Day 1: I am on my way to improv I call mom, as I do everyday but dad picks up. Not to worry, he says, but mom is in the hospital. She has been in and out of the hospital over the last few years. She has several autoimmune diseases, including Sjogren’s and has had some serious complications with her Irritable Bowel as well as several bouts of pneumonia. “Her cough just isn’t clearing up.” Dad says. “Wait, why are you home?” I ask.”You know mom, she doesn’t want any fuss. Don’t worry.”

When I arrive, she is in a curtained emergency cell. She looks like shit. “I told you not to come, Rebecca.” She is agitated. “Mom, I’m worried.”  She softens a little and we chat as nurses bustle in and out. One nurse is especially friendly and I ask what kind of tests they are running. “Oh we just want to see what’s going on in those lungs. COPD can complicate things.” COPD? I look at my mom. ” I don’t have emphysema.” She is defensive and ashamed.

I reluctantly go to improv class while mom had several scans. Alone.

I call Bob and tell him to come.

Day 2: Mom comes home on the evening. They want her to take it easy until the oncologist can check the scans. Marcus, the girls, and I come over to make dinner. The hospital delivers her oxygen. We talk briefly about the likelihood of cancer. While Marcus and the girls are in the kitchen with dad, I help mom get set up in the TV room. As I tuck her in the couch she asks, “What will happen to Ken?”

“We will take care of you, and then we will take care of him.” My mom is a proud woman so it feels strange to see her so vulnerable. She is so, so tired. We hold hands. “I do everything for him.” She is winded, “I set out his pills, I tell him when to wash, I pay all the bills.” I am beginning to panic for the first time that maybe she is actually very sick. “It’s too early to worry about these things mom. We don’t even know the results. Even if it is cancer, we still have time.”

Days 3 and 4: Mom continues to weaken at a terrifyingly rapid pace. Dad starts calling to give hourly updates. He is beside himself by how sick she seems. She can no longer walk to the bathroom and he has to buy her diapers. They are now convinced it must be cancer and are speculating what kind, what extent, how long. We wonder why she is going down hill so fast. Should we take her to back to the hospital? It must be the pneumonia and she is on antibiotics, so we decide to wait.

One of the nights, I come over and we talk about the very real reality of what is happening. She makes me promise that I will by a house that will accommodate dad or that we would help find him a place. “You can’t survive on your own,” she tells dad. Later, when we are alone she cries, “I think he has dementia. What will he do without me?”

“What will I do without YOU?”

Day 4: Bob comes. Bob is the oldest. He is the best. He is the smartest. I am  relieved because Bob can get things done. Somehow I am lulled into thinking that he can do something tangible to make this nightmare go away.

That night, he takes dad to dinner to try to really talk through what the next steps might be since it is clear mom is getting worse very fast and whatever the prognosis is, we can all see she is dying. I  come over and babysit mom while they are out.  I stand in the living room after they leave. The house is in shambles. Mom would never, ever allow such a mess. I try tidying up a bit. “Rebecca! Is that you?” She calls as I bang around the kitchen.  She is on the couch in the TV room. Lying on the couch with the oxygen tube in her nose, covered in blankets, she looks so tiny. “Hey mom,” I say. “I brought some movies, I thought we could watch something together and hang out.” I just want to be close to her and pretend everything is normal. But for this first time I noticed the rattling in her chest. “I’m sorry honey. I know you wanted some girl time, but I’m tired.” She falls asleep with me sitting on the edge of the couch. I look at her for a long time. Breathing in. Breathing out. I drink her in. I look at the pictures in the china cabinet. I trace the veins in her hands. And then quietly leave.

I never saw my mom in her house again.

Day 5: I tell Bob that I don’t want to know the results of the visit with the oncologist while I am at work, but I can’t wait and I call over lunch. “Are you sure?” He asks. He doesn’t need to say anymore. “It’s everywhere. In her brain, in her bowels, in her bones. The scan lit up like a Christmas tree.” After work, I rush to the hospital. She is admitted until she is strong enough for in home hospice. I walk in and she opens her arms and says,

“I’m so sorry.”

