More than one person has said to me recently: “What doesn’t kill you, only makes you stronger.” Well perhaps, but it sure beats the shit out of you. Am I stronger? No doubt. I’ve changed in ways I never dreamed over these past couple of months. This past year, in fact, has left me an entirely different person on so many levels. Right now, I feel stronger than ever and broken down, all at once. My entire body feels battered, my eyes hurt from being open for so long… from crying, from dim lighting in a small room, that I’ve been sitting in for 42+ hours now, as I listen to my mother die.
It has been such a very long road to this place in time, but it’s funny how the expected can be so unexpected and difficult anyway. When the phone rang, at 4:00 A.M. two days ago, I certainly knew what it probably was. My hands shook as I dialed the Hospice House back. Stumbling from my room, I’d missed the call. The nurse picked up right away. “Dawn, your mother’s respirations have dropped to 4-5. We believe she is slipping away.” To be honest, I had no idea what that meant, the first part. Those numbers meant nothing, but the message was clear otherwise. I stumbled back to my bedroom to put clothes on and tell my husband what was happening.
Let me back up. My mom has been at Hospice House for two and a half months now. When she was moved here in October, we thought her death was imminent. It was shocking to us all. She has suffered from the symptoms of Huntington’s Disease for twelve years now, slowly, horribly disappearing, in bits and pieces: Memory by memory, personality trait by personality trait, mannerism by mannerism. She has slipped from me in small enough pieces that one day when she was suddenly so different from the mother I’d known and understood, danced and fought with: loved, I was lost. I was angry and bitter that we had not been given that time in our lives when we could rectify the things we’d raged against when I was too young to understand some things, and the things I felt she needed to apologize for. I wanted to work those things through: face them head on and then work it all out to a healthy conclusion.
Suddenly, my mother wasn’t that person. Her mood swings, her anger, her crazy decisions, were all a big question mark. Was it Huntington’s or was it her? How could I hold her accountable for things she might have no control over? Then also, how could we reliably work through all those things I wanted resolved? As the months and then years slipped by, I had to let that neatly packaged dream go. And let me tell you, I resented it. I resented her: for being sick, for stealing my moment of standing up to her, I resented knowing that she would leave me with so much unresolved stuff. Letting go of all that came first. That took a long time, a very long time. It was an internal struggle that took so much out of me, that some days I really questioned whether I’d survive it. Then, I had to accept that my mother would continue to decline and I would continue to lose her, in bits and pieces, until this disease killed her.
And so here I sit, in her room, listening to her struggle to breath. Each shallow, short breath fills this room with the sound, though her chest barely moves. Her body has grown still and she’s just holding on to something that is beyond any of us, certainly beyond me. But what is most amazing, is that she is still there. The things that were such a part of my mother are still fighting to be acknowledged: her tenacity, her strength, her independence and fire… all of that has continued to come forth, as she refuses liquids or the efforts of nurses to swab her mouth: clenching her jaw and scowling each time. “Many of her movements are probably reflexes at this point,” a nurse tells us. I don’t believe her. I can see my mother, in her eyes. I tell her to blink, to let us know what she wants, so that we can do it her way. She proves me right, blinking to let us know that she doesn’t want my sister or I to leave her alone here. “Many mothers just can’t leave, with their children in the room,” the nurses tell us. But when we tell her we are going to leave, she clenches my hand. When my sister says: “Do you want us to stay with you Mom?” She blinks twice, strongly, undeniably. When I say: “How about if we promise to not climb into bed with you, at the same time anymore?” She wrinkles her forehead and gives us the wryest of smiles: my mother’s smile. When the wrong song comes on Pandora, she scowls again and we change the station. She has continued to tell us what she wants, or what she doesn’t want, even as she is barely there. “Ok Mom, we’ll stay. We won’t leave you; but then you’ll have to leave us instead.”
