The Waiting Game

Death changes everything.

Jessie Miller saw her life in a whole new light after watching her grandmother on her deathbed. This event brought Miller’s family together, and it gave her a new way of thinking about the forces that had ripped them apart in the past.

 “The Waiting Game”

Day 1

A group of doctors surround a middle-aged woman. She has short, brown, unkempt hair and is wearing a pink sweater. It looks like she has not slept in days. She is crying as she speaks to the doctors.

Oh whoa, that’s Mom.

I approach and gently touch her shoulder. After the doctors walk away, she explains to me that Grandma wants to die…

We enter the room on the second floor of the hospital in the Surgical Intensive Care Unit.  In the middle, my grandmother is lying in bed.  She is very pale without her usual blue eyeshadow and does not move much.

I slowly walk up to her and say, “Hi, Grandma,” and hold her hand.  

My mom walks in after me. “Why do you want to die?” she asks Grandma in an angry tone. “You can live. I’ll take care of you. You can move into our house and we will get you someone to take care of you during the day. You could live. I don’t understand why you want to die all of a sudden. You wanted to live just yesterday.”  

My grandma holds up her hand and keeps repeating I don’t want to, I want to die, I don’t want to take the next step, I’ve been a recluse for 15 years, I don’t want to live, I want to die. My mother leaves the room to talk to some doctors and my grandmother turns to me and begins to explain herself. I tell her, “I understand and accept your decision, Grandma.”  

“You’re very intelligent,” she says. “I can tell in the way that you speak. Please make my baby understand.”  

I didn’t think I would cry this much for a woman who has never been a good person. I didn’t think it would hurt to watch her die because I never cared for her much in life. I never thought she would actually die, which sounds stupid, but she has always been a bull of a woman, self-centered and feisty. I never thought I would find her humanity in death.

She becomes agitated over the next few hours as people continuously ask her the same five questions about wanting to die. She raises her hands like she’s swatting something, swatting away any disagreement or convincing arguments. She begins to doze on and off. As a family, we talk to a man in charge of hospice named Dr. Gauge. A few hours later, we talk to a hospice nurse named Maryam (whose own mother was currently in hospice).  And in between the two, we talk to another three doctors, including a cardiologist that tells Grandma her heart is damaged and she is making the right decision.  

The amount of professionals you have to talk to in death is ridiculous.

When Dr. Kelly comes in, my mom begins to freak the fuck out. “I really don’t want you in here,” she says. “You are the whole reason she is in this mess and wants to die. You didn’t listen to me. It wasn’t a hernia.” My mother drains her soul.

“I am sorry,” the doctor says, sad and apologetic. “I take full responsibility for this. You’re right, I should have listened to you. You have to know I’ve treated her for many years and in a way, she is like my own family. I am so deeply sorry.”

“How could you say all of this now? This could have been prevented. I am sorry I am so mad, but she wants to die—”

“Mom, you can’t blame him.”

~

Oh, how we comfort the one who has wronged us. Excusing away decades of abuse, claiming it’s all in the past when instead it’s a vicious cycle. A cycle that hurricanes on everyone. Blood lines are miniature contracts rolled up in scrolls that deem obligations we don’t have. If you’ve never apologized, why do we have to be apologetic?  Grandma, you’re going to have one of the most comfortable deaths out there and you don’t even realize how wrong that is, how wrong it is for you to have.

~

The ETHICS question of a lifetime presented to ETHICS101:

A woman initially goes to the hospital for three holes in her stomach that are leaking stool.  She is rushed to the ER and receives emergency surgery, bags in her stomach.  Shortly afterwards, she has a heart attack and decides she no longer wants to live. She is a “Do Not Resuscitate” and refuses care. The only medicine she will accept is a painkiller called deladin. She talks to several doctors and professionals about her decision to die from 8 in the morning to 3 o’clock in the afternoon. She is very adamant about her wish and explains in sound mind her reasoning for wanting to die.  When she is finally transferred up to hospice and the procedures of hospice are explained, she changes her mind and decides she wants to live.  Arrangements begin to be made to transfer her out of hospice.  Within 30 minutes, she starts repeating the same apology to her family (for putting them through an emotional rollercoaster) over and over again. She becomes confused and can only remember she is in the hospital but thinks she is in the bathroom. She does not remember any of the last 24 hours. She is transferred down to a Cardiac Intensive Care Unit and the doctors approach the person who has her power of attorney on what to do next about her care. The doctor asks if they should continue or stop care. You have been made the official decision maker, what do you do?

