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What if I can’t make you comfortable?

By Jennifer
Posted on

I had the conversation with my parent.

My mother was diagnosed with stage IV Renal Cell Carcinoma two short months after her retirement. My mother, a dedicated nurse, had spent a lifetime helping others. Given a 4 week to 5 year prognosis, our family struggled to understand this devastating diagnosis and all of its implications. My mother was clear from the start about her treatment and end of life care wishes. She opted to forgo treatment as there was no effective Renal Cell Carcinoma treatment at that time. She also made it clear that she wanted to die at home with hospice care.
Through some sort of miracle, my wonderful mother lived for 4 years and 3 months without treatment. Ultimately, metastasis to the brain robbed her of her cognitive abilities and her mobility. The last 4 months of her life were extremely challenging for her as she was aware of her coming fate. Her decline began in March of 2007. Her endurance and physical agility were the first victims of her disease process, followed by her cognitive function. By the end of June of that year we moved a hospital bed into the living room of my parents house and that is where my mother would spend the rest of her time at home.
In the final two weeks of her life, her body began the process of shuting down. Her pain was intractable and the hospice kit that was given to us did not help us to manage her pain effectively. It became obvious that we would not be able to manage her pain at home enough to make her comfortable. Unfortunately, we never talked to her about the posibility that we might not be able to make her comfortable at home and that a hospice setting might be better for her.
As a family, when my mother was no longer able to actively participate in decision making, we decided to admit my mother to a hospice unit at the hospital where she had made her mark as a nurse. We had a great deal of guilt over not fulfilling her wish. However, the compassionate and holistic care that the hospice staff gave to my mother was god send and helped us to accept that we needed help to provide her with the best possible end to her life. I regret that I did not ask my mother “What if I can’t make you comfortable? What should I do?”

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