I headed into last year - 2015 - with the weight of my mother's illness
and imminent death on my shoulders. Now, as we head into a
new year - 2016 - I feel both guilty for leaving her behind and excited and relieved
for what's ahead. So I feel compelled to write about the experience of her final days. Like everything, this is through my lens.
I wrote this post not only because I felt it would help me process a difficult experience but because I feel like this is the stuff no one talks about and we need to. Because when I was going through it, I felt like my experience was so unique but I knew it couldn't be. And the more I talked to people, the more I realized just how common my experience was.
I present it below in its raw state with little polish or gloss. Forgive bad grammar or any other sins of an English major as they've been sacrificed for stream of consciousness.
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I leave the house to head back to the city. My mother is sleeping and barely lifts her head to say goodbye. This is a first as she generally pushes through whatever to pretend she's ok, always thinking of others before herself.
I somehow know I won't see her alive again.
...
The next day she's a bit better. She eats pulled pork and ice cream. Lots of both. Significant because she's never been much of an eater her whole life. "Tiny," the family calls her in an unironic way. She has always been small but now she hovers around 80 lbs. She needs to eat, I say, as someone who uses food as the solution to most things, and as a practical human who has been hearing this every day of my life from my mother. I'm told that she doesn't need to do anything she doesn't want to. This is what hospice is. Liberation. Finally the stage of life where you can do what you damn well please. Eating and digesting, I'm told, is hard on the body, using precious energy she no longer has. There is no longer eat to live but live to live.
...
She gets sicker. The hospice nurse thinks maybe a stomach virus. It's funny - in a short time, they've come to love her so they don't want to believe the worst. We want to believe it's a simple virus too but really it's the body incapable of processing nutrients. It's rejecting them. Shutting down. Of course we don't know this for sure yet, choosing to believe she will be better once the food passes through her system.
My aunt, my mother's older but not eldest sister, visits. I encourage her to. Once there in my mother's house, she sees the truth and how different she is even from two weeks prior. My aunt's two hour visit turns into six days. We joke that her trip is like that fateful trip the castaways' took - the three hour tour that ended up on Gilligan's Island.
...
I am still in the city, trying to decide whether to go home or stay put. We've had false alarms before. Too many to count. My goodwill at work, my goodwill in life, I feel is drying up. I'm like the girl who cried wolf. She's dying. Wait, nevermind. No really, now this time. Oops, nope.
My sister calls and say the verdict is two weeks. Stay put, she says, and come the weekend. It's now Wednesday. I pull myself together - whatever together is possible at this point - and head to my therapy appointment. We talk about how soon I'll be an orphan. My therapist - who I've just started seeing - is leaving for a three week vacation. Surely by the next time I see her, my mother will be dead. Time's up, settle the bill. As I'm doing so, I see a text from my one sister, "Come home now," it says. I smile at the therapist and wish her a relaxing vacation. 50 minutes of therapy undone in a single text.
...
I take the long 40 floor elevator ride down and explode into the phone outside on Pine Street. How can you send me a text like this? A fucking text? What the fuck does this mean? What do I do?
I'm angry but I understand no one has answers. I feel overwhelmed and frozen. How do I get the long 100 miles to my mother's side? What do I do? How long will I be gone? Is it too morbid to pack a black dress? Should I call someone? Can I do this by myself? Should I call someone? Who do I call? Will I make it in time to say goodbye? I get on the subway to head to my apartment remembering to email my acupuncturist in a matter of fact way that I won't be at my appointment today.
Please excuse Lynn from acupuncture today. Her mother is dying. Sorry for the inconvenience.
My brain is like a junk drawer, filled with dead batteries and doll parts. I can't think straight, tears are streaming down my face and I feel like I'm choking. I'm not sure how I make it to my apartment, but I do. I start throwing things into a bag, not sure if I'm packing for days, or a month. Not sure how long I'll be gone, I throw my cat into a bag too. It's too late for him to go to boarding, so I decide to bring him with me. We are both disheveled and unprepared.
...
My sister calls as I am calling a car service to take me out to the Island. It's not cheap, but I can't deal with taking public transport at this point. I need to get there as soon as possible, and would be in no shape to drive myself. She's calling because they are starting to heavily medicate her and by the time I get there, well, she may be alive but even if she is, it will be too late. She won't know me or be able to speak. I get on the phone and hear them telling her that I'm on the line. The line is silent. She can no longer talk. I try to talk but words don't come and, ever self conscious, I feel a little but stupid so I mostly say nothing. Later I'll learn that she was mouthing words with no sound and I feel even worse for not saying all the things I wanted to. My car arrives and I look around my apartment thinking how when I return, life will never be the same. I leave the apartment with a mother, and will return motherless.
...
The driver immediately starts complaining about how much traffic there is, how long a drive it will be. Ever since I have moved to NYC, I do not understand why cab drivers complain so much. I pay you, you drive me places. Isn't that the deal? It's not like I'm getting into some random person's car and demanding a ride. It's a cab. I tell him that my mother is dying and that I would never normally take this long a drive to the Island. In rush hour. This is not my idea of fun either. I am not some kind of pampered princess. So please, give me a break. He promises to do his best to get me there in time, and then spends the rest of the ride alternately congratulating himself for beating the traffic and telling me about when his own father passed away. I don't want to hear it, but I politely make small talk. I feel like this is a situation where I could be rude and tell him to shut the fuck up, but decide not to. Sitting in silence doesn't seem like a better alternative.
