The Search for Light.

In a Complicated Mother-Daughter Relationhip + in the Recesses of Dementia.

From the series Calling the Birds Home by photographer, Cheryle Saint Onge.

My mother died in her bed at her nursing home. I was on the other side of the country.

It was 2020, the first year of the pandemic. I had built and was managing a free pantry in my front yard that supported countless families across Vegas in need of their next meal, resources, access to services. It was not lost on me that while I was helping strangers, I was unable to help my own mother make her transition to death.

I confess, I was also relieved. It’s easier to care for strangers than it is the most transformative person of your life.

The last call I had with her was the one you might expect. The hospice nurse noted all the signs that signaled the end of her life, and called me so we could say our last words. Honestly, we had said goodbyes in our various callous and deeply entangled ways long before.

The next-to-last call I had with her was one where she had imagined that my youngest child, Desi, had burned alive in a house fire. She was panicked and bereaved, openly sobbing. When I consoled her and told her the baby was fine, that there was no fire, her response was dementia-like: “Oh, okay,” she said, flatly. And then went on talking about something else.

My mother was deeply loving as a parent. There was never a child in the world loved more than me, I am sure of it. She and dad adopted me after years of not being able to conceive. She held onto me with the rigid, often strangling, tightness of a woman who never wanted to lose the thing she had waited her whole adult life to have, and finally received. I was the axis on which she spinned.

In return, I loved her with my whole being. I agreed with everything she thought and said. I couldn’t imagine her being wrong about anything. Being seen by her, and having her light shining on me, is still one of the most intensely miraculous and powerful experiences of my life.

But mom was complicated. She was a wounded animal, who could not stop being wounded. She was equal parts damaged and equal parts dangerous because of it.

The first ten years of my life were damned near perfect. I thought she and my father were perfect. They made me feel perfect. Life felt pretty perfect. But as I got older and had independent thoughts and desires. Differing points of view. I revealed myself to be not-so-perfect or even wanting to be their version of perfect. She was threatened. I often said that my parents loved me, but maybe they didn’t like me so much? All of this was philosophical, a feeling that I hadn’t quite sussed out, until the day I came home from college with magenta-colored hair, a public and visual sign of my changing persona. She forced my head under the tub spigot and held me there until it washed out pink and shameful.

She wanted me contained. I wanted to run away as fast as I could. We would be like this until her last breath.

My mother comes from a long line of people who lost their minds leading up to the end of their lives. My grandmother (Nana, mom’s mom) lived with us. Nana was convinced we were under attack from Russians. She had long rambling arguments with a coat tree in the corner of the foyer. She refused to bathe or change clothes. She let me smoke in the house when no one was around.

Nana had the distinction of being an excellent grandmother and a shitty mother. I think mom took her in so she could fix their relationship, maybe get some of what she didn’t get as a kid? It didn’t work. It made my mother impossibly sad. And that saddness settled into a more entrenched form of anger and resentment.

I often wonder when my mom’s dementia began. When did her hurt become brain disease? They are so co-mingled. One bleeding into the other. All I know is that the years after Nana and Dad died were an abyss for my mother.

She talked about volunteering with hospice, but never could make it happen. She calmly and willingly gave up her car because she no longer felt safe driving. I tried to get her to let us move her out to Vegas. She refused. I stopped asking. She was an organized and meticulous human, so she was able to stay on top of things with notes and lists. She wrote checks, paid bills on time.

Emotionally though, she was a wreck. She drove people away. Relatives, old friends, friends at the retirement home. They ghosted her, stopped calling, walked away. She was unbearably rude to people in conversations.

What my mother always had was complexity. She was angry and hurt, sure. She always had that lacerating temper that could froth over us at any minute. But she was also funny as fuck, made brutal, but spot-on observations of people, curated fun and elegant holiday parties and celebrations. She laughed louder than anyone in the room, and could be enormously generous. Dementia took her good things and left her with just her liabilities.

The years I disengaged were the years she needed me the most. But I could no longer handle it. She didn’t speak to me for months when I got pregant with our first baby, Lucy. And when she did, she screamed at me for shaming the family and slammed the phone in my ear, called back and did it again. Over and over. For months. I was 39.

The phone slam was our way of waging war against each other. Back then, you could really put some heft into it and bang that receiver into the cradle. It was dramatic. It made a statement. When I was younger and she hung up on me, I called her back, over and over. Left sobbing messages on her machine. I begged her to talk to me, to shine that light on me again. But as an adult, I punished her. She hung up. I refused to call her back. I let her stew in it for days, sometimes weeks. I punished her the way she punished me. I never picked up on my own hypocrisy.

