And here's something even more important: my mother was angry about what happened to her. She really expected that, in her much weakened state, she would die very quickly if she stopped eating. But that is not what happened.
So, I am writing this post to give voice to her anger and also to document one story about the consequences of our current medical system which helps people to live but will not help them to die. I could not even begin to tell you in every detail what it was like (and only my mother knows what it was really like), but here are some day to day notes from my mother's 17-day ordeal. And yes, there were some good moments too, some great conversations that she had with us along the way — but if she could have chosen the moment of her dying and done this her own way, it would not have looked like this, not at all.
Day 1: My mother's eating did not taper off. She simply announced to my father that she was not going to eat anymore and told him to call hospice to see what they needed to do. She had arranged for hospice about two months earlier; her medical situation had been in a steep decline due to lupus, emphysema, and a serious but undiagnosed neurological ailment that ultimately made it almost impossible for her to stand up — the hospice intake form said simply, "failure to thrive."
Day 4: This is when a hospice case worker called me to tell me what was happening; my father was not able to talk on the phone about it. I am grateful to hospice for being able to relay the news, and I bought a plane ticket immediately.
Day 5: My mother was in bed but very glad to see me. With assistance from my father and me, she was still able to get out of bed and slowly use a walker to make her way to the bathroom and to the living room. She wanted to celebrate my coming with a small glass of Coca-Cola. She had explosive diarrhea as a result, very distressing to her and to my father. No more Coke; hospice recommended diet 7-Up.
Day 6: Realizing that this was going to be messy, I ordered washable mattress pads for incontinence. My father had already bought a large supply of Depends, which were great; my mother found them very comfortable and reassuring, although she wanted very badly to go to the bathroom on her own.
Day 7: My mother was now no longer able to use the walker to get to the bathroom, but we were able to persuade her to let us push her in the wheelchair. During the night, she wet the bed; when I came in to check on her and went to sit down next to her, she told me not to sit there because it was wet, and then she started to cry because she had wanted to keep it a secret — she thought if I just had not sat down there, she could have kept it hidden from everybody. I told her it was okay, and in the middle of the night I stripped the bed and remade it while my mother sat by the bed in the wheelchair. "Why am I still alive?" she asked.
Day 8: My mother's sense of despair was becoming greater and greater as it became harder and harder for us to take her to the bathroom; my father and I were not going to be able to do that for much longer as she grew weaker. My father is strong and sturdy, but he is 87 years old, and even with both of us helping, it was getting very hard to us to move my mother from the bed to the wheelchair and then to the toilet and back. Hospice brought by a bedside commode, and the sight of it appalled my mother; she declared she would not use it and that we had to take her to the bathroom, no matter what. The hospice nurse told us to give her Paroxetine and Lorazepam when she became really upset, and we did. It calmed her, but like any calm from out of a bottle, it was not a real calm. Her anxiety and distress returned regularly.
Day 9: Things were now getting really bad; my mother was effectively bedridden, and this was extremely upsetting for her. She begged me to help her to the balcony so that she could jump out of the window. "Like Birdman," she said (she loved that movie). We continued to give her Paroxetine and Lorazepam for her anxiety and distress.
Day 10: Hospice told us that my mother was starting to feel the painful effects of her starvation and limited fluid intake, although she was continuing to urinate regularly and she had to do so in the Depends, which upset her very much. In order to alleviate that pain, they had us start her on doses of morphine every six hours, in addition to the Lorazepam (no more Paroxetine).
Day 11: My mother's anger this day was at its most intense. During the morning when I was changing her, she moaned, "Whose bright idea was this?" and "Am I going to die now?" She cursed and swore at the "goddamned bed." My mother is someone who uses swear words only rarely, and in all her decades of serious illness, she was never a complainer. But we had crossed all her limits now: this was not what she had expected. Her sister arrived that evening; we had planned that I would leave that day and trade places with my aunt as needed, but I stayed.
Day 12: On this day, our hospice nurse thought the end would come in the evening. By now my mother was completely debilitated; she had been on the morphine for two days. She was still lucid, but very weak. In the late afternoon, what we thought was the death rattle began: loud, deep snoring noises, something which had not happened before. But she did not die. The death rattle stopped after a while, but her breathing was very strange. She was completely unresponsive. I thought she was in a coma from which she would not awake. I was wrong.
Day 13: The crisis. When I went to check on my mother in the night, she was moving fitfully and burping loudly. I sat there with her, and she suddenly woke up, burped loudly again, and looked at me in distress. "Oh," she said. I asked her if it hurt. She grimaced, and burped, and then she vomited on herself and the bedclothes. And then she vomited again. It was around 4AM. In despair and panic, I awakened my aunt, and we called hospice. They sent an on-call nurse who is the greatest hero of this whole saga: even though our bed set-up was completely NOT amenable to what we had to deal with, she helped us to clean up, change the bedding, and move my mother to a more comfortable position, and then she taught us how to administer her medications ground up and delivered via syringe into her mouth. The nurse's best guess was that this was not vomit, but instead fluid from my mother's lungs. Apparently when someone is this long in dying, the fluid system simply gets out of control, and the fluids go where they go.
Day 14: At this point, the hospice doctor allowed morphine up to every hour, along with Haldol and Lorazepam. My aunt went to the CVS and got a pill crusher so we could grind up the medications; in the night, the nurse had shown us how to fold a piece of paper and grind them in the folded paper, but the pill crusher was easier to use (the Haldol was really hard to grind up). The hospice nurse supplied us with the syringes, along with little blue sponges on sticks that we could use to moisten my mother's lips. We were told to let her suck on the sponges if she wanted, and that diet 7-Up was still okay. The nurse had warned us how easily her skin might tear now that her fluid system was breaking down; my aunt and I were really unprepared for any of this, and so we found a personal care assistant, someone who worked for another person in my parents' apartment building. She was very kind.
Day 15: Because we had been administering morphine since Day 10, and now more frequently, we had to refill the morphine supply that hospice had originally provided in the "Comfort Box." My mother was still able to carry on quite lucid conversations, although she was sleeping more. One of the hospice nurses told us that it was possible for this ordeal to go on for a full three weeks or even a month (her own mother had lived for a month without food this way), so we decided that I would go home for a few days, and then come back when my aunt had to leave, which would be on Day 18.
Day 16: Despite not having taken any fluids except from the syringe and the little sponges for over 72 hours, my mother continued to urinate; thank goodness for the wonderful assistant whose expert help was desperately needed at this point to change my mother's diapers (no more Depends), and to roll her safely on the bed.
Day 17: The hospice doctor announced that while nothing could be certain, the end was probably very near. My mother's extremities were now cold. And so it was: she died at last on that day, Day 17, of her much too long ordeal.