When Days End

Friday night…Saturday… Saturday night…Sunday…Sunday morning before dawn…that was how long we had to say goodbye. Now four months later I still wonder, “Did I do it right? Did I say things right? What if I’d explained it this way or that way? Here’s how I could have said it better. Can I have another chance to do this just right? Is there a just right?”

Here’s how it happened. My mother, having lived a long and good life until she was 93, left her house to go out to dinner, enjoyed an evening with friends and fell leaving the dinner party. She came through the hip fracture surgery quite well. She made the move to the skilled nursing rehab facility and had started physical therapy. She had her hair done. She made friends over meals. My dad came to see her every day. Once she was settled in, I went home for a week and a half. But while I was home with my husband and boys, I had strange dreams. Half waking/ half sleeping, the dream state felt like I was inside her head and could feel her suffering. It felt as if she was calling me, asking me to help her. In my head, I kept saying to her, “I’m coming. But I need these days at home. I’m coming as soon as I can. Please wait for me.”

Wednesday, as I was boarding the plane to go back to her, I got a call from the nursing facility saying that they wanted to take her to the hospital for a blood transfusion. Her blood pressure was low, meaning she could not get out of bed to do her physical therapy. Mom told the staff she would not go to the hospital. They wanted to send her anyway. I told them to wait. I’d be there that afternoon. When I arrived, she said she did not want to go to the hospital ever. I said okay. My father said okay. I took my father out to dinner.

While we were out, a nurse told my mother that, unless she went to the hospital, the nurse could not keep her safe…. My mom and I spent that night in the emergency room. The next morning brought a transfusion and that afternoon a GI scope. A huge ulcer was found and repaired. Progress? A turning point? We hoped so. But that night brought more bleeding, more transfusions, and discussion of further exploratory surgery. At that point, I asked to talk with the palliative care team. The nurse and doctor were visibly relieved that I had asked the question. Medicine is such a death denying culture. Who knows what torture my 93-year old mother would have had to endure if I had not spoken for her? Actually, I do know which is why I spoke. But I still wish I did not have to be first person to question whether more diagnostics, more treatment, were really in her best interest. Isn’t that someone else’s job? Well, as all good southern women say, “If you want something done, do it yourself.”

And I can’t say it was easy after the hospice choice was made. Isn’t that strange? We want to believe that if we choose palliative care somehow the situation becomes peaceful, beautiful, etc. It does beat the alternative. But often hospice comes so late that it is only a matter of days between the decision and death. In our case, there was no meaningful talk of taking her home; she was too fragile and my father too conflicted about having her in the house that sick. Instead, she was moved to a different part of the hospital, an oncology ward that was very quiet in contrast to the busy step down unit where she was. We worked mainly with the oncology nurses, not meeting a palliative care nurse or doctor until about 12 hours before she died. There just wasn’t time.

But more important and challenging than the logistics, was her process:

She asked, “Why have they moved me here?”

I explained, “So that you have privacy, have room for people to come visit, and because the unit you were in is for people who have just come out of surgery.”

Then, “Tell me again what is happening.”

Me: “You are bleeding from an ulcer in your stomach. These ulcers often come from inactivity. They tried to stop the bleeding but it has started again. They could do more surgery to try to find the bleeding and stop it again but we’re not sure it would not do much good. But we can do that if you want to.”

Pause.

Mom: “Maybe the bleeding will stop.”

Me: “Maybe.”

Mom: “I want you to look whenever you can and tell me how much blood there is.”

Me: “Okay, I will.”

And I did. And I told her the truth. The blood was still there, in the morning, in the afternoon, in the evening, and so much of it. And that is when she said, “Then I think this is the end.” Paralyzed, all I could summon up was, “Okay.”

Then, began what I think of as the “seesaw” period. On the one hand she sounded very clear about what was happening. She talked about her good life, friends, my dad, my husband, my children, and me. Yet, in the next conversation, she would talk about, leaving the hospital, living in the skilled nursing facility, but perhaps being able to go back home to visit. This made me cry and I replied, “Maybe.” In another conversation, when I used the word hospice, she was indignant. I asked again if she understood what was happening. “Tell me again.” I told her. She said, “I understand but never use that word [hospice] again. “

Whether doctor or patient, care-giver or cared-for, we want to believe there is one answer that is right and one answer that is wrong. In fact, the wrong answers are often easy to spot. But what about the right ones? I am glad she did not have tubes down her throat, crushed ribs from being resuscitated, or a mind addled from anesthesia. I am glad she had a quiet space to visit with friends, that my father could sit with her, and that there was a place for me to sleep so that she was not alone. I am grateful for the nurses who helped me prepare her body and brought me coffee while I stood watch from 3 to 6 in the morning waiting for the funeral home folks to arrive. But for all that was comforting, the uncertainty of the situation, the imperative of choice with no chance for a do-over is something to be bourn rather than resolved. There is no right path when someone is faced with letting go of a life they still love, no matter how small it is becoming.

Perhaps you wonder why I write about all of this. This is the third post I’ve written about my mom’s death. And it may not be the last. Is she paralyzed by grief you might ask? No. Is she okay? Yes, I am okay. But life is busy and death is such a demanding teacher: one that requires honor and attention for a subject we always want to put last on the list. “I’ll think about that tomorrow or maybe next week.” But we fail this class through avoidance. So I write to try and make the grade.