It’s decided that Grandma will receive care for that night and then be brought back up to hospice the next day. She will only receive wound-care for her stomach. She is briefly taken off her deladin, and in that short time, my mom asks Grandma if she wants to live or die, and she says she wants to die. Because she is on a floor that tries to keep people alive, she is forced to receive care until morning.

Day 2

At 1 am, Grandma has had enough and again begins to refuse treatment. All medicine and care is stopped, except for injections of morphine when she requests them.

My mom stays overnight, and when I return the next morning, we are waiting for a bed to open up in hospice. Grandma is almost completely unresponsive. Her head hung back with her mouth wide open, she gargles and coughs every once in a while. Her arms and legs become significantly larger. Her body is starting to fill up with fluid. I suspect that she has congestive heart failure.

~

Let’s play a game! What will really kill Grandma?

  1. Failure of her kidneys
  2. Infection in her stomach
  3. A heart attack
  4. Blood clots
  5. The guilt of what she has done to her family
  6. All of the above
  7. None of the above

I take advantage of the quiet time and work on my research paper about my recent trip to South Africa. In a couple hours time, my grandma’s best friend Joanie, whom she had a falling out with many years ago, comes to visit her. We finally had convinced my mom to go to Grandma’s house for a couple of hours and take a shower, get something to eat, pay Grandma’s bills, so it’s just me, Auntie Neesie and Joan. We talk for a couple hours about lots of things as Joan waits to see my mom. It is my aunt’s birthday and we talk about old memories Joan had of my grandma’s parents when she stayed at their house. She and Grandma took their state nursing exams together. At a few points, we even acknowledge how Grandma has been very preoccupied with staying clean and getting her hair brushed.

My mom finally arrives and they have a brief visit. The nurse comes in to check on Grandma, and we have a conversation about how bad my allergies are. My grandma suddenly wakes up and yells exasperated, “Can you all please be quiet, I’m trying to die over here!” I chuckle.

My mom comes in and has a brief visit with Joan followed by even more doctors. My grandma tells them, “I can hear every conversation they’re having over there. I’m trying to die over here, but I keep trying to listen to what they’re saying. I heard them talk about my hair at one point. And Jessie.” She looks at me. “My dear, you were the loudest one.”  

“Grandma, that’s because I was sitting closest to you. We thought you were asleep.”  

“No, I can hear every word. You were talking about my parents.” Looking at the nurse, she complains, “I just want some peace and quiet here so I can die. Can I just have that when I get to hospice?”

“Yes, Mom,” my mom interjects. “You can have that.”  

~

Who has the power of attorney?

A hospice nurse named Something Or Other had been waiting for my mom to return because she has the power of attorney over my grandma. Once she got back, Auntie Neesie, Mom and I went to talk to the nurse about hospice care for the second time. She asked us what led Grandma to this position, so Mom explained the last 15 years of my grandma’s life, even though the nurse was only looking for a few sentences. When my mother finished, the nurse started to explain the various forms she had to sign.

This form simply says that we have told you about hospice care. *Sign*. This form explains that you should never receive a bill from Medicare in the mail as long as she stays with us. *Sign*.  This is the HIPAA form that says we will protect your mother’s privacy. *Sign*. Sign, sign, sign.

 

Ah, the logistics of dying.

~

When we’re done with the bullshit forms and go back to Grandma, Auntie Neesie exits the room, leaving my mom and me alone with Grandma. She begins to tell us what she wants when she dies, and I take notes on my mom’s iPhone:

Light orchid top and grey sweats. 2 black ballerina shoes. Blue and orchid eyeshadow with mascara and 702 peach lipstick. White pearl studs in piano. Medal Mom bought for her. Light blue inside casket. Statue things on corners. Wake at skaja. Food at Eagle.

“Transfer $20,000 from my money market to my checking for the funeral,” Grandma says. “Don’t spend more than $25,000 on my funeral. The rest is your money. Take care of your debt first then pay for Jessie’s college. Only give Lenny and Denise something after you’ve sold the house. Do not tell them how much you have, and do NOT let them into the house after I die. Everything is yours, not theirs, and I don’t want them to barge in claiming things.”

