I'd been fearing a call like this for a long time. It's something you see in films, read about in books, hear happens to other people, although of course, you never want, or really expect it to happen to you. But. Realistically, you know you've got a pretty good chance of its happening, and, to be honest, you know you've got a pretty good chance of its happening more than once. Several times. Too many times. This is life. This is death.
I've lost loved ones before. Grandparents, relatives, family friends, a few young friends of my own. One of the best friends in my life died a year ago, and this marked the most tragic loss in my three plus decades up until that point. I will never forget the moment my friend's mom told me the night she died. I will never forget her phrasing, never forget the image from her description. Never forget urgently finding my husband, telling him simply, "Laurie died!", then sobbing, then shaking my head in disbelief--my brain struggling, straining, to understand the words that never, and entirely, seem real when they are said about someone you love so much. These are those scarred moments that burn into you, and you replay them over and over. Perhaps to make some kind of sense of the tragedy. Perhaps to test the level of emotional depth you're still capable of feeling. To torture yourself maybe? To "process," as they say?
Maybe it's all one and the same.
The first call, on October 23, 2016, takes the form of a voicemail message from one of my mom's aids, simply asking me to call her back.
Immediate red flag.
Her aid rarely calls me, and when she does, it is always because there is a problem.
This is not a good sign.
I'm leaving church with my family on this crisp, sunny Autumn day when I listen to the message. I'm walking in the parking lot. My knees go weak. I feel a kind of numbness surge through my body as fear, adrenaline--I don't know what it is--has its physiological effect.
While my husband gets our kids in the car, I immediately call the aid back. There is no way I can wait even one second. I get her voice mail.
Now I have to wait. I don't want to call my dad in the car.
I'm in an absolute fog as we drive home, hearing the kids talk about spies, or sing, or maybe they're arguing about someone putting a foot on someone else's seat. I'm not listening. I'm staring ahead as we pass by the KFC on Boston Post Road. Party City. Whole Foods. The signs for 95. My husband takes my hand and squeezes it. My palm is sweaty.
As soon as we arrive home, I call my father.
I'd just seen my mom a week earlier, as we celebrated her 68th birthday with over 100 friends and family. My family and I stayed for a week at my parents' house, my childhood home, some 300-or-so miles northwest of our home . A week is short for us, the shortest we have stayed in the last few years (we typically stay 2-6 weeks at a time). Even my kids commented on how we "barely got to stay at Grandma and Grandpa's house." We planned to come back the next month, but even as we spent time with her during this trip, I had an uneasy knowledge that I would be called to their house earlier.
The birthday party was beautiful, set at a local winery and vineyard. People from all walks of my mom's life attended; we shared food, wine, chocolates, and games centering around how well we all knew my mom.
My mom was not doing great. She'd been battling ALS for over three years, and by then, she could not move her body, other than a few fingers, her eyes and her mouth. She couldn't swallow easily (she'd been on pureed food for months) and she choked many times a day. Her speech was very compromised, but she could still spell words out using a communication board, or she could talk by whispering, although it was difficult to form all the sounds. Throughout all of this, her mind was entirely present. One of those tragic stories of an intelligent, lively, giving person being trapped inside her own body. This is ALS.
During that week in October, she had a positive attitude and smiled, as always, but...she did seem...well...weary. And for the first time, during this visit, my mom did not cry. Odd as this may sound to observe, my mom was always known for tearing up when we would say our good-byes (long before she had ALS). Even my 4 and 7-year-old boys would say, "Grandma's gonna cry when we leave." Besides the tears of parting, since her disease took hold, strong as she was, there were other moments when she would cry--from frustration, sadness, disappointment of what she could not do, of how she had to rely on others. During this visit, I wondered if the lack of tears was due to dehydration (she barely drank), if crying required muscles she'd lost, or if she had come to some sort of resignation about where her life was headed. I never asked. So I never knew.
We hadn't even been gone a week from that birthday visit when mom stopped eating.
Two days after she stops eating, I have that Sunday afternoon talk with my father when he explains that my mom has not been able to sit in the wheelchair or eat since Friday.
My heart flutters. I'm sweating. My throat is choking me.
My mom is dying.
It's finally come to this.
The phone call.
My mom is dying.
That day, I talk to my mom on the phone. Our days of regular skyping with my children are long gone. I tell her what I think to tell her about my life, at that moment.
