Thursday, March 7, 2013

Removing the tube

Yesterday in class we had a lecture about Advanced Life Directives. This brought up a lot of painful memories for me that have made me cry a lot in the last 24 hours. I wrote the dean a letter that I copied below. I have not re-read it because it would be too difficult, so I am sorry for the spelling errors, etc. Today I went for a run and smiled the whole time. This is a good thing to process, but very difficult and will take a long time.

Hi Dr. Babineau,

Yesterday's lecture brought up a lot of issues for me and another student suggested I briefly talk to you about it. I took responsibility for my mom's life and she took chemo for me. In the process of me giving up my previous graduate education and moving back home to be with her I guess I proved myself the most medically capable in my family and the one people would trust with big decisions. I should back up. Before I was born my mom had a dog, Zorba, who was a little terrier or poodle, or something small. It hated my dad because my mom belonged to Zorba. When my mom had to put Zorba to sleep she saw that my dad couldn't handle the decision. So she had advanced directives put into writing that said if after two days on life support she had no hope of recovering to her previous functioning level (i.e. she didn't want to live with depleted mental abilities) she wanted the breathing tube removed. She put her sisters in charge of her breathing tube because she saw how difficult and painful that decision was for my dad, even if it was the right thing to do.

My entire life my mom made us firmly aware of these advanced directives. Especially aware after my sister's friend in middle school was hit by a car, flew 15 feet in the air, landed on her head, and was in a coma for over a year and came back going from the school's valedictorian to being mentally retarded. My mom and I visited her a lot (she learned my name and asked for me when I didn't know her before the accident and yet couldn't remember my sister's name). Caring for Lily after the accident, visiting her in the hospital then at home, was an important experience in my life and in my and my mom's relationship. One that no one else knows about, though I spent much time doing it.

Anyways, when my mom had her final seizure from her brain tumor and was intubated and brought to the hospital, she had already lost most of her capabilities, she couldn't feed herself, she couldn't name the months backwards, she was living her worst nightmare. I had asked her previously if she wanted me to be responsible for saying no to the tube and she had said yes as adamantly as she could despite being unable to say much more. It was horrible that day coming home from the hospital, she was only able to open her eyes, being paralyzed all over other than that, and seeing her blood on the floor with syringe wrappers, and slowly cleaning it up by myself. My heart completely breaking. At the hospital I had grabbed her hand and she had rubbed it with my thumb very soon after the ambulance arrived. That was the last time she ever moved her hand, showing me that she knew I loved her and I was there for her.

My family fell apart very predictably. Everyone was malfunctional. Her sisters came down and were just overwhelmed with the tragedy. My dad was extremely lost as he had been for so long. My sister and I began to have an extremely antagonistic relationship and she ended up punching me in the face when I asked her to leave as she was talking loudly on the phone while I was reading to my mother, making me bleed. My mom's eyes had kept roaming, looking for where the other voice was coming from whenever my sister started talking. For some reason, this was extremely distressing to me that I couldn't just read to my mother. I know how irrational and crazy family can get. When we have to change our lives to watch someone we love so deeply die it makes us unpredictable and antagonistic and defensive and strange.

So no longer rambling, when it came down to it my mother's sisters didn't do their job to remove my mom's tube and kept saying that it was my dad's responsibility. My dad told me he thought my mom was glaring at him every time she looked at him, incriminating him. So I went to find the advance directives to bring them to the hospital and take the responsibility off of everyone's shoulders and put the burden of making the decision to honor my mother's wishes by killing her onto my own shoulders. I know that it is letting her die, but there is something about saying I am removing her life line that feels akin to shooting a horse, it feels like a merciful killing. And I was willing to do the killing because as I took responsibility for her life, I was willing to take responsibility for her death. I left the advance directive out overnight so that people could be aware of my intentions and my family went crazy on me.

I didn't bring it in because they would have never forgiven me. Two weeks later my sister, my dad, and I all sat together as I watched the palliative care doctor persuade my dad it was time to remove the tube. My dad looked sick and his eyes bulged out of his head. He was making the decision that was the most painful and horrible decision to make and was not his to make. Unfortunately by the time we removed the tube my mom was out of status epilepticus and stabilized and lived for another month in a paralyzed-semi-comatose state. For another month she could have died at any second. We were all complete wrecks and spent most of our time with her in hospice. It was hell. I believe I made the right decision by not honoring my mother's wishes because I know she loved my father and fought to live to give him strength. Letting him have whatever modest amount of control he could have in the most nightmarish situation imaginable was what my mother would have wanted. But the amount of pain wrapped up into those memories is immense and difficult. I saw a therapist and still speak with her when I need to. But that doesn't change the painful tragedy of that experience. 

One thing that I didn't say that I wanted to tell the class is that when we had that meeting to remove her breathing tube, the palliative care doctor cried with us. She felt the sheer tragedy that was previously unimaginable. She saw my dad's pain as he had to make the decision to let the love of his life die and that he could not save her, that no one could. Those tears were comforting and kept me in the moment, allowing me to acknowledge that this was a horrible situation. Otherwise I would have put up emotional walls and a whole defense system to protect myself. But this was a tragedy so great that it would make even the strongest person with strong walls break down into tears.

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