~

A few of my family members and I go to get some dinner upstairs. We exit the Cardiac ICU, turn right and head for the A elevators. We ride up to the tenth floor, where the cafeteria is. We all go our separate ways. I get one of their warm, fresh-out-of-the-oven cookies that I’ve had at every meal prior. We decide to sit outside the cafeteria at a table. We discuss normal things, laugh and eye each other wondering what is normal anymore?  

Sometimes, death leads to family togetherness you didn’t have before. Tragic events you’re all forced to go through together seem a little better when it is all of us losing our minds.

When we return, Grandma is unresponsive and ready to die. Saying bye is the hardest thing when you don’t know if someone will be there in the morning. It’s crazy how much you still cry.  

When you don’t think you can cry anymore and yet your eyes are still stained oceans.

Day 3

My mom and I enter the hospital room unsure of what to expect. Grandma is lying in bed like usual, but she looks bright. There’s a light to her eyes, and she greets us when we come in. I glance over at my mom, who has a look of pure shock on her face. She stares at Grandma like she is Jesus come back to life or maybe a zombie.

“Mom, you’re up talking and drinking. I don’t know what to expect. Are you really dying?”

“Yes honey, I’m dying! I just want something to drink.”

“You know if you drink that you’ll keep holding on. And you look so much better than yesterday, are you sure you wanna die? I already talked to the doctors yesterday and said you, for sure, wanna die, so there is no going back now. But here you are talking and jabbering, I’m confused. The doctors are gonna look at you alive and think, Oh, she doesn’t need to be in hospice. And then you’ll have to go somewhere else. You wanna die here, right?”

“Yes, of course.”

“Then you need to start acting like you’re actually dying.”

“How am I supposed to act? Should I stop talking or talk in a really low, gravelly voice? Can I not talk and drink?”

“Well you know your son is coming soon, and he is going to be just as confused as I am. I’m glad you’re alive and everything, Ma, but if you wanna die, you gotta start playing the part.” My mom half-laughs.

“How dead should I act when Lenny comes? I can play the role of the dying mother. Son, you disappoint me,” she says, low and breathy. “Don’t disobey your mother. Come sit by me.”

At this point, my mom and I lose it, cracking up. In fact, she’s pretty hysterical for the rest of the morning, and we both can’t help but laugh.

There is a humor in death that I can’t explain. When someone knows they are going to die, they can crack jokes about it and for some reason you can laugh with them.

~

Despite the fun morning, it is actually Mom and I who look like the dead ones. Our skin is pale, our eyes are bloodshot and we both have given up on doing much for our appearance besides putting on clean clothes.

How is she more alive than both of us?

At this point, some nurses come in to change her bandages, and the whole family is in the waiting room outside Grandma’s room. My mom and I leave to join them.

My freaked out Uncle Lenny is mumbling to himself. “Howisshetalking, sheshouldn’tbetalkingright, Ithoughtshe’dbedeadbynow, Ithoughthospicesaidshe’donlylastacoupledays.”  

“Does anyone else think that she might be secretly enjoying having us all here everyday, and that’s why she won’t die?” asks Auntie Neesie. We all nod in silent agreement. It is definitely something my grandma would do to keep us here.

We start to talk about Grandma as a person. There’s some conversation about Grandma as self-centered, even in death only caring about her appearance. I chime in with a story about how when I hit my head hard on her chandelier as a kid. The first thing she asked was if the chandelier was ok.

Immediately after, my aunt jumps in. “But you didn’t really know her.”

I freeze. I expected this kind of response at some point, but not as blatant and out there as it is now. My aunt is clearly referring to the years that my grandma was an alcoholic who beat the shit out of her children, but little does she know how I am also quite familiar with abuse.

“I remember when Mom was a mean and nasty person,”  Uncle Marty, my aunt’s husband, adds. “I still remember the day of your dad’s funeral when she was babysitting Marty. We were all sitting around the table, eating dinner after the funeral, when your mom calls and says, ‘Come pick up this fucking kid.’ I have never been more mad at her than I was at that moment when I had to race over, leave the funeral and go pick up Marty.”

I don’t know how to react. I text some of my friends for comfort. Those few words from Auntie Neesie have me reeling. I just want to stand up and shout, “You don’t know how I’ve also been through years of abuse, so don’t just assume that I haven’t! You don’t know a thing! And that’s because I never told any of you…”

My best friend, Jay, texts me back:

I think that you know your grandma’s legacy better than anyone.