"We went to the Intrepid Museum yesterday," I say. She visited this museum with my family, years ago. "They had this Star Trek Experience exhibit." My mom is a big Star Trek fan. She and my dad even attended a Star Trek Convention in New Jersey with me a few years earlier. She is responding on the phone, in a quiet way. She is still able to whisper. A word or two, and...she sounds like herself. I feel heartened to hear this.
But I need to go back home. To her home.
It still feels like Home to me too.
The next day, Monday, I debate when we should leave. How much time do we have? Do we have weeks? Days? Hours? I need to pack for my family, excuse my son from school, get our house ready to leave for an indefinite amount of time. Do I pack the kids' Halloween costumes? A black dress? Mike's suit?
A warm hug from The Practical Side to The Emotional Side.
We leave the next morning, Tuesday, for our 6-hour trip to that beautiful, small village on Lake Ontario, in Central New York.
The trip is uneventful, and I pass the time driving listening to two episodes of RadioLab which happen to be about:
1) Triage: Who do you save when time and resources are of the essence?
2) A Rapist/Murderer and his Lawyer's Ethical Conundrum: The story just happens to take place in Central New York, mentioning the lawyer from Syracuse just as I pass through that very city, an hour from my parents' house.
My husband pleads with me, "Do you really want to listen to those episodes right now?"
I don't know.
"Why don't you listen to something...happier?"
They're the only ones I haven't heard before. I don't want to listen to a "repeat."
He thinks it's a bad idea to listen to these depressing shows, and of course, he's right, but I become irritated and overly insistent, and so...
Of course I listen.
And I have tears streaming down my face, and my body is heaving in sobs, while I'm driving on 81 North, earbuds in, empathizing with a nurse who takes a man off life support and sees him gasp his last breath in an isolated, apocalyptic hospital during Hurricane Katrina.
Foreboding. Foreshadowing. I know this.
I know this.
It was a good episode.
I am so glad to see my mom Tuesday night when we arrive. She's in bed, with some Law and Order-type show on the television, but she says she wants it off when I arrive. "Talk. Talk," she whispers. I get in the bed next to her.
We are passed the stage of my mom really conversing with me. We are passed the stage of her giving me final words of love, encouragement, directives, telling me whatever it is she might have wanted to tell me. This is okay. She has said it all to me. I have felt it all with or without words. She is a woman of action, of example, and I have never doubted for a second that she loves me and is proud of me. Part of me wishes I could have heard the kinds of things she told my brother, my sister-in-law, my father, who were there the past few days when she knew she was dying, but when she could still communicate in sentences. Then again, don't they say life usually happens as we can handle it? Maybe they were the ones who could handle it, who needed it. At this moment, I do not want my mom or I to mutually acknowledge she is dying.
But we know it.
She still talks some this night. Quietly. I don't understand too much. We use the communication board a few times. We talk about my family, the drive, regular stuff. This is indicative of the kinds of conversations we will continue to have as we wait for the end. Because, right now, we are alive. So we talk about what experiments my son is doing in Mad Science Chemistry, the radio drama War of the Worlds I just saw in NYC, the "How to be a Spy" book my 7-year-old made for his brother.
A friend stops by that night and drops off a pizza and salad for us. Penny and I are talking with my mom in her bedroom, and she is struggling to tell us something, probably important. We can't understand, so I use the communication board with her. The communication board has the alphabet grouped into 4 blocks, and by narrowing down which block the correct letter is in, then by narrowing down which letter within the block you want, you can spell out words together (my sister-in-law and her mom, in fact, patented this specific communication board years ago before my mom was even symptomatic; they donated it to the ALS Association). We use a wooden letter-opener as a pointer. A week ago, my mom would click with her tongue to indicate we were at the correct letter. At this point, she can't use those muscles to make a clicking sound anymore, but she can move her tongue out enough to indicate an affirmative response. This is how ALS works. You slowly lose abilities, and you must constantly problem solve, at each phase, a new method of doing, well, anything and everything, based on what abilities you have left. Thank God my mom has always been an amazing problem solver and a practical person. She never complains.
Penny and I are eagerly awaiting what my mom is trying to tell us. I use the board with her and she spells the letters WH.
"Where?" I guess. If my guesses are correct, it saves the time and energy on her part of having to spell out the whole word.
This is correct.
We move to the next letter.
"Pizza?" I guess.
She gives me the affirmative response.
I don't even have to think. My mom and I have always been excellent Celebrity partners. "Where is the pizza from? Is that what you're asking?"
Penny and I laugh and my mom smiles.
