choices. Have a good lesson E. Play beautifully.” Mom made this form of assertion to us at almost every send-off, the verb and adverb interchangeable depending on the activity to which we were being unloaded.
Mom almost died two times that week from not being able to clear fluid from her lungs as she slept, once on Tuesday and once on Thursday, and that was when I understood the phrase ‘scared to death’. The few of us there on final week watch gathered around her, holding her hands and each others’ and helplessly staring and praying or rooting for her to regain her breath, and I thought: If it happens like this, I will literally cease to survive. After the episode was over and peace was restored, I left to go outside and have a serious talk with myself, God, and the landscaping.
What the three of us determined was that essentially, I had to survive it. I had chosen to be there, and for me it was at the right choice—but as her daughter, me dying either physically or emotionally from the experience would have definitely defeated the (her) purpose.
She didn’t die on Tuesday or Thursday. She kept right on sleeping. Mercifully, my older sister arrived, and that night I slept through instead of getting up every four hours to check who all was breathing. (I had gotten in the habit of padding into the living room and nodding at Letisa, fearless leader of our caregiving team who was keeping the night watch, on my way into the bedroom, observing my mom’s chest to see its rise and fall, then crossing the room to the cot to check on my dad’s breathing as well, because every time my mom displayed any perceptible change, which happened frequently that week, he came out looking like he had been shot. I was mildly concerned he may die as well, but he didn’t.)
That week I had joked that my mother, who always liked peace and calm and as little artificial light as allowable at all times, was probably having a great time in her medicated coma and wasn’t in a particular hurry to go. Whether or not that was true, there we were at the very end and I hoped she was peaceful. I felt this sort of relief, even pride, that in carrying her through this experience together we had managed to keep her from the painful falls that take down so many with that diagnosis.
My mother was a stunning Alzheimer’s patient. She was quick to recover from upsets and naturally easygoing with a little sarcastic twinkle in her eye that persisted even after she couldn’t speak any more. It was like she was in on some massive inside joke with everyone. And because caregiving is the tough profession whose clients represent the full spectrum of humanity at its most uninhibited, and my mother was so lovely both inside and out, the caregivers fell for her. Truly they loved my mother beginning to end. As a result, not only did they care for and protect her, they shined a bright light into our family, which allowed us to stop staring at the widening gap between what my mother had been and what she was becoming, and instead train our focus on what she was at that moment: a beautiful, giving person whose personality which was still very evident in those looks she gave us, the lattes she loved, and the familiar music she would sing back to us.
We used to sit around the kitchen table, my mom seated in what Letisa referred to as ‘The Queen’s Chair’ as she colored. If she was being particularly interactive with us that day, one of my sisters would test things out. ‘I’m your daughter, momma!’ Carrie might say. Mom would look up, surprised. ‘Oh?’ ‘Yes!’ Erin might chime in. ‘You have three daughters!’ She would pause her coloring for a moment (she was almost always throwing down a deep blue or a bright pink onto whatever were the darkest, most visible black lines on the coloring book page). She might reply, ‘I don’t think THAT’S true!’ or, if she was in the mood to humor us, ‘Well…that would be nice!’
I don’t know that we ever completely managed to sell the idea to her, but my dad had more luck. He habitually cut my mom fresh flowers and either asked her out on a date or for her hand in marriage roughly once a week starting around Christmas of 2014, and one day last summer, she accepted. When I arrived home from New York for a visit, she was wearing his wedding ring.
During those years I took to traveling with my guitar on every visit so I could take it out and play songs, which caused my mother to perk up, wide-eyed, and begin to sing. I’d strum the opening chords to my own song, a tune I’d recorded and passed out on a CD called Letter. I’d strum—A Major, E Major, B Major—and after singing the first ‘Oo—oo—oo—oo’ on my own, my mom would look up, her eyes getting big, and she would lean towards me, and join in for the rest of it ‘woo—oo, ooooooo!’ She would stare into my eyes, nodding, as we sung through the rest of the song, mom voicing some semblance of the lyrics, but hitting almost all of the notes spot on. She had a pretty singing voice that I had barely ever heard from my reserved mama and which sounded a hell of a lot like my own.
Strange, isn’t it? A mother who forgets how to insert and turn a key into a lock became a mother I learned to protect by pretending. I pretended I didn’t know that when I dropped her off at home she wouldn’t be able to get the door unlocked herself, and after pulling around the block and back into the driveway claiming I had come back for some forgotten item, I pretended each time to be surprised that she was still out there on the front porch.
Stranger still: introducing myself to my mother. On the day in summer of 2014 when she permanently lost her memory of having a husband and daughters, my dad called and told me about it on the phone. The next time I saw her, she asked me what my name was. She was very polite about it. I told her. She looked thoughtfully sideways, her forehead wrinkled, scanning her stored knowledge, and said, “I know a Leah. The singer.”
I have separate, distinct feelings of loss around each of the ones I observed my mother experience—the loss of her ability to drive, to walk, to speak. My smart mother has a Master of Science in Speech and Language Pathology. In the earlier years of her disease’s progression, this speech-language pathologist and I went weekly to volunteer at an elementary school bilingual reading program. Driving home from school one day, during which she’d struggled to read through a simple book alongside her assigned first grader, she declared to me, ‘Now I know what it’s like to have a learning disability and feel stupid!’
Because she and I took almost daily walks each fall for years, every fallen brightly-colored leaf looks up at me like one she’d pick up and carry with her. In her later years, she found it calming to break up sticks into smaller and smaller pieces, and now every fallen branch I see is a possible candidate to bring home to my mother. Leaves and sticks. See how she’s going to be impossible to forget?
By Friday, it was visibly weighing on us and on her. She was showing signs of her malnutrition, and we felt it as a tangible heaviness on shoulders and chests. All we could do was hope the allowed dosage of drugs was enough that she wasn’t feeling the process she was going through, but it was tough to imagine she was not suffering underneath all the layers of medication. I sure hoped that she wasn’t—I hoped it was just us hurting on the outside. She had already done so much.
So then, her actual death on the morning of Saturday, August 20, 2016, was just the final one in a series of losses. The sun had just come up, my big sister intuitively woke my dad and I to come stand beside her, and then she took a few peaceful final breaths. I ran around the other side of the hospital bed to lay my head on her chest and listened to her heart beat slow down, at one point thinking it had restarted before realizing that it was my own pulse pounding in my ears.