I let that sit. in. my. head.  

~

Dr. Propst stops by the room and asks if my mom and aunt would like to chat. Mom asks me to stay there and keep Grandma company. They are gone for almost an hour. Grandma, meanwhile, is talking my ear off, telling me old stories and asking me some questions about my recent trip to South Africa. I am so thoroughly exhausted that my eyes can’t focus anymore.

When you’re so emotionally and physically exhausted that you just stumble through moments and doorways…

She keeps talking to me, and I’m barely giving answers, a mumbled yes, a half-hearted mhm. At this point, only one thought keeps going through my head:

She is the cause of everything bad that has happened in my life. She is the reason.

~

When my mom and aunt finally return, I’m so exhausted, emotionally and physically, that I crash and end up sleeping in the reclining chair for an hour.  After I wake up, I feel better, and I can actually face Grandma. We all talk for hours late into the afternoon, and my grandma really wants her hair washed. I’m still tired, but I’m in a better mood. I watch my mom massage Grandma’s head through her shampoo cap. Unfortunately though, my grandma, who frequents the beauty parlor, has so much hairspray in that the shampoo cap makes her hair all sticky. My mom decides to take a different approach, putting a washing basin behind my Grandma’s neck and pouring water over her head. I help Mom hold the washing basin in place.

Sometimes you find a humanity in death that you couldn’t find in life.

As I help wash my grandma’s hair, I get a good look at her face—the thin blood vessels beneath the surface, the few freckles, the age spots, the inconsistency in coloring. When someone grabs on to you, depends on you, puts their weight on you, something changes. Even though they may not have been a good person in life, you see that in the end, all they were was a person. And sometimes a weak one at that.

I’m actually starting to like her…

Day 4

It’s a quiet day in room 1451, but my sister and brother-in-law have finally returned from Nashville and are going to stop by. I bring the gifts I bought for them in South Africa. I am really excited to give them their gifts when they arrive. I put a lot of thought into each one. We are sitting around Grandma’s bed chatting while I keep trying to shoo my sister and brother-in-law out the door so I can give them their presents.

“Jessie, doesn’t Christina look different today?” Mom says out of nowhere.

I take a good look at my sister. She is 31 years old, 10 years my senior, with freckles covering her face and bulging blue eyes. Many people say she looks like Emma Stone, the famous actress, but with darker, reddish-brown hair, always worn with a bow. I stare at her for a minute before blurting, “Well, she has a stupid bow in her hair like she does everyday.”  

“No, look,” my mom goes on. I turn to my sister again as she pulls back her jacket revealing a sparkly tank top that reads ‘DUE IN FEBRUARY.’

I immediately jump up, waving my arms in the air. “Oh my god, you’re pregnant?! I’m gonna be an aunt! I can’t believe I’m gonna be an aunt!” The excitement dies down. “Wait, why didn’t you take me outside of the room to tell me instead of telling me next to my dying grandmother?”  

“Well, your Mom kind of started it.”  

“Well fine then, I’m going to give you your gifts in the room too then since you told me I was going to be an aunt in a hospital room.”  We both laugh at each other, and I turn around to grab the gifts. My sister opens up a hand-carved wooden penguin and my brother-in-law pulls out a wooden key chain. They thank me for the gifts and then have to leave because Joe needs to get back to work.  

While walking them out, my sister asks, “How are you doing?”

“I just want her to DIE.”  She casts me a horrified look while I try and justify my outburst. “You have no idea how hard it is to watch someone die day after day.” I promptly exit the elevator at my floor.

~

Later that night, it is just Grandma, Mom and me like usual. I am on and off the computer doing things, completing crossword puzzles in People, but I stop when I notice that my grandmother’s breathing is becoming more irregular. I watch her chest, rise, fall, stop. Forty-five seconds later: rise, fall, stop. The gaps in her breathing keep getting longer and more inconsistent. Every time she stops breathing, I look over from my computer screen and have a silent heart attack.

I feel like I’m having more heart attacks than she is.

Day 5

The stench of death.  

Day 6

How the FUCK is she still alive?

My mom and I talk to a nice nurse named Nancy for a while. She’s our favorite. As she changes the morphine drip and sodium chloride IV, we ask, “Is this normal for her to still be alive considering the condition she is in? Shouldn’t she at least be getting an infection sometime soon since she stopped the wound care?”  