"We were waiting for this big meaningful revelation!" We joke with my mom. "But hey, yeah, I'm curious too--where is the pizza from, Penny?"
This is the last night my mom is able to spell out words.
Wednesday morning, my mom can no longer move her tongue to indicate yes or no.
I hate this cruel disease.
Hate. Hate. Hate.
Reevaluate. Problem solve. Again.
What is left? What can she move?
My mom can raise her eyebrows.
So we go with this. This is the new sign for our yes/no questions.
Thank God we are a family of game-playing. 20 Questions skills come into play now.
During these days, my mom receives many visitors and they show love to her, her children, her grandchildren, her husband. She has been a staple in that community for decades. She's taught Sunday School, volunteered at the elementary school, served on the Library Board and volunteered at the library itself. She has donated baked goods to fundraisers, sewed clothes and dolls and blankets for countless people in the area. She has sent out birthday and anniversary cards to hundreds of people a year--her relatives, her friends, her friends' grandchildren, her children's friends, her children's friends' children...And if you weren't touched by her in this regard, you would have at least seen her walking her route around town, a few miles, twice a day, Summer or Winter. Rain or shine or snow. That's not just her desire for good health. It's her personality. Just put on ear muffs. Wait until the downpour stops then head out quickly. Adjust, accommodate, make it work.
So when it matters, a community stands by someone like her.
People drop off food--coffee and donuts in the morning, casseroles at night, pizza in the day, fruit and nuts for snacks, cakes for dessert. People come to pray with my mom, sing to my mom, visit with my mom, call my mom, play with my kids. I am forever grateful to the community for that. The pastor's wife at my parents' church, who is also a nurse by day, stops by before and after work to check in on my mother (and us). I am forever grateful to her for that. My mom's nurse through Medicare stops by every day and calls my cell phone about 4 times a day to check in with me. I am forever grateful to her for that. My husband takes time off of work to be the primary caregiver for our children, so I can devote my time to be with my mom. Forever grateful. One of my dear friends from my home makes the 6-hour trip upstate to spend the night, bring my mom flowers, visit with her, support me. Forever grateful. So many friends text me, email me, leave me messages, just to check in, to pray for me, to let me know they are thinking of me, they are with me. Forever grateful.
These are actions which help the helpless. When you are watching someone die, when your heart is in your throat for all of your waking hours, when you can't sleep at night because you are terrified to hear footsteps bringing news of death, when you can't eat because you keep crying when you try to swallow, when you want to hold onto whatever moments you have left, because at least you have them...this is something that can bring some comfort. Make you feel less alone. And really, that is the most you can hope for when you're walking through the shadows of death.
Thursday, Chris, the pastor's wife, says I should tell my mom whatever last words I want to say to her.
I don't think I can do this.
"I've told my mom all that I need to say," I hold back tears. I feel like I am always crying now. "I tell her I love her. I can say that. But--every time I try to say anything else sentimental, I start crying."
"That's okay," Chris tells me. "You can cry in front of her. You can tell her this isn't fair. You can tell her how you feel. She understands."
I nod, but I can't respond.
Grief has a way of squeezing the words out of you.
Late Thursday night, when I am lying in bed with my mom, I muster up the courage to give her this talk.
I have written tributes to my mom before, but I cannot speak any words out loud to her without breaking down. I struggle, but I manage. And I let myself cry in front of her. Something I try, very very hard, to avoid. I don't want her to feel sad that I am feeling so sad. But I cannot avoid it now.
I thank her, I tell her all the wonderful things I feel about her, what she has taught me, what I will remember. I tell her that I know she can't give me "last words" now, but that I know she is proud of me.
I recall a time, over the summer, when I couldn't understand how she wanted me to adjust her body. I told her, "I"m sorry, Mom...I know it'll get harder for me to understand you, and I'll try my best, but I don't want to disappoint you if I do it wrong."
She started to cry then, and managed to say, "You could never disappoint me."
I cried too, and I cry relaying the story to her this Thursday night.
I know she appreciates me, she values me. And I appreciate her. I value her. She gave her life to raising her children, and she did so in the most creative, precious, loving, self-sacrificial way.
I am forever grateful to her.
Friday morning, I check in on my mom at 6:45. She's been at home this whole time because she has not wanted intervention to keep her alive. No breathing equipment. No feeding tube. DNR. She is taken care of in her home. We keep her as comfortable as we can by using the methods we are able. My local brother and his wife are in the home from morning to night (and my sister-in-law even spends two nights with my mom), my other brother and his wife, an hour away, visit almost every day. My kids, my husband, my dad--we are all in the house. She has aids who care and friends who visit. My mom is not alone.