During our third pregnancy, she told me she was secretly praying we wouldn’t have another baby. When we miscarried, I blamed her. Our relationship never recovered. I could never get past her working against us. I did the minimum: I called to check on her. We visited. But I stopped including her in my life. She was an elderly lady, a damaged wild animal that I was tethered to, and had to care for. But from a distance. I didn’t let anything she said touch me. I gave up on her.

By the time we adopted Desi and Raffi, she barely made a connection to them. “When is it my turn?” and “These kids are getting the love that should be for me.” She said they weren’t really our kids, like Lucy and Edie, who came to us biologically. This blew me apart and called into question whether she thought I was really her kid? It opened up a bunch of adoption hurt for me. She never picked up on her own hypocrisy.

When we visited, I sat with her in her living room. We silently watched Dr. Phil rerun marathons while David took the kids out. She loved the kids in theory, but they irritated her quickly and for little reason. She expected them to sit quietly and watch Dr. Phil. To not make a mess. Or run down the hallways. She stopped engaging with them. She only wanted to interact with me and in angry one-sided rants. We visited less and less. There was no longer a point.

I chose photos for this essay from the series Calling the Birds Home by photographer, Cheryle Saint Onge because I love the weightlessness of the bubbles floating in air and the froth building up above the rim of the glass. The sun streaming through spraying water. The muted joy and playfulness, even as dementia sets in. My mother and I didn’t have any of that. Nothing was muted.

St. Onge does something beautiful here: She uses photography as a way to make a connection with her slowly diminishing mother. In the same way that memoirist, Elissa Altman is able to save herself and bring clarity and connection to her relationship with her difficult mother by writing about it. I admire this so much.

At first, St. Onge stopped taking photos altogether when her mother was diagnosed with vascular dementia. Then” “…because I needed some happiness, some light in the afternoon, these portraits of my mother began.” The work became medicine for her mother’s abbreviated future. They were in the moment, focused on the right now. The photography helped her connect herself and her mother to other people, something critical for both patient and caregiver.

“…when I leave my mother behind, people find me. They want to tell me their stories and they want to hear mine,” Onge writes, “It's a beautiful back and forth, much like a true portrait. Because of the dementia, we have no conversations. But we do still have this profound exchange - the making of a portrait.”

What would it have meant to my mother and I if I had used writing as a way to make sense of our mother-daughter experience? To make connections for us both? I don’t know. Because I ran away from all of it.

I couldn’t have made it back to her nursing home to be with her as she died. The pandemic ensured that. But I no longer regret saving myself in the ways that I did. I used the tools I had. As did she. I’m working things out in therapy, looking at my own patterns and mistakes. Breaking legacies, I hope.

When Edie (18) came to me with issues from our relationship that she uncovered in therapy, I tried to stay present, to listen to her, to not give into the need to defend myself or to be right. Edie and I are not perfect either. But we did what mom and I couldn’t. We faced it and worked it through. We keep working it through. We won’t quit. Our mother-daughter life is not running away.

I’ve finally processed the last paper work for mom’s estate. It has been five years since her death. I’m letting her go. I’m choosing to think of the enormous light she gave and not on the mess of it all. We deserve grace, all of us.

I texted my biological brother, Ted, last night while writing this. Our father has dementia. We talked about whether we should get the genetic testing to see if we carry one of the genes that predicts its potential. I want to. He doesn’t. Does knowing now make any difference later? How will knowing this impact how I live my life today? What does it mean if I know and he doesn’t? How much does environment influence genes?

I think if we stay honest with ourselves, we can handle whatever comes at us. We can stand on the precipice and not flinch. We won’t quit. Our lives are not running away. We will search for the light. Look straight into the future with dignity. No matter what it is.

______________________

END NOTES:

My mom, Pat, who loved me, who did her very very best and who deserved more than she got. And who I will adore always.

I would like to include more of you all in my upcoming essays.

I am working on a piece tentatively about Orgasms and Getting Older. If you would like to weigh in on The State of Your Orgasm, feel free to email me at Kim@FosterEntertainment.net with your orgasm stories, hacks and tips. If they are funny, even better! All gender affiliations and sexualities welcome. All ages as well. Let’s freak out the youngsters. (Mom would’ve been appalled. lol)

Please let me know in your email if you would like to remain anonymous or if you would like me to link to your newsletter. Send me stories, thoughts and experiences by Monday 12pm PST, April 14th.

Thank you, as always, for reading. xo Kim