“I think we are all surprised that Carole has stayed with us this long, but your mom knows that if she wants to die she has to stop drinking. If she keeps drinking, you’d be surprised how long they can hang on.”

Day 7

I’m finally taking a break from the hospital. At this point, I have no idea when Grandma is going to die, and I deserve a mental health break. I decide to focus on my future and start to look up non-profits in Seattle that I might want to work for. It’s so much fun imagining a future far away from this. I also intermittently catch up on Pretty Little Liars. I missed FIVE whole episodes while I was in South Africa. Obviously, a priority.

My mind wandering, I decide to look up the term domestic violence, as I’ve always associated myself with it,  but I’m unsure if it specifically applies. The term covers intimate partner violence only, so I Google “abuse from brother.” This leads me to a Wikipedia page titled “Sibling Abuse.” I’ve never heard of the term before, but I click on it because maybe it’s a better term to describe what has happened to me.

I’ve never seen something that so perfectly captures my life.

Craving further information, I click on a source titled “High Risk Behavior Among Victims of Sibling Violence.” My heart begins to race as I read further. “Despite the fact that sibling abuse has been documented as the most common form of intrafamilial abuse, it has been largely overlooked from an academic, research perspective, as well as from a social and legal standpoint…Excluding sibling abuse as a serious form of family violence ignores and trivializes this phenomenon.”

Yes. Fuck yes. This is my life.

“Sibling violence has been widely connected to other forms of family violence…The occurrence of sibling violence is highest in families in which both intimate partner violence and child abuse are present. Negative sibling interactions occur at four times the rate of positive sibling interactions in families characterized by abuse and neglect … Hoffman et al. (2005) found that witnessing arguments between parents increased levels of sibling violence.”

This explains my entire life. My brother beat me because he witnessed arguments, because he was abused by Mom.

I try to think back to when the abuse from my brother started. I think about when he was a sophomore in high school and choked me because I accidentally thought his t-shirt was mine…Was my mom emotionally abusive to him at this point?  I think so.  He definitely witnessed arguments, that’s for sure.

“…patriarchal arrangement of families, ideals of masculinity, and a cultural acceptance of the use of force to gain control over others or to resolve conflict all create and foster a social environment for… forms of family violence…”

He choked me to gain control. Behind every move, there was my mother. He was trying to gain control of his life. Of me.

“Taking the idea that power differentials manifest family violence, this theory reasons that younger children who, in comparison to older children, lack the advantage of physical strength, responsibility (i.e., power), and knowledge and female siblings who are also less likely to possess greater physical strength and power have a greater likelihood of sibling victimization compared to older and male siblings.”

Well, great. Sociology has explained my life in 5 pages. I am so fucked.

I stop. I can’t read anymore. It’s all becoming too real, and I can see all the connections now. How did I not see them before? My brother abused me because of my MOTHER, my mom. And we all know that my mom is emotionally abusive because of my grandma, so this all stems back to my grandma, my grandma. How could she cause three generations of pain? How am I supposed to see her tomorrow? Do I ask her to apologize to my mom, aunt and uncle for all the abuse she did to them? Do I ask her to apologize to me? Would she? Do I explain to her that her actions 40 years ago have literally ruined my life today? That because of her, everything in my life has been shit. How am I supposed to see her humanity now when she’s caused EVERYTHING in my life to go wrong? Do I still see her humanity? Should I?

“Students who have experienced child maltreatment have 300.5% greater odds of experiencing abuse by a sibling compared to students who have not experienced child maltreatment…”

Did I even have a chance?

Day 8

I can’t face her today after knowing all she has done. I just can’t face her. I refuse to.

Day 9

I finally go back to the hospital and surprisingly feel nothing. I think it’s because I’m holding back all of my emotions. I still see her as the pitiful dying woman she currently is.

Days 14-16

Grandma has become completely unresponsive. Only gurgling sounds from her neck emerge.

Day 17: The Last Day

I send a text to my friends:

We are at the death rattle.

~

“Mom, you can go. We are all here saying goodbye.”

“Everything will be just fine, Mom. You can go.”

“Mom, you can go.”

The End

Grandma dies on a Friday evening surrounded by her daughter, son and son-in-law. My parents finally drive home from Shepherd General Hospital for the last time.

It is over.

If you have a story to share, email us at thespark@macalester.edu.

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