10/15/2013 07:12 EDT | Updated 01/23/2014 06:58 EST

Camping out With Death

My mother is dying. When it got to be too much at home we put her in hospice.

Hospice, for those who are not familiar with the term, is a place where folks go to die. The criteria to enter are you have three-six months left to live with an expectation of no heroic measures. The goal is comfort and dignity in your final days.

Arriving it feels like a hotel for old people. Tasteful décor, fresh flowers everywhere, a view of a remarkable rose garden from every room. Flat screen TV's and three delicious homemade meals a day served to you in bed. Almost like a vacation. My brother and I camp out in the room with my mom. Me in the Murphy bed and him on the Lazy Boy. We fall asleep listening to her whisper to herself and hallucinate on the shadows she makes with her hands. My mom had lung cancer and it progressed to her brain, so she is not safe to be alone anymore. She could fall. She could leave and get lost. She could take all her clothes off and run the halls naked. So we move in to the tiny room with her.

I don't want to talk about the angels that turn my mother three times a day, give her sponge baths to classical music and clean the skin growing on the inside of her mouth. I don't want to talk about the volunteer staff that make 100 per cent of the nutritious food and hand deliver it like a chef at a fancy restaurant to the dying guests. I don't want to talk about the nurses who tirelessly control pain, come up with solutions for neck spasms and comfort the ever-grieving families.

I want to talk about the residents.

Tom is 60. He has some sort of degenerative disease that leaves him now in a wheelchair with little speech. He used to be a scientist and he reminds me as I twitter about in the communal dining room that synthetic scent is a toxic chemical so maybe my five-month-old wants to steer clear of the room freshener I am about to spray.

Barbara is 50 and has terminal brain cancer. She holds my baby when I get frazzled. She makes collages out of Vogue magazines to decorate her room with and she speed walks the halls to get exercise.

Hattie is our neighbor. I've only peeked in. She looks like a mouse wearing glasses under a quilt. Her entire family is packed into the room. Grandchildren. Husband. Second wives. Even my old high school bully is there. Hattie is surrounded by love whether she wants to be or not.

Very quickly it begins to feel like camp. Have you ever been to summer camp? I don't mean the fun and games and blowjobs and archery parts. I mean that we live in very close quarters and everyone assumes that everyone else is good.

The other night we thought my mom was dying again. We held vigil around her bed crying and praying. There were two men outside our room talking loudly. I did not want her last sensory experience to be hearing about the NASDAQ so I popped my head out and said in my fiercest hate whisper "take your chit chat somewhere else!"

The next morning me and the man I quiet-yelled at met at the coffee bar. He smiled sleepily. I nodded sadly. All was forgiven.

His dad is dying across the hall for where my mom is dying. We both sit outside late at night catching up on emails. We both bring their beloved dogs in to visit. We both are devastated and exhausted. We are friends who have never exchanged a word.

The saddest thing about dying is the forever part. I still have not wrapped my mind around that one. That this beautiful woman who made me who I am- will be no longer. Will be nowhere I can reach her -- soon. It makes my head crack in half with hurt.

And there is the wife outside burning through smut novels while her husband hacks a lung inside. She is giving him privacy in his discomfort.

We are all living in this house of horrible grief together. She understands when I don't raise my eyes today and he doesn't try to make conversation as I pour milk into my cereal while tears stream down my face.

And no one talks about death.

Instead we discuss the roses outside, how the weather is turning and what great lasagna we had for dinner. There is no need to talk about the inevitable. We'd rather pretend a moment of normal instead.

They say people die as they lived. If that is true I'm going to be here for a while. My mother is a stubborn force. She lived powefully and she will not die easily.

I wake up this morning and Hattie's room is empty. She left us in the night. Her room is clean and the windows are open.

My mom has been getting into folding a lot lately. The staffs here say a lot of women nearing death do that. Their hands have been busy their whole lives with folding, cooking, measuring, mending and now it is the pattern that they want to repeat. I don't like the folding. It makes me anxious. I go to press the buzzer to call the staff to bring her a sedative and she grabs it before I can. She looks at me sternly and says "No more sedation. If I want to dance in the halls naked, let me! I want to feel this experience I am having."

This is my mom folding up my son. As you can see he enjoyed himself as well.





I take my mother out into the garden. She can't walk anymore so I drag her from the wheelchair to the grass. We sing her favorite hymns. She sleeps in the afternoon sun. We stroke each other's faces and as I cry she says, "So what time's your shift over dear?"

I wake up the next morning and Barbara is gone. Barbara who held my little boy just yesterday. Barbara who snuck out and had a smoke with me behind the fence. The pictures of her kids are gone. Her big duvet is gone. Her door is wide open.

My mother is slipping further and further away. The staff calls it changing. She has not taken food or water for a week now and she does not open her eyes or respond to voices. When we cuddle her tiny body she winces so we just hold her hand and try to be still for her.

One night I leave the room and both double doors are barred shut on either side of the corridor. I'm trapped in an alcove of sorts. A care aid steps out of one of the rooms. "Please return to your room right now," she whispers intensely. I shut the door. Someone has died. Even though we all know, even though we are living death every minute of every day they are trying to maintain privacy for the dead and respect for their families.

I overhear Alf talking at breakfast. He is a curmudgeonly old bastard I have never really gotten along with. He always falls asleep with his spoon of mini-wheats suspended in mid-air right between his mouth and the bowl. "My wife is coming to get me tomorrow" he says. "I'm leaving this Goddamned place."

"Alf thinks his wife is coming to get him," I tell my brother later to keep him abreast of all the daily gossip. "Poor old guy" my brother says. "He's going to die here alone."

I'm wearing my mother's underwear. I'm using her toothbrush. We are living off the kindness of casseroles and baked goods that her church friends bring in to us. Time means nothing anymore. It's 10 a.m. and then it's 7 p.m. in the blink of an eye. I don't know what day it is. I don't know if I've been here for two weeks or a month. I go outside once a day for a walk around the block and come back in the room quickly, glad she hasn't died alone.

I fall asleep, lulled by the rattle of marbles inside her chest. I find it soothing because it means my mom is not gone yet. It could be the next breath, or the next but it's not this one. It's not yet, not quite yet.

Russ, the six foot four inch tall care aid comes in to help my mom get ready for bed. She is broken as a little bird and he treats her like his own. He caresses her arms with lotion, and puts the warm washcloth on her face, "Now doesn't that feel good Judy?" he says softly, as she moans.

I wake up the next morning with a catch in my throat. I sit up and listen... And there it is again, my mother's breath. Although I want her to go, I want her to be free from pain I am relieved I still have a mom today. I'm not ready for the grief.

This place is like summer camp. Each day is more meaningful than the last because it's bringing us closer to goodbye. We will miss each other desperately. We will carry each other in our hearts. We will be changed forever. And we know it will end.

I walk past Alf's room. It's empty. I run to the care station. "Where is Alf? What happened? I just saw him last night." I ask. "Oh, his wife came this morning to pick him up. She took him home."

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