What worse development will we observe today.
This morning, she can't swallow her comfort medication.
The pastor's wife messages me at this hour, so, knowing she is awake, I call her and tell her this update.
"She's not breathing the same. It's more shallow. And...her hands are kind of purple." Chris has clued me in to some signs when the end is near. Up until this point, my mom's Medicare nurse has made me feel that she could pass away at any moment, but Chris has given me reason to believe it could be days, not minutes.
But today--this is different. The signs are there. It will not be days. Today, I tell myself in my head, today, my mom is going to die.
Today is October 28. It has been five days since I received that call on Sunday.
Around 8am, Chris stops by before work. She takes my mom's oxygen level; it is now in the 50s. It should be close to 100. I am worried.
I am very very worried.
My brother and sister-in-law come over in the morning. My husband's parents are coming today from New York City, as well. My other brother and sister-in-law are coming out this afternoon. My local brother and I both know her breathing is more shallow. I have to put my face to her lips sometimes to check for breath. We have spent hours on this bed together, with my mom during these last few days. A lot of the time, we are just talking about life, updates, politics, radio shows. My mom can't respond, but we know she can hear. I haven't spent this kind of time talking to my brother, uninterrupted, in years. I point out to my brother later that this is how it sometimes was with our mom anyway, in group settings. She would be present, listening, letting us carry on an intense conversation. She was happy just to be with us, whether she interjected or not. And here we were again.
I'm alone in the bedroom with my mom around 11am. I get out her tablet.
"We haven't checked your Facebook account in while, Mom. Do you want to do that?"
She's not able to raise her eyebrows anymore, but she makes a small sound.
"I hope you're okay with this." Up until this morning, I have been very conscientious of receiving confirmation from my mom about anything--moving her to a different side, when she wants to take the medication, whether she wants a light on or off. I have always wanted her to feel as much control as possible throughout this whole disease. When visitors see my mom on the bed and inform me, "She looks comfortable. Not in pain." I say out loud, in front of my mom, "Maybe. But if she were uncomfortable, she can't really show that anymore. She can't make facial expressions or talk, and she can't move at all, so it's very hard to know if she's in pain or not, or how comfortable she is. She might be comfortable, but she might not be." I want my mom to know that either way, I am validating her potential feelings. If she is internally screaming, "I am so uncomfortable! Don't think I'm comfortable!" I want her to know, I hear that too.
But today...today...I cannot get a response to any yes or no questions. Today, I have to act on my own. What I think my mom would want. What I have learned makes her comfortable.
While I'm reading her a few Facebook updates, she starts to swallow.
This is odd. Very odd.
She hasn't been able to swallow all morning.
I tell her I'll be right back, and get the experienced aid who is in the kitchen. "She just started swallowing--a lot," I say.
"That's normal," she tells me.
Normal? Normal for what?
But I know what it must be normal for.
Normal for dying.
The aid follows me into the bedroom and we give my mom a little water on a sponge. Her breathing is so shallow. She is taking longer pauses between breaths. I have heard about this. I suddenly know what is happening.
I know what is happening.
I tell the aid to get my dad; I ask my sister-in-law to get my brother.
My husband says, "My parents are on their way. Should I call them? Should they talk to her?"
"Sure," I tell him, almost absent-mindedly. "You can call them."
I appear calm, my husband tells me later, and I feel that my voice and body are behaving calmly. I'm looking for my dad, my brother. My kids are playing with a neighbor in the living room.
My mom is going to die. I am screaming on the inside. Panicking. It's the feeling of a dreaded roller coaster ride starting, one you've been waiting for, but immediately regret boarding. A roller coaster that you now must ride all the way through, in order for it to end. In order for you to get off.
I have been waiting for this moment since I arrived a few days earlier. Dreading it. Expecting it. But now it's here. It's really here. And when it is really here, what do you do?
I go back to the bedroom, and hold onto my mom's hand again. I let my hair fall in front of my face while I cry. The room becomes full as those present surround the bed, but it's quiet.
I say a few words to my mom, about my mom, but I don't recall what exactly; there is a blurred quality about what I remember from this time-abyss experience. I ask my dad, "Do you want to say anything?" I feel as though I am hogging her last attention.
My dad shakes his head and says no, that's okay, he's said all he needs to say. He stands on the other side of her.
My mom is not breathing.
