There was a lot about that place I didn’t want to see or hear.
The buzzing and whirring of ventilators; the loud call bells; near-dead patients; nurses running around with IV pumps and tubes dangling along behind them; the heart-stopping “Code Blue” warning; or the electrical sizzle of a patient getting shocked as someone screams, “All clear!”
I didn’t want to do it.
Just a few days before, I had buried my mom.
First there was her diagnosis, then her many surgeries punctuated with seemingly endless rounds of chemotherapy and radiation. Next, the tears, the softly murmured, “I’m too young to die.” And finally, her last breath.
Mom was 61 when she was diagnosed with colon cancer, after surgical colon resection, chemo and radiation, she stayed in remission for almost two years until the cancer came back. Only this time it was metastatic cancer of the liver.
Her surgeon said, “Not curable. No surgical intervention either. The tumor is too large—the size of a grapefruit. Chemo won’t touch it either.”
Then, he said this to my mother:
“Get your house in order.”
We all know that one day, we will die.
If it’s possible, I want a peaceful death. And my mom did too. She wanted to be comfortable and pain-free, so she made sure she was DNR. The whole family agreed they’re be no ICU, no CPR, no ventilators — just peace and calm. So we took her home and to her bed where should could look out of the window and watch spring come into bloom.
As she looked out of the window, she watched the breeze ruffle the flowers of the dogwood trees, and she remarked how beautiful they were.
Mom slept a lot too, sometimes as if she was in a coma. She’d wake up and exclaim about the angels surrounding and protecting her that she had just seen.
My sisters and I all had children and husbands along with full-time jobs. And it became difficult to balance those responsibilities with caring for my mother.
To make matters more strenuous, my father became a zombie and sometimes would simply leave the house. He was not handling this rollercoaster ride well. His wife of 43 years was very ill. His vibrant, Italian wife who had been by his side through thick and thin. She was his chef, his seamstress, his partner, the mother of his four children. And now she was dying.
There was no other choice than hospice.
We met with the hospice team that consisted of a nurse care manager, nursing aides, medical-social workers, pastoral care, physicians, RNs, LPNs and volunteers. They gave mom a bath, repositioned her in bed, gave her mouth care, and made sure she had her pain medication. Caring for a loved one in such a state as my mom is hard work, so hospice helped physical and emotional burnout.
And my family and I owe a great thanks to it for helping us help our mother pass into the hereafter with grace.
Inside of that ICU with the buzzers, nurses running around, the “Code Blues” and the “All clears,” it was painful to see the patients. But I was thankful knowing that my mother was never on a ventilator, tied down with restraints or wrenching in pain.
We took the road to freedom and comfort. We accepted her dying with dignity.
Sometimes, I watch a breeze blow through those dogwood trees my mom loved. They tell me about life, beauty and that, when it’s time, it’s OK to let out that last breath.
Before my mom was in hospice, it was something I didn’t know much about. To help you and your loved ones, I’d like to give you some truths and some misconceptions I’ve learned about hospice.
Misconceptions and truths
MISCONCEPTION: Hospice care is only for cancer or AIDS patients. TRUTH: Hospice also takes care of patients with end-stage chronic diseases such as emphysema, Alzheimer’s, cardiovascular diseases and neuromuscular diseases.
MISCONCEPTION:Hospice is just for the elderly. TRUTH: Hospice is for anyone facing a life-limiting illness regardless of age. 20% of Hospice patients are under 65 years old including pediatrics.
MISCONCEPTION: Hospice will accelerate the dying process. TRUTH: Hospice does not accelerate or postpone death. Their service is to provide the patients with comfort and minimal pain at the end of their lives.
MISCONCEPTION: Hospice sedates patients to manage their pain. TRUTH: Hospice assists the patient with physical and emotional aspects. From spiritual counseling to art and music therapy to occupational therapy and physical therapy.
MISCONCEPTION: With hospice care, I have to leave my home. TRUTH: Hospice care is provided wherever the patient may be, in their home or a family member’s home or an assisted-living facility, some correctional facilities, VA hospitals or in a hospital setting.
Debbie Moore-Black is a nurse who blogs at Do Not Resuscitate.
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