Standing in the doorway of my parent’s garage I embraced my mother for what seemed like an eternity. Deep down inside I knew (and perhaps she as well) that difficult days lay ahead. It was during this visit that I realized how much pain she was experiencing. Unbearable as it was she still refused to open a bottle of liquid morphine prescribed by her physician. She finally relented after much chiding from me.
“This tastes awful!” I remember her saying after handing her the teaspoon.
“Mom, if it stops the pain then take it,” I explained to her. “That’s why the doctor prescribed it.”
Perhaps at this stage in her battle against cancer this act signified surrender. After undergoing chemotherapy treatment, hair loss and the rigors of fighting this aggressive disease, she may have sensed this would be the equivalent of throwing in the towel — giving up.
She left Florida just once after learning she had small cell carcinoma, traveling to attend our oldest daughter’s high school graduation ceremony just two months prior to her death. Her oncologist suspended her chemotherapy treatments and upon hearing her inquiries of making the trip he agreed and commented the break would be good for her. To me, that was code for “there’s nothing more I can do as your doctor so spend your remaining time with your family.”
I suppose it’s the human will to live that compels those facing terminal illness to refuse to submit. It’s that fighting spirit that my mother was then displaying. Sure there was denial in accepting her fate. But she would never speak openly of her own demise. She herself would decide when she would leave her family.
Without a doubt, modern medicine today prolongs life. However, at some point in life-limiting illnesses, time is measured by the degree of pain the individual encounters.
This is where hospice steps in. Relieving pain is the first priority of hospice care. Pain and the symptoms associated with it like nausea, fatigue and breathlessness.
So when I learned my mother’s time was short I made the 12-hour drive from Tennessee to Florida to be by her side for the last time. It’s difficult to describe how surreal the experience was for our family. To this day I still can’t recall the name of the hospice nurse tending to my mother, only the kindness she demonstrated and the reassurance she gave our family.
I didn’t expect to witness my mother in the condition I found her. This wasn’t the same woman I embraced a few weeks earlier. Her eyes were closed; she gasped for breath, and was unable to communicate. I learned hospice arrived just the day before I did. They provided a hospital bed and other necessary items. The hospice nurse continued attending to her needs. She explained everything in detail to our family.
“She can hear you,” I was informed. Though holding her hand in mine didn’t produce any sign of acknowledgement. Saying goodbye was my blessing.
This seems to be the norm for people receiving hospice care. In fact, nationally 43 percent of Medicare recipients facing life-limiting illness with six months or less to live receive hospice care. Here in El Dorado County that number is just 31 percent. Many like my mother will receive care for a very brief time. About 30 percent of hospice patients receive care in single digit days. This is unfortunate since outcomes can be improved when someone is on hospice for a longer period of time.
At one point that evening a fentanyl patch was applied to my mother’s lower leg. The drug absorbed through the skin is 70 percent more powerful than morphine. In just a few minutes her breathing eased and she appeared much more settled.
Our mother died later that evening. And had it not been for hospice and the continuous care she received from this one nurse, I can’t imagine how much more difficult this life-ending experience would have been for my mother and our family.
Today, as a member of Snowline Hospice Board of Directors, I hear many accounts of the palliative care our local agency provides. I’ve witnessed first hand the dedicated volunteers and staff providing end of life needs. This includes not only the experienced nurses but those working in our thrift stores helping to raise the necessary funds so vital to our mission.
For me, it’s an opportunity to give back. Not just for what this organization did for my mother but for the countless others in our county that will one day face a similar fate.
Richard Esposito is publisher of Village Life and the Mountain Democrat. You can reach him at [email protected]