After eight weeks of visiting every single day, I had not visited in two days because we’d had the flu in our house and while I hadn’t gotten it, I was wiped out. I’d been up the entire night before, with my sick husband. I’d taken him to the hospital that morning and stayed the entire day. I’d gone to bed at 1:20 A.M. trying to work on my novel, that had to be submitted to a publisher by December 30th, in the very long hope of seeing it published. I was exhausted and worn down when the call came only two and a half hours later. When I hung up, I was gripped with such a fear, that I sat on the stairs for a minute, and then panicked: that that would be the minute that she died and I would have missed it. My mind raced as I drove off in the dark alone, speeding on my quiet street for the first time. I slipped through a red light, unwilling to let that few seconds be the ones I missed. Dashing in the door when I arrived, her breaths were so shallow, so strained. Her face was so sunken and pale. I called my sister (an hour+ away) sure that she would not make it in time.
Now, I have been in this room for 42 hours and counting… breath by breath. I am paralyzed, afraid to leave. I stepped outside late today and realized I hadn’t felt fresh air in nearly two days. My body aches from sitting on a lousy bench, where I barely slept for less than three hours last night. Both my sister and I know that we’re not making sense anymore. We know that we’re loopy and emotional. “Are you taking care of yourself?” Everyone asks that. Of course not, that seems impossible right now. My daughter drops by to deliver antibiotics for my sinus infection, some clean jeans and underwear (I’ll wear this same black shirt for three days it seems), and sandwiches that she thoughtfully made for us. “Mom, you really need to take care of yourself.” I know she’s right, but I tell her what I’ve always believed: “Honey, there are some things in life that are too important to be reasonable. There are once in a lifetime moments, when you do whatever you have to do. The easy ones are when a dear friend is in town for one night and you stay up way too late, and feel bad at work the next day. The hard ones are losing your mother, losing anyone you love. I know that this moment will only come once, but there will be many more chances to sleep right, eat right and get some exercise, later. I love you for caring, but I hope you learn this from me, now.”
I’ve moved from the bench, to her bedside holding her hand, to lying beside her in her bed, or walking down to the “sanctuary” to have some quiet and privacy, to call friends and family, countless times now. I am so far beyond tired or “off” from weird food (too many Ritz crackers, too little fluids) and this strange, strange place we are living right now, waiting for her to die. I lay awake all night last night, listening to her breaths. In the long gaps, when she didn’t inhale, I counted silently and thought: That was it, the last one. And then, she inhales again and I start over. Counting dark sheep.
As I gaze into her eyes, sometimes she gazes back and I wish desperately to know what she is really thinking. I say my guesses out loud: “Don’t be scared; you’ll be ok; just let go Mom” and she frowns. I say: “I still can’t read your mind,” and she smiles, faintly now. In the past six hours, the facial movements have become much more limited. She raises an eyebrow subtly or flinches, blinks less clearly. As I look at her eyes become milky, I believe that she is seeing things we can’t see. Maybe she is still reliving early memories (read Oh Holy Craziness… Night), but I feel as if she is glimpsing something beyond here. She makes subtle gestures as if responding to things I can’t see or understand. Has she already seen death? Is it scary or the infinite mystery so many have imagined? Is there light and goodness, or something else? “Mom, can you hear me? I’m here.” Blink.
I will spend another night here, counting her breaths, until they stop. I’ve debated over and over whether to just go home, get some rest and join the living for a little while. But I just can’t. I step out to my car to get something and I feel her hand squeezing mine, I can see her eyes blink: “Stay, please stay.” As both my sister and I have questioned what is right, what we should do, we’ve come to agree that Mom seems to be keeping us here. My sister and I have shared more honesty, and honestly, in the past 42 hours in this room, than we have in our life. My mother, no doubt hears that and is blinking. She gets that last word, silently, as my sister and I hold hands over her heart.
I continue to write, on my corner bench, pouring my thoughts into the revisions that my novel needed. It will either be better, or worse because I was so tired, so raw, but I finished it today and submitted the manuscript to a publishing house in Massachusetts that was open to unpublished, women writers, until December 31st. It’s taken so much out of me in these past few months, balancing it all. Would I do it again… that may take some time, some distance, to see a different perspective and know if it was all worth it. Right now, I can’t be anywhere else, until the room becomes quiet, and I feel the void that I’ve been facing for so very long. I’m diving head first into that dark void, and I hope the answer later will be: “ Yes, it was worth every sore muscle, every tear and every long moment in this room.” I hate to close my eyes, hate to miss a moment, but I know I must sleep. I pray for silence when I wake, a terrible prayer but one I hope for none the less. Safe journey Mom; I am here.
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