Guest Columnist: Time & Space

Editor: La Bloga-Tuesday continues a series of essays dealing with dementia, decline, and death. Although various kinds of dementias strike so many people with ferocity, not everyone "gets" Alzheimer's or one of the numerous kinds of cognitive diseases collectively known as "dementia."

Death is no mystery. Facing death ought not be a mystery, either. Today's Guest Columnist, Emily Devenport, shares her own final hours with her mother, and prescient final words, perhaps Mom had been there already. The "Ernie" Devenport speaks of is La Bloga's Thursday coumnist (with Daniel Cano), Ernest Hogan.  mvs

Time and Space

Emily Devenport

Thirty-six hours before she died, my mom asked me, "Do you think it's okay if I go traveling through time and space?"

I knew what she meant; I just didn't think she meant it right that minute – but she did. She had awakened bright-eyed and bushy tailed. When I asked if she wanted coffee, she said, "That's just for starters!" I suspected that was a bit ambitious. Mom hadn’t taken more than a few bites and a few sips for a while, a situation that had caused me some anxiety. When people die of extreme old age, they often can't eat or drink anything in the last days. Their bodies just can't process things anymore.

Fortunately, when she asked me that question about space and time, I had the presence of mind to say, "I don't see why not, Mom. That sounds wonderful." We chatted while I cleaned her up for the morning, and I said, "I'll fetch you a little water, and then we'll see about that coffee." 

"Okay," said Mom. "I'm going to go traveling through time and space, now." That was the last conversation we had. 

When I returned with the water, she wasn't "present" anymore. She had been checking out for longer and longer periods of time for the past year. By the time she died, she was only aware of things for about half an hour per day. When I tried to get her to drink, she clamped her jaws shut and refused. Later, the nurse told me that was an autonomic function, not a conscious refusal. 

She deteriorated rapidly, that day. I called a hospice nurse, who checked Mom's vitals and told me things were progressing normally. After the nurse left, Mom's breathing became more labored, and she sometimes had long spaces between, when she seemed to have stopped completely. I sat by her bed, wondering if I was watching her go. I told her I loved her and held her hand, despite an earlier experience we had with her about a month before she died – she had me call Ernie into the room and wanted both of us to hold her hands, and then she got this faraway look on her face. I believe she thought she was going to pass, and she wanted us there. But after a minute, she shook us loose and said, "Oh never mind." Having us hold her hands didn't help her go; it derailed the process. It reminded me of that scene in Little Big Man when Old Lodge Skins decides “Sometimes the magic works, sometimes it doesn’t.” 

By nightfall she got quieter. We went to bed, and I wondered if she would pass in her sleep. I felt a sad relief that she was too far gone to call out to me in the middle of the night. Over the past year, Mom had often cried out in alarm at all hours. “Em!” 

Regardless of how much you love someone, your first reaction to something like that is panic. Your second reaction may be resentment, and your third, sadness. 

When I would go in to comfort her, she would demand, “Where is everybody!?” She had lost her understanding of night and day, and I always had to explain to her that Ernie and I were trying to get some sleep. She would feel bad about that, and then she would resolve to go back to sleep, but that didn’t always guarantee peace for the rest of the night. Often, I would hear her calling out in panic again, just as I was dropping off. I learned a new appreciation for the character of Elinor, who took care of her invalid mother until she died, setting her up to be especially vulnerable to the machinations of the ghosts in The Haunting. The last night of my mother’s life, she didn’t have the self-awareness to call out to me, and yes, that was a blessing.

In the morning she was still holding on, and I talked to her some more. I said, "I love you" and kissed her forehead. I came in to check on her every half hour or so, and to sit by her bedside. Looking back, she had left the world when she told me she was going—this was just her body shutting down. 

By the time Ernie got home from work, I began to wonder if I weren't making my mom's situation worse by not finding a way to get water into her. I called a nurse for an emergency visit, and she set me straight. She was the one who told me how eating and drinking shut down at the end. She gave me some sponge-pops for wetting the mouth, but when we tried one on Mom, she clenched her jaws shut on the stick. "That's automatic," the nurse assured me. "She's not upset and she's not in pain." She measured Mom's oxygen level with a monitor that goes on the finger. In a healthy person, the reading should be above 98%. Mom's was 72%. "She could go tonight," said the nurse.

We said goodbye to the nurse, who ordered us not to stay up all night. Then I wrote a group email to my sisters and brothers, telling them what was happening. Five minutes later, I checked on my mom. She was dead. She looked peaceful. She was well on her way through time and space.

The most powerful emotion I felt when Mom died was relief. I had already begun to grieve a year ago, when I saw she was starting to go, so I had plenty of time to work through it. It wasn’t so much the loss of her mental faculties that bothered me; Mom never completely lost herself, and I was able to gain appreciation for the person she became rather than obsessing over the partial loss of the person she had been. What challenged me the most was the loss of her dignity. She required adult diapers, and I was the one who changed them. Don’t underestimate how demoralizing and nauseating that task can be, though it did have its humorous moments. For instance, one morning when I was trying to shift her in bed so I could clean her up, I said, “Mom, we need to take this off.”

She began to sing, “’Take it off, take it off!’ cried the boys in the rear, ‘Take it off, take it off!’ that was all you could hear . . .” 

Because I was right there with her, I’m not burdened with guilt or regrets. Mom handled it. She decided how it should go, and I honored her wishes. She didn't feel sad or upset that people weren't flocked around her deathbed. The nurses saw beauty in her process. They were touched, and a bit awed.  That's how I felt, too.    

I think the picture I’ve posted here of my mom was taken about 15 years ago. She would have been about 85. You can see why we thought she would last forever. She kept her sense of wonder and her humor until the very last minute. In the last couple of months before she died, she had long, happy conversations with deceased friends and relatives, including her sister Katey, who grilled me, through Mom, about her care. "Who is bathing her? Who is doing the shopping?" I managed to give Katey answers that satisfied her.

Weirdly, it was the COVID crisis that gave me quality time with Mom in the last year of her life. I was furloughed from my job, and I collected enhanced unemployment payments while I stayed home with her and took care of her. It as an amazing gift. I'm not sure how I would have managed it if I had been forced to work while trying to be a full-time caretaker. I'm so grateful.

In August, Ernie and I will be scattering Mom's ashes in a couple of her favorite places in New Mexico: the Very Large Array of radio telescopes near Socorro (I think that's where she got the idea about time and space – from the film in the visitor's center, narrated by Jodie Foster) and a farm in Truchas. We've converted her room into an office, and we're planning road trips, which my mother taught me to love. I'm learning how to play her favorite music on the piano. When someone leaves a void in your life, expand into it.

100 years is a long life. I celebrate my mom.