Mom arrived around noon to the room she would live in until she died. She knew the facility, although this was a new room. She expressed appreciation for the photos and flowers I had decorated it with. She thanked the two young men who had transported her by ambulance from the hospital. She was weak, but knew how to be polite. It was Friday, September 21.
Her arrival marked the beginning of the end. An end that came nine days later.
My memories of those days are muddled.
My sister and brother-in-law came over Sunday for a day. They brought homemade foods with them, part of our plan to go up late in the afternoon and have cocktails and appetizers with mom. I had heard that once someone was on hospice, they could have wine. Mom had mentioned over the summer that she missed her glass of wine. When we arrived, we had a bottle of chilled, white and a wine glass with her name written on it.
The nurses would keep the bottle in the medicine room; if mom wanted a glass, she could ask for one. There was something oddly comforting about picturing mom asking for and having a glass of wine. The image felt familiar and ordinary; it was as if by having her do something ordinary, life would again be the same. It would transport us away from the setting she was in and the diagnosis she had and carry us to a place where she was whole again.
The truth is, the glass of wine she had with us that Sunday was the last glass of wine she ever had. Did she enjoy it? I don’t know. I think the pain meds affected her taste buds and the cancer was steadily draining her from us. A change had occurred between her arrival on Friday and our picnic on Sunday, although I don’t think I was conscious of it at the time. Or, maybe I simply didn’t want to admit it.
I was scheduled to be there through Saturday morning, the 29th, and then fly home. I had five more days; five days during which I wanted to spend time with mom, and help dad.
I try to recall when we met with the hospice coordinator. Oh, right: Tuesday. Given mom’s swift death, they had little time in which to provide support, yet I was grateful we could call them when we had questions about the morphine mom would be receiving, how it would be administered, and when to increase the dosage frequency.
After the hospice coordinator met with mom, she made it clear dad needed to function as mom’s power-of-attorney. I realize now how helpful it was for us to hear that from her. For my dad or me to come to that conclusion would have been to go against fundamental qualities that made mom who she was: forceful, independent, self-directed. We needed an outsider, experienced in end-of-life realities, to tell us it was ok to do that.
That permission allowed us to navigate steps we needed to take to transfer ownership of mom’s business to my brother. My practical, get-it-done persona moved things forward, obtaining documents and conferring with attorneys, even as it felt odd to be going to a notary to witness dad’s signature transferring ownership, then heading over to see mom.
We tried to find ways to interact with and engage mom during our time with her. I brought photo albums up; she pointed to people and named them, her mind still able to mostly recognize her own history. I found loose photos and added them to her wall, mom haltingly guiding me on placement. We coordinated skype sessions with my sister and daughter. My brother and his girlfriend made regular visits. I massaged lotion on her hands and face, brushed her teeth, fed her, rearranged flowers, read her cards. Dad brought his harmonica up, and sat by her bedside playing songs he thought were long-forgotten, but which returned.
Mom continued to eat, at least her first few days there, and it felt good helping her. Meals: another one of those ordinary things you cling to in the face of the abnormal.
But everything seemed to be slowing down: her eating, her answers to questions. She was weak; and often seemed in pain.
We tried to navigate the world of morphine. Mom didn’t have a morphine pump, one of those things that allows the patient more control over delivery of the medicine. For her to get more, she had to ask, not something she was likely to do. Dad knew mom had a high tolerance for pain and a low willingness to ask for help, and asking for morphine was akin to asking for help. We talked to hospice and the nursing staff and they made adjustments to ensure she would receive pills more frequently.
Friday morning, as I walked through the halls of the facility to see mom, one of the nurses intercepted me. “She’s having trouble swallowing her pills,” she said. The look on her face indicated to me this was a sign. A sign that death was, perhaps, closer than I realized.
“I’m scheduled to fly back to California tomorrow morning,” I said. “Should I try and extend it?”
“If you can,” she answered, “I would.”
“How long should I stay?”
“A week would be good.”
That was one of those sharp moments I remember with deep gratitude. The nurse was a blessing; I will be forever grateful she pulled me aside and shared her concerns about mom’s condition. Her comment led me to extend my stay another week. Had she not done that, I would have left the day before mom died.
The last two days are more muddled than the previous ones. I remember receiving a call from the care facility around 5 a.m. on Saturday. The nurse called, concerned about mom’s state, her pain, her distress. Her saying something about “going home.”
Memories of Saturday consist of disjointed pieces: going up to see mom; hearing her labored breathing; aware the cancer had drained even more of her; sobbing in a chair outside her room; telling her, as I left, that if she wanted to be alone to die, well, then, I’d be gone for a bit; talking to nurses; coordinating her morphine; a trip back home, then back to town with dad to get a document notarized, an awareness of an uncertain deadline.
Sunday morning brought another 5 a.m. call. I contacted my brother and his girlfriend. I got dressed and told dad I was heading to the facility. He would join me in a while. When I arrived at 6 a.m., my brother was sitting by mom’s bed, holding her hand, stroking her hair. I joined him on the other side. If mom knew we were there, we couldn’t tell. Her eyes were open, but unfocused.
Mom’s breath rattled. I’d heard about death rattles and now, with the sound before me, I understood what it meant.
We sat together for a while, before my brother needed to leave for work. His girlfriend arrived shortly thereafter. I’m not sure what she and I talked about as we sat on either side of the bed: my mother, family, how mom seemed to be in pain, how difficult it was to watch.
I called my sister and we skyped, giving them a chance to say their farewells.
I’ve been told people can hear what you say in situations like this, even if they can’t indicate to you that they do. And I thought, heck, mom’s hearing wasn’t so great before she got sick, why is she suddenly going to be able to hear now? Somehow that thought eased my own internal tension. It felt real, and like something mom would laugh at.
Nurses checked in and brought morphine as scheduled. We talked about how mom seemed to be in pain, and they said they could increase the frequency of dosage. “It will, however, speed things up,” they warned.
“That’s ok; we’re all ok with that,” I said.
We sat with mom, listening to each breath, each one seeming more difficult than the last. The nurses gave us some idea about what to expect as mom neared the end. What specifically they said, I have no idea; I just know it reassured. Their presence was reassuring. My brother’s girlfriend was reassuring. We were there to comfort mom and to be with her as she departed this body; a body that had caused her much pain over the past few months.
Her impending death was, at this point, something we hoped would be swift. We wished it could have been different; that the path of discharge that had been promised only weeks earlier could have been fulfilled. The whiplash we experienced when we got the terminal cancer diagnosis was severe. But now, knowing this was the last chapter of her story, all we could hope for was an end that came as quickly and gently as possible.
When she took her last breath the morning of September 30, 2018, we were grateful she was no longer in pain.
Photo source: Walk the Goats
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