Dying in the Living Room

Notes Compiled December 23, 2010-January 10, 2011 

Four years went by while my mom was lying in the bed by the window in room 430 at St Peter Villa here in Memphis. For three years before that she was in a Geri-chair or slumped over in a wheelchair: confused, frightened, verbally rambling and/or tearful. I visited her every day, did her laundry, brushed her hair, kept her hair trimmed, fed her dinner, sang songs to her, made up funny stories just to make her laugh and developed trust with all the nursing staff and administrators in the place. I did what I could to protect and nurture her for seven years when she could no longer protect and nurture herself. Could I have done more? Certainly I could have. Did I do the best that I could? I did. My mother said (while she could still speak) in her last years, “I am so glad God gave me a daughter; otherwise I would be all alone.”

She tried to stop eating three times. It was her only power; she could choose not to eat and nurture what was left of this physical body. She could still choose not to open her mouth and accept nourishment for the life she had fallen into, a life in which she was robbed of her capacity for conversation, reading, gardening, writing poetry, teaching, taking walks in the woods, playing word games and playing the piano. She stared at the ceiling blankly. The nursing home staff insists on putting food in the mouths of residents. It is what they do. Mom has been too weak to persist in her fragile attempts to escape. I went to her room and found pureed meatloaf up her nostrils, peaches in her ear, mashed green peas in the crevice on her skinny neck. It was disgusting. The staff feels proud because they feed people. There is no analysis of life's quality here. She is simply not dead yet. 

On December 23, 2010 the evening nursing assistant told me, "Your mama is choking bad on her food again and she's forgetting how to suck through a straw. I don't know what we gonna do." Something inside of me clicked into place. I had had enough and I knew that Mom had had more than enough. She stared blankly at the ceiling as I brushed her hair. I turned off the steady assault of high-volume TV. "I am going to rescue you, Mom," I promised. 

I brought Mom to our house on Tuesday afternoon, December 28. My partner, Anna Neal, and I chose to devote ourselves to liberating Mom from the institution and from the life that no longer knew her as a creative, intelligent, humorous, powerful woman. My daughter, Jennifer Brewer, helped us set up safe space in the middle of our home, right in the living room where we watch television, entertain guests, read books, listen to music, play the piano and eat our meals. We put Mom in the center of our lives. The medical equipment man brought a hospital bed. Two paramedics delivered Mom at 3:30 in the afternoon. She started smiling when she was settled on the bed. She looked around the room with peace, curiosity and appreciation. The paramedics and hospice people (nurse, chaplain, social worker) were moved to tears as we all were. She was glad to be in a protected environment. It might not be her own home back on Jefferson Street in Dayton, Ohio. It might not be a Nazarene parsonage where she had lived with each of her two Nazarene husbands. But it was a place where she could feel absolutely special and loved. It was the best I had to offer.

As we kept the vigil beside Mom's bed for thirteen days, Mom's decline was surrounded by love. Rev. Brooks Ramsey came by with hat in hand. (He is the most life-affirming person I have ever met.) Rev. Cheryl Cornish and her husband, Mark Allen, stopped by to pass the time with us. Rev. Randall Mullins and his wife, Sharon Pavelda, sat and shared stories. Friends brought food and flowers day after day: Nancy Weirs and Laura Harris with Ari, Steve Horton and Bess Robinson, Patty Crawford and Nan Lemons, Susan Adams, Marsha Walton, Jeannie Mandelker. Neighbors stopped by just to check on us, invite us to come outside for a breath of fresh air. I posted entries on my Face Book page and found the supportive comments of my friends to be encouraging. The online connection kept us from feeling isolated in our exhausting and rewarding work. I have saved and am sharing those inspired posts below:

December 28, 2010:

We are listening to violin and piano: Love Songs. Josef Suk interpreting the best known works of his grandfather and great-grandfather. It is soothing for Mom and me.

December 29, 2010:

I highly recommend restorative yoga.  I attended a class at Evergreen Yoga this evening and it is like excellent medicine for the spirit, mind and body.

December 29, 2010:

Even though Mom weighs only 76 pounds, it still takes two to turn her properly. The nursing assistants can do it by themselves. We're not that experienced at this work. Turning her every two hours during the day and getting up at 3 am for a night-time turn.

