No More

“No more Emils, no more.” Mary said as her eyes filled with tears.  I had just given her daily injection of steroids in her left arm.  To my surprise, the medication squirted out of that same left arm about two inches above of when I injected her medication.

As I looked in her eyes, I could just see how tired she was feeling; I knew she was tired of 15 daily pills, daily injections of steroids, hospitals, needles, IV’s, experimental procedures, doctor appointments and pain.

I cleaned off the medication that was running down her arm and said, “Okay Mamas, no more.”

I remember when we took Mary to the neurologist and were given two options to prolong Mary’s life.  One drug had a side effect of a brain infection and the other drug had a side effect of an enlarged heart and leukemia.  By this time Mary was very limited in communication and was permanently in a wheel chair.  Mary couldn't hold herself up so we had to keep her strapped in so she won’t fall off her wheel chair.

The neurologist was insisting that her life could be prolonged but did not guarantee the Mary’s life would be improved with either drug.  “It would just prolong her life,” said the doctor.  “Really? What kind of life would Mary have?  She can barely talk; she can’t walk; she having problems hold her food down among many other medical issues. Will any of these drugs improve her quality of life at all?” we asked. “No,” said the doctor. “If Mary is given the drug with side effect of a brain infection, how will the brain infection be diagnosed? She is barely able to speak to us now” asked my dad.  “We would need to conduct an MRI but then we need to consider the radiation she will be exposed to,” replied the doctor. 

A dead silence filled the doctor’s office as we ran out of questions and options to help us make a clear decision on Mary's future. 

As all three of us walked out of the doctor’s office and as I pushed Mary in her wheelchair, we already knew that we were not going to be returning back.

When we got home, we researched both drugs that were suggested by the neurologist.  Due to Mary’s failing health, we knew both drugs had very grave side effects for Mary so we sat as a family and asked Mary what did she think, she replied, “No more, I just want to be home.  Can I just be home?”

“Yes Mary, we will keep you home and as long we can, okay?”  Mary started to cry as did we coming to the decision of “No more,”

It’s so hard for my family to come to terms of the decision of “No more” but that is what Mary wanted so we needed to focus on quality of Mary’s life and to think of her and not ourselves.

Slowly, every day that passed we had seen that all the medications in the world were not going to Mary any better.

I remember sitting in my own doctor’s office because I ended up coming down with bronchitis.  My doctor asked how was my family and I told him what was happening with my sister Mary and just started crying and said, “I don’t know what to do? My mom and I talked about placing Mary in hospice but we are not sure.  We are so scared and it hurts so much.”

My doctor told me that if you are thinking about hospice then chances are you need their services.  He gave me a brochure and I took it home to show my parents.