I say a prayer out loud, somehow, through tears, thanking God for giving her to us. I don't know what else I say. My dad, or the aid, checks her pulse. I think I say that it seems like her heart is still beating. We're talking about technicalities right now.
I can't believe this is happening.
She's definitely not breathing.
My mom has died.
And that's how it happens.
Have you ever wondered what it would be like to watch a person die?
My phone lights up. It is a text message from one of my mom's longest, dearest friends, Maureen. She lives in the area and has been visiting my mom every day. She has been reading to my mom, feeding my mom, baking for my mom (and all of us!), for months. She had to leave the day before, as her 9-month pregnant daughter, Elisabeth (one of my best friends) was being induced. Maureen is touched that, even as my mom can barely speak, she still asks, "How is Elisabeth feeling?" Of course my mom wants to know how her dear friend's pregnant daughter is doing. It doesn't matter that my mom can't feed herself or brush her own teeth, that she can't scratch an itch or cough if she needs to, that she can't type on a computer or pick up the phone to call someone. This is her friend whom she has shared her entire adult life with. Of course she wants to know how Elisabeth is doing, just as she wants to know which restaurant the pizza is from. The disease has stripped my mom's body from herself, but we are amazed that she has not let it affect who she is inside. How does someone do this? (My mom has answered this type of question before with a simple, "Jesus," or "God.")
As Maureen says good-bye to me the day before, she and I both feel that the baby will be born on Friday. And my mom will die on Friday. We don't say this in words, but we sense this in each other.
The text message is a picture of the baby who was born that morning.
The aid has told us that in her hospice training she was taught a person can hear for up to four minutes after they stop breathing. I tell my non-breathing mother this piece of medical knowledge and assume we are in that window. So, I share the message with her, that I know she would want to know.
"Look," I tell her with a little laugh through my tears. "Elisabeth had her baby, Mom." I hold up my phone to her eyes. "See?"
This is life.
This is death.
Many things happen after this. The emotions of a death are not long left unaccompanied by the realities of living in this world. My brother and I call my mom's siblings, her mom; I tell a few of my mom's closest friends. My dad calls a few more. The Medicare nurse comes, there are calls to the doctor, I speak with a First Responder, a Police Officer, an investigator (long story, but the things you learn!).
I speak to my children, who guess that their grandma has died before I even am able to tell them. We cry and hug; they want to see her body. My 7-year-old feels the remorse of the living when he panics, saying, "I didn't get to say good-bye!" I point out he has said he loves her, he said good morning, read to her, and that he can see her body now and say good-bye. Both my 7-year-old and 4-year-old comment later on how they know that talking to a dead body is not the same as when the person is alive, but in these moments, they accept this as closure. They come to her bedside, tell her they love her, and tell her good-bye. My 4-year-old continues to enter her room over the course of the next hour, every few minutes walking in with my husband, standing on a chair by her side, and talking quietly and earnestly to her. At one point, I hear him say as I pass by, "Mommy's very sad because her mom died, so we need to be extra nice to her." Another time I hear him emphatically telling her his name, and emphasizing how it will always be his name. No matter what. Sometimes, he simply says, "You're dead, Grandma. And you're always gonna be right there."
I feel the remorse of the living when I realize I did not give my children presents my mom had me get for them; I had intended to gift them that morning. I take cues from my boys and hand them the presents now. They open them, by my mother's bedside, and thank her anyway.
Have you ever wondered how you would respond to having a lifeless body of a loved one in your house?
It is bizarrely...not that strange.
Or maybe it is so surreal it just feels...not strange.
It is hard to let her go.
The funeral director comes; he lets me zip up her bag; these are the details you just don't imagine until they happen. My other brother and his wife come. My in-laws arrive. Other friends stop by, as well. There's food delivered by a church member. But all of this blurs. All of this pales. It's the 8-line resolution in a play once the dramatic question has been answered. There is more to come. So many plans to be made, so much thinking, organizing, deciding, writing. This will come. There is time.
But the strong moments, the ones I might replay over and over in my mind, those are the ones that last. That are burned in forever. Blurred as they may be. Which is why I write them down here. Because I don't want them to be blurred. I want to remember. As I wanted to remember giving birth to my children--the waiting, the pain of labor, the elation of new life, the bubble postpartum, the need for that sense of community. It is completely the opposite of giving birth--and so very much the same.
I can't think of the right button to end this post. I've been writing this entire entry as fast as my fingers can type, but I pause here. There is no real close to this.
Or maybe I have already closed it. Several times.
And I can't let the 8-line resolution lie.