December 30, 2010:

Anna plays old fashioned hymns on the piano for Mom's listening pleasure. Music turns on a flow of tears for all of us. I am lying in the bed beside Mom and singing old hymns.

December 31, 2010:

Friends are always a gift. And when it comes to experiences of illness, birth, relocation, divorce and death: friends are survival tools. I am grateful.

December 31, 2010:

The hospice nursing assistant came today and gave Mom a bath and changed the bed. We appreciate the good help.

January 1, 2011:

Prayer shawl on Mom's shoulders and Brahms sonatas in the air. A tender morning around here.

January 1, 2011:

Just like the old days-- friends have dropped by to visit, share stories and pass the time by Mom's bed. I am cheered.

January 1, 2011:

Jennifer made pot roast for us. Yum!

January 2, 2011:

To care for the body of the woman who gave birth to me-- even as she transitions into a new life--is a gift too deep for words. We are both listening to the cello of Yo-yo Ma.

January 3, 2011:

Like Jacob-- I have wrestled all night with the angel, walked away with a limp and I have received the blessing of my mother.

January 3, 2011:

Anna was playing hymns on the piano and mom tried valiantly to sing, "Sweet Hour of Prayer." It was merely a squeak but an amazing squeak for sure. A river of tears flows with the music and connects us forever—here and there, now and then.

January 3, 2011:

This is what I notice: Life is breath. And letting go of that is a process. I sit beside Mom and watch. Each inspiration and exhalation is a miraculous exchange of giving and receiving. The final breath my mother exhales will open the door on new life. Breath is the key.

I am learning so much by being here. Thank God for the courage to be here beside her.

January 3, 2011:

I am so grateful for Leslie Baker at Aseracare Hospice, my place of employment. Fear tried to consume me. Leslie graciously answered my questions and provided warm support. I am better off now. Mom is peacefully snoring. Anna is cooking. All's well with the world.

January 4, 2011:

An observation: This being with my mom as she transitions is the most challenging experience I have ever had. Nothing comes close by comparison. Merely an observation I made at 5:45 by her bed this morning.

January 4, 2011:

A wonderful hospice nurse just came for a visit. She checked Mom out, answered our questions, reassured me and brought more medicine for Mom. Drugs (morphine and Ativan) are mighty good things when it comes to the dying process.

January 5, 2011:

While death wags a bony finger from the shadows, inviting me to be scared-- I brush Mom's hair, adjust her shawl, light a candle, lie in the bed up close to her and recite memorized scriptures and prayers. I want to see her face when she looks into the eyes of God. I will not allow death to control the last hours of our love.

January 5, 2011:

Jennifer is spending the night with us tonight. She is on the couch.

January 6, 2011:

Today is Epiphany. As the sun began to rise, Anna heard the Barred Owl barking in a tree out back. (They really do bark.) She called Jennifer and me to the kitchen door. As all three of us stood in the dawn, two barred owls, magnificent creatures, flew over our heads and up into the great oak next door. I believe they have come to carry Mom's spirit all the way home. They are waiting patiently for her to complete her process. We stand together in the dark and pray for patience.

January 6, 2011:

Wish I had a key to open the door to absolute trust.

January 7, 2011:

I stood in the early morning stillness and listened to the sounds of breathing. My mother sleeping in her hospital bed and my daughter sleeping on the couch: the one who came before me and the one who has come after me. Every breath belongs to God.

January 7, 2011:

My cousin, Nancy, called from Florida. She's flying here to visit us next weekend. Hurray!! Family coming in person!!

January 8, 2011:

My mother is still teaching, facilitating a Ph.D. level course for Anna, Jennifer and me in this vigil. I am learning to live with the reality of dying.

January 8, 2011:

Being a nurse is not all that helpful in this end-of-life challenge with my mom. What I know professionally is almost totally overshadowed by what I feel as her child. I have to ask for information over and over. Mostly I am asking: Are we doing this right? Is she pain free?

January 9, 2011:

My mom has gone home. She chose to worship in heaven today.

January 10, 2011:

Two men dressed in black came to carry my mother's body away. They are strangers. But the One who carried my mother's spirit away is as close and intimate a friend as I will ever have. She is safe, no longer suffering. She is rescued and set free. Thank God!