When we reach my mother's house, he helps me to the front door and wishes me well. He'll be praying for me, he says. He seems nice, my sister says. I look into his kind eyes, and I'm glad that I didn't tell him to shut the fuck up.
...
Luckily, I've made it in time. In fact, as will soon be evident, I will have plenty of time. It's Wednesday evening and she won't pass until Friday evening. We all spend the next 48 hours in a bizarre waiting game. What do we wish for? More time? For her to pass quickly? It's a lose lose or a win win, depending how you look at it. We give her morphine and some other drug every hour under her tongue. I am initially tentative but get good at it.
My aunt stays with me - with us - at night, while my sisters and their families head home for some rest, although no one is getting any. At three in the morning, I can't get her mouth to open to get the morphine in, and text my sister to ask her what do do. She responds within an instant. No one sleeps. We wait. We fill morphine syringes. We watch Grace and Frankie on Netflix. At some point, someone opens a bottle of wine. We wear a path back to my mother's room, where each of us spends time with her, crying, saying goodbye. I put the latest episode of Real Housewives of New York City on for her. "You missed this week's episode," I say, "And it's a good one." I also put on 50s radio station. I sit by her bedside singing along to the Big Bopper. Chantilly Lace, had a pretty face and a ponytail, hanging down... I'm assured she can hear us, and so I hope this music is bringing back good memories for her. I tell her how great a mother she has been and tell her it's ok to go and that we will all be ok. I hear my aunt in my mom's room telling my mother it's time to go. She's essentially yelling at her, as the bossy older sister. Like how she might have yelled at her for borrowing her clothes. That's it, it's time to go, go Tiny go.
My mother is stubborn. She gets it from me.
...
Hospice staff come in about twice a day, mainly to see if she's still alive. Some of them cry and tell us how great a lady she is, how kind she was to them, and how special she is. How she talked so often of her children and family and how she was ready to go. This we know, as she has told us herself.
They give us a book essentially called "What to expect when you're expecting someone to die." We read it and look for signs and milestones. She's checked off mostly every box, so it shouldn't be too long now, we think. I wonder how people without families are treated at death. We're the ones medicating her, keeping her comfortable, wetting her lips, clearing her mouth of foam, changing her, cooling her face, holding her hand, sitting with her. I look at my nieces and nephews and tell them, like it or not, they have to take care of me when I'm old. And no putting pins in my diaper.
...
Hospice decides she's waiting for something. Is everyone here? Yes. Well, then, maybe she doesn't want to die with one of you in the house. We decide it's me since I haven't left the house in days. "It probably is me," I say. "It always is," says my sister laughing. I ignore the dig.
Alas, it's not about me, and I return from Starbucks to find that she is still with us. Barely. Her breathing is getting more and more labored. The staff tells us it will definitely be today. An old friend whose mother passed several weeks prior sends over pizza, a Godsend as we are all too numb to do anything, nevermind remember to eat. This is one of many gestures that I tell myself to remember and pay forward. Yes this, this helps. Do this. Remember this.
...
Around 8:45 pm, my middle sister calls out from my mother's room that she believes it's time. She's now making odd breathing noises. Ahh yes, the death rattle, we all look at each other and say confidently, having read about it. This is what it sounds like. We surround her bed, all of us crammed into her small bedroom. I sit on one of those medical commodes - top down, it's never been used. I laugh that it's kind of comfortable. Everyone is crying but I won't. I'm closest to my mother's face and I feel like someone has to keep it together so she feels ok about going. That's what I would want.
...
Before it happened, I wondered if we would know when it happened. I needn't have worried. Later, much later, my sisters and I argue a bit about whether it was peaceful. I say it was. They say because it lasted for days, it wasn't, with her gasping for breath, jerking involuntarily, foaming at the mouth. I disagree. In the exact moment of her passing, we were all with her. She took one final breath and that was it. Her skin, which had been purple for so many years due to lack of oxygen, turned white and her body finally stopped struggling. There was no mistaking what happened.
I finally let myself cry. You did so good, my sister says.
We leave the room and I call my mother's siblings one by one. I learn my cousin's wife had a baby that evening. There were too many of us so their souls swapped places and will forever be linked. We call hospice who calls the undertaker. I laugh that there's a surcharge because my mother died after business hours. She would have hated that and surely hung on to the next day had she known. Hospice comes and disposes of all of her medication. My sister jokes that my mother's leftover Xanax is her inheritance. At this point, I'd be ready to give up my share of her house for it. It's more precious than gold.
My mother's doctor calls. She's crying. She was more than just a patient to me, you know, she was my friend, and when she told me she wanted hospice care, I cried because I thought she had more fight left, because I wanted her to.
I know how she feels.
The undertaker - a wonderfully friendly man from our small town - tells us to go outside on the back deck while they remove her from the home. It's too hard to watch, he says, as if we don't know what's happening. As if we can't hear the clanking of the gurney jerking its way down the steps. A few weeks later, after the service, after she's laid to rest, I see him volunteering, passing out water along the course of a 5K race in town. Always looking for more business, I joke.
The house is quiet. My mother's oxygen machines are turned off. Their purpose served. I go into my bedroom with one of my mother's blankets and do what I have not been able to do in years: Sleep.