Day 6: Fi refuses to go to school and stays by mom’s side for hours at a time. We take turns cuddling in bed with her. Strangely, she wants photos taken. I humor her and she is satisfied. She says, “It’s the first time since middle school, I’ve looked so thin.”

 

Day 7: Its getting brutal. Mom is in a lot of pain. She can not eat or get out of bed. She  slips into altered states. When she is alert, she makes us promise we won’t talk about her in the third person. Eric arrives. We want Matt to come so she can see all the children together.

Dad cannot  be at the hospital for long. Mom gets agitated when she sees him. “Where have you been?!” She demands. He cries. He hyperventilates. Bob, Eric, and I take shifts. Someone is always with a parent. First Bob and me, then Eric, then Bob, then me again. I am at the hospital 10 to 12 hours a day.

Day 8: The oncologist informs us that mom will not be able to go home. She is too weak for any treatments. We begin looking for a hospice house. Mom is less and less lucid. But she retains some of her humor. When she asks us how soon she will die, we tell her “soon” and she holds up both hands, closes her eyes, and crosses her fingers in an attempt to lighten our mood. Later, as she holds Bob’s hand she says over and over almost as a kind of futile, questioning, mantra, “Why am I such a bitch? Why am I SUCH a bitch, Why am I such a BITCH?…..”

But she spends more and more of her time groaning. Bob spends more time with dad trying to make arrangements. Eric helps dad around the house, doing laundry and fixing things, making sure he eats. I spend hours and hours at the hospital. Time stops. A harpist comes and plays Mom stares out the window and cries. “When will I die?” she asks. “I don’t know mom,” I say. “Soon, I think.” “I’m not ready now. Maybe in 15 minutes.”

Day 9: Though we tried to find a hospice for mom, it has become clear she is too weak to move. We are told she now has only days, maybe a week, and will have to die in the hospital. I am a ghost. I have spent so many hours at the hospital I cannot think, I have lost my car in the parking garage every single time I leave and  wander for 30 minutes looking for it.

She is showing active signs of dying. She picks at her blankets, and the rattling in her chest is worse. She groans and sighs or cries out even when she was asleep. Some lovely ladies have brought mom a quilt. It has lab dogs on it. Ironically, she has started seeing a black lab by the door waiting for her. I tell her it is her beloved dog, Jenny, waiting for her.

At some point during the day mom wakes from her deep sleep and exclaims, “I don’t know how to do it, how do I do it?” I stroke her head and and whisper her back to sleep, “You are doing it, mom. This is exactly how to do it.”

She is in too much pain. The fluids are making her urinate and she gets upset and confused when she has to go. She doesn’t want to go in her diaper and holds it in. I lie and tell her she has a pan. “Mom you are on the toilet, you can go.” but she still struggles.  Dad is not here. There is no one but me. I walk down the long hall to a nurse I trust. “Will she stop being in pain?”

I make the decision to withhold fluids. I stand and watch as the nurses unhook the tubes and IV’s. When they leave, she looks so vulnerable, all alone on the bed in a hospital. I feel so guilty, but I remember what she has asked, so I decide to tell her. “Mom. We have stopped fluids. It will make you feel better, but it will speed up the process. Okay? Mom?” She looks at me confused.

“Oh. I don’t think I’m ready for that.”

Day 10: She continues to decline. She sleeps. We take turns. Matt has decided not to come and says goodbye to her on the phone. Her sister, Cinda comes. Marcus brings S. for a few minutes. I know she won’t remember, but I want her to see her Oma one more time. She gives her a kiss.

The night is an incredible. During my late night shift, M. comes to be with us. Mom has been goofy about a nature video loop on TV that has been playing 24 hours a day since she checked in and we were laughing about how she keeps saying, “Isn’t that pretty.” She laughs too and then declares: “I’m hungry!” We order tapioca and a Pepsi. She eats with relish and when she takes a drink of the Pepsi she grabs my arm, closes her eyes in bliss and says, “What is this concoction!?” As a lifelong Pepsiholic, we can’t help but laugh at the irony that her last drink was a Pepsi on ice. It is perfection.

