Two weeks ago I traveled to Chicago to be with my mom who was in the end stages of dementia and her life. How my mom was still alive was a mystery to all of us as she has had many things happen to her in these past few years that should have been the end. Somehow, though, she always recovered. This time was different, and as I hurriedly pulled things out of the closet and drawers, the same thought kept repeating itself. What are you supposed to pack for your mother’s death?
I flew out in the morning, my sister picked me up at the airport, and we went right to see Mom. She was not awake, her breathing was shallow, her eyes closed, and along with one of my brothers and his wife and my other sister we sat vigil in her small room. Many, many thoughts were going through my mind as the minutes and then hours ticked by and a lot of them were ridiculous. I became obsessed with the fact that the only light on was an overhead one. I hate overhead lighting and kept eyeing the lamp on a table behind her – a lamp I bought her at least twenty years ago. Finally I got up to turn it on – it was not plugged in and it wasn’t near an outlet so I sat back down. I made a mental checklist of what I want at the end – a lamp or two on, classical music softly playing, a diffuser going that smells like spring, quiet conversation, and if it’s nice out the window cracked open just a bit. Basically like a well-scripted scene from a movie which isn’t at all how most deaths go. After awhile of sitting in my own agitation, I announced that we needed to turn the ceiling light off and find a plug for the table lamp. My sister found something to unplug, we turned the lamp on, and my therapist would have a field day with that one. Hint: I was trying to control something completely out of my control.
The day lingered. My sister left for a doctor’s appointment. Mom was trying to cough, something she had virtually no strength to do and distress covered her face. It broke me and I got up and kneeled next to her bed, rubbed her cheek, told her we were there and everyone was going to take care of her, that she needed to relax because it was almost time to see Dad. “I think she needs morphine,” I said, as if I know about such things. It was already on its way and it wasn’t long before she got her first dose. Her face relaxed in minutes and so did the rest of us. My brother and his wife went to get lunch, another brother arrived from Florida with his wife and son. My sister came back with her husband, my niece, her husband, and daughter came, my nephew and his fiancee. My mom had a lot of grandchildren, seventeen to be exact, and she was adored by every single one of them. As soon as they came in her room and saw her they sobbed which pretty much broke open the dam.
At one point I walked down the hallway where some of my siblings were gathered. We discussed a date for the funeral which was weird considering she was still alive. These things, though, need to be sorted out especially when you have a very large family scattered across the country. My oldest brother and I went to get dinner. We weren’t gone long – maybe thirty minutes and when we walked back into the room to tell everyone the food was there my sister-in-law (who is a nurse) said, “I think she’s gone.” She checked her pulse and for a few minutes you’d have thought we were all dead the way we just stood there in disbelief. Two aides came in and verified it and while there was never any hope that this was going to end differently, it still felt shocking to say our tearful and tender goodbyes to the woman who raised us all. “Thank you for everything, Grandma,” my nephew said to her and I felt like my legs were going to give out.
Earlier that day one of the residents came by Mom’s room so we could meet her dog. It was a stuffed animal tucked under her arm and one thing you learn when you’ve loved someone with dementia is that where they are is where you’d better get to, and so we petted it and asked the woman what his name was. She smiled the whole time and said he didn’t have a name yet but he would soon and off she went to show him to everyone else which she probably does a dozen times a day.
A few hours later the woman appeared again outside Mom’s room. On a small shelf in the hallway was an old rotary phone and she picked it up and started dialing. “Mary, what are you doing,” one of the aides asked when they walked by. “I’m calling my mother,” she said. “The phone doesn’t work,” he said and she put the receiver down, looked at him, and said, “Well, it did yesterday when I called her.”
She walked down the hall and I watched her as she made another loop with her stuffed dog tucked under her arm, her ever-present smile, a room crammed with love and tears a few feet away, and I knew that like her I’d have a hard time believing that my mom was gone when it seemed as though I just talked to her yesterday.
