A week ago today, we were talking to Julie’s oncologist about her worsening condition. She had mostly recovered from her pneumonia diagnosed a week earlier. Breathing was good, oxygen levels good, but pain, fatigue, nausea and general fatigue unrelenting. Her doctor kindly assessed her situation, and expressed doubts that she would ever improve significantly. With much empathy he discussed hospice care, and told her that it might be time, and that he would support starting hospice care if she wanted. She cried and nodded agreement. We left with that option in mind and with a plan to discuss it more and to let her doctor know what she decided. He made sure she knew that he was always there for her, and that this didn’t mean he was giving up on her.
Hospice care is end-of-life care. One of the goals of hospice is to help people die in peace and comfort. People receiving hospice care generally do not receive ongoing medical care designed to prolong life. Hospice medical care is provided to alleviate pain, suffering and to provide comfort. For Julie, this means that she would stop getting IV nutrition if she started hospice care. Since she is not eating, she would not live long on hospice care.
For the rest of the day, Julie avoided the topic of hospice care. Concentrating on a topic and making a complicated decision is hard. The next morning, I told her that I was going to let her doctor know what she wanted to do. She said, “I just can’t decide to do that (go on hospice care).” I said, “That is fine, you don’t have to decide now. We will just continue the present course and plan unless you change your mind.”
This past week, sometimes I think she is feeling a little better, but at other times she seems to be worsening. The roller coaster ride…only she is not happy, no thrills. Two days ago she told me that she wants it to be over, and would be ready for the end, if she wasn’t afraid of leaving us.
Last night she sobbed as she got into bed, and this morning she sobbed as she got out of bed. I gave her pain medication, and she slept. At lunch today, she did not want to get up, but I gently persisted and she sat at the table and we had lunch together, she ate very little. She cried off and on, and she asked me to read to her before I left, which I did for 5 minutes then put her back in bed before I went back to work.
Julie may not ever decide to leave this life. She might get to the point where she is unable to decide anything. I am not pushing her one way or another. I try to help her discover what she wants, without injecting my own opinion into it. That is hard, lots of conflicts for me. I hate that she suffers, she knows her pain, yet she chooses to endure it rather than end it. I just treat it as much as I can without totally making her unconscious all the time. Darn! This is hard!
This past week, we have talked more about positive outcomes, live or die. I have always been serious and sad with her. Now, for her sake, I am acting like a cheerleader, always trying to be upbeat and positive, hoping that it will rub off. Talking more about the miracle of Jesus Christ, paving the way for us to return to God. Talking more about happiness, life without pain. Talking about Julie sending her grandchildren into life. Even talking a little about what we will do after she leaves, living on with her loving memory and trying to make her proud of us always.
By nature Julie is a happy, fun loving, optimistic person. I have mourned with her extensively. I know we will yet mourn grievously. But for the moment we are fighting fear, doubt and despair. I will cheer for her, and help her have courage as she finds her way.