This is the last night my mom is awake and aware.

Day 11: Time goes by slowly now. I am thinking about minute details. I go to get a prescription and the pharmacist asks if the pills are for Debbie or Rebecca Rothery. I break down crying in the pharmacy. I drive to and from home to see the girls or make dinner or sleep and I cry in the car. On the way to the hospital I pick up the phone and without thinking I dial mom’s number. She is the one I call when I am sad. It rings several times before I realize her phone is in the bag on the counter in the hospital room. She won’t answer again.

Eric and Bob are taking care of funeral arrangements. They are helping dad find a plot and a mortuary and also how to donate mom’s brain to the Tourettes Society. I spend the day lying on the window bench and watching the clouds. At a certain point, I cannot stand the rattle any longer. Her breathing is so labored. I call dad and ask if he thinks we should stop the oxygen. He doesn’t know. He says he will call back so I wait in the room with mom. “Mom, I am thinking we should stop the oxygen,” I say. “I think it’s time for you to go. It’s been 15 minutes now.” Dad calls back, “Tell the nurses to stop the air.” They come in and unhook her. Now she is on the bed without any machines at all. Her breathing slows. Throughout the day, one of her leg keeps dangling over the side of the bed. It is frozen and I want to tuck it in, but she just shoots it back out the second I try it.

This is the night I tell her to go ahead and die. I’m worried she is holding on for something. It’s self centered to think that maybe she doesn’t want to die on my birthday even though she doesn’t know it’s my birthday tomorrow. Late that night I encourage her to go. I sing her some songs from shows I’ve been in. I used to hate it when she would ask me to sing, but I find myself singing on and on, searching for every show tune I can. I sing “You’ve got a friend,” the James Taylor edition that she loved.

Day 12: We are waiting. And waiting. It’s quiet except for her breathing, which fills the room with a deafening rumble. Dad comes in briefly and paces a bit before telling us to call if there is a change. At 5:00 PM I go home for dinner to celebrate my birthday with Marcus and the girls. They give me the camera I have so wanted. I am changing S. on the changing table around 7:30 PM. I am getting ready to put her to bed before I go back to the hospital. Eric calls.

She died.

Why did she die without me there? Why did she wait until the one hour I was home and not there by her side?

Dad, Bob, and I rush to the hospital. Dad swoops in hugs her, weeps and rushes out to go home. He can’t stay. Eric drives him home. Bob comes in, takes one look at her and says, “Mom, you look dead” It’s true and funny in a macabre sort of way. She would have laughed. After his goodbyes, he leaves to talk to the nurses about her brain donation.

I am alone with my mom. I crawl into bed with her. She is warm and I roll her to her side and put her arms around me. I press my face into her chest. I stay there for a long time until I stop knowing what to do. I am alone. She is gone. Reality sets in and I can smell that she hasn’t had a bath. She would not like me smelling her body odors. I go to the sink and I wet a washcloth with soap. I am going to clean her up. I open her gown and wash her, slowly and with care. Her body is hers, but not hers. I remember her words, “I don’t know how to do this.” I’m not sure she would want me to see her naked, but I feel I need to touch her to understand that she is dead. She must have washed me in a similar fashion on this same day, 43 years ago. How strange and sad and wonderful. She must have been so happy to finally have a girl. She must have been just as gentle and tentative and loving as I am now. Finally, the spell is broken and I feel awkward. I cover her up. There is nothing more I can do. What else can I do?

I am alone.

She is gone.

I climb in bed and hold her one last time. I hold her and hold her and hold her and hold her.

And then I go to the door, pull the handle, and walk out motherless, for the first time in 43 years, to the day.

 

Deborah Ellen Rothery

March 23, 1941-March 12, 2013