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.