Monday, July 27, 2009

Saying Goodbye

I came down to Florida expecting to escort my mother up and down the aisles of Wal-Mart. I figured we eat a lot of broccoli cheese soup from Chili's and her favorite shrimp scampi dish from Olive Garden. I planned to go over her handwritten memoirs with her. I made a special photo album of her life.

Instead, I've been sitting by her bedside watching her die.

My sisters and I agree: Over the past week, we've all done things we didn't think we had the strength or courage to do. We've given my mother physical care we couldn't imagine. We've prayed and sung and held each other while we cried.

Fortunately, we haven't been alone. Mom "activated" hospice. And these wonderful people have been our guides and mentors.

Hospice comes from the same root word as "hospitality." It means "a place for weary travelers to rest." Unlike aggressive hospital therapy, it takes its lead from the patient. Instead of setting the agenda, it takes its pacing from the patient's needs, not the hospital schedule. It cannot cure, but it can palliate. It cannot heal a dying body, but it can provide ease of pain, peace, and solace for the sufferer. And most of all, support for the caregivers/family.

Most people wait too long to activate hospice. They call when a person takes his/her last gasps. But when my grandmother died, her doctor refused to activate hospice, and I was left trying to make good decisions without good information. I couldn't get Grandma to eat. She and I went 'round and 'round about it. I was frantic. I felt like I was failing her. In desperation, I phoned the local hospice, explained my circumstance, and started sobbing. The kind woman listened to me, calmed me, and explained, "This is a natural part of the process. She doesn't need food now. It's all right. "

"But aren't I killing her?"

"No...the disease is killing her. This is a natural, human reaction to that disease. Her body is shutting down. It's okay."

On Saturday, Sally Lippert, a friend of our family and a hospice nurse from VITAS came to assess my mother. Mom couldn't tell her what year it was. Nor could she name her grandchildren even as they stood in front of her. She had lost her fine motor skills, a sign the cancer was in her brain. She'd also lost the ability to walk without lurching from one piece of furniture to the next, and her legs ached terribly. That was a sign the cancer had metastasized to her bones.

Sally asked Mom, "Do you know why I'm here?"

My mother, a very proper Southern belle, said, "Yeah, I know... It sucks."

Talking with Sally in private, Mom could finally set aside her denial. She didn't give in--no, not hardly--but she did allow us to step in and care for her. I arrived the next morning, and Mom was already in and out of a coma. She's been in and out of it since. With the help of Sally and our assigned hospice nurse, we care for Mom. My sisters and I sit with her, clean her, and give her medicine. We do what Sally calls "a life review," starring Mom!

One night, we sang all the songs she taught us as children. Another we told funny stories. We continue to tell Mom how much we love her. And lately we've told her, "It's all right to let go."

Because it's time.


Camille Minichino said...

Joanna, my thoughts are with you.

Strangely, I spent the afternoon at a memorial service for the first person I met when I came to California -- a wonderful woman, a wonderful tribute to her 90 years of life.

There's no question that moments like these make us stop short, put everything in perspective, and reflect.

You and your family seem to be on the road to gaining much from these last moments with your mom. You're lucky to have each other, and I wish you the very best kind of peace.

Sheila Connolly said...

I'm so sorry--I know how difficult it can be. When my mother was in the last stages of lung cancer, she told her doctor, "I don't want to feel anything." He gave her morphine, enough to keep her out of pain--and out of consciousness. We her family members all agreed with her choice, and let her go with some measure of dignity and control.

Deb Baker said...

After a fall and brain surgery my father slipped into a coma for several days before he died. I'm convinced he knew we were with him. Keep singing your songs.

Monica Ferris said...

They say hearing is the last to go. Keep singing, keep telling her you love you, and yes, tell her it's all right to let go.

Thank God for Hospice.

Julie said...

You know everyone is sending you hugs. Hospice is a blessing.

Allison said...

Joanna, my thoughts and prayers are with you. I've been through the same with with my dad, and while it hurts, you will always treasure these last hours with her. I'm praying for you and your family.

Linda O. Johnston said...

Joanna, so sorry to hear of the pain you are going through. Hugs, and please be sure to take care of yourself in this difficult time.

Joanna Campbell Slan said...

Thank you all for your friendship, support and comfort. My mother died last night a couple of hours after I finished my post.

Unfortunately, the morphine didn't completely alleviate her pain. The theory is that the chemo she'd had somehow kept her body from absorbing it.

However, she was for the most part comfortable and mainly unconscious. And yes, we kept singing, laughing, remembering, and telling stories. Alternately, we held her, stroked her hair, and cried over her.

When she passed, the overhead lights in the room began to blink frantically. There was no storm, no other outage in the area, just an almost strobe-like on-off. Sally looked up and said, "It's okay. We got it."

I am thankful for all she gave me--a sense of curiosity, years of ballet, a love of history, a desire to travel, a grounding in religion, a connection to my heritage, and most of all, my sisters. But I am also very clear that she is better off now. The undertakers wheeled away an empty shell, a spent cocoon, a discarded remanent (sp?) which bore very little similarity to the feisty, vital woman I knew.

I will miss her, but I would NEVER wish her to linger longer that sad physical condition.

Maggie B said...

Wishing you the peace and strength to help your Mother make this journey. This past May, hospice helped me to help my Grandfather pass. Please remember to take care of yourself during this very difficult time.