Becoming My Mother's Keeper: A Journey Into Alzheimer'sBy Rachel Darden Bennett
May 27, 2013
As she's gradually changing roles with her mother, Rachel Darden Bennett is trying to maintain a connection with her mother's beautiful spirit.
I got a call from the head nurse of the memory care unit telling me my mother was punched today.
I feel my stomach tighten. It’s the feeling you get when the person you love the most is hurt and you can do nothing; when you realize you are helpless and fall prey to the inevitability of a disease that takes no prisoners.
Alzheimer’s is a complicated beast, and even more so, the communal living situation for people with dementia. Two months ago I agreed to move my mother downstairs to the “Country Cottage”—the area for people with mid to late stages dementia. Since then, there have been more phone calls. More problems.
When the 732 number appears on my phone, my breath shortens. This time, I’m on my way to teach yoga to a client in Park Slope.
“Hello?” I answer.
“Hi, Rachel, this is Lindsay at Forsgate. We just want you to know that your mother pulled her diaper down in the middle of the activities room and shit on the floor twice this week. We want to keep you informed.”
What do I say to this? More vitally, what do I do with the feelings inside that swirl and kick and feel like they are cutting me? Feelings that have nowhere to go? That must be held as I tell the nurse, “I’m sorry. I’m glad you told me,” and keep walking down the sidewalk to arrive at my client's house on time, taking her through a round of sun salutations, hoping to appear serene and calm?
I feel guilt and shame for my mother (and for me? For am I not an extension of my mother?).
Confusing and contradicting feelings consume me long after I’ve hung up. Tears fill my eyes and I become livid at myself. Why did I apologize for my mother? She did nothing wrong. It’s not her fault. Her brain is sick. She didn’t know where she was when she went to the bathroom, as is so often the case when she looks at my with large, round, saucer-like eyes and asks me, “Where am I, Rachel?” She couldn’t help it. Why, as much as I wish I could care for my mother, I simply could never do it alone as a single, 30-something, yoga teacher/actress.
A week later, another call:
“Hi Rachel, It’s Jenny, the nurse at Forsgate. Your mother fell down again this morning. We found her on the floor and sent her to the emergency room for X-rays .She seems to be doing fine and there is no concussion. We just need you to be notified.”
Rage again spreads through my body like a poison because I can’t help my mother. I’m also angry at her for abandoning me.
Slowly, undeniably, she is leaving me by means of a long and painful exit.
I’m reminded of this most of all on Mother’s Day. Walking through the city a few weeks ago, I passed by mothers and daughters drinking mimosa’s at outdoor cafes and walking down the street, shopping bags in their hands.
The ease in which they chatted and laughed and walked.
The ease in which the mothers remembered what their daughters just said.
This year, however, I decided not to lament. I am not a victim and nor is my mother. This is our situation and we are living it. The switch in my mentality derives much in part from the advice my mother gives me from this different expression of who she is.
Sometimes she looks at me as if she can see inside of me. She is so un-armored. Pure. She has no angle anymore, nothing to cover up, hide, or promote.
“Rachel, be true to yourself and love God. That’s all you have to do. The rest don’t mean a rat’s ass.” She tells me.
“But, Mom. There are so many questions. Should I give up acting? Will I have a baby? I’m getting older...“
“Rachel, you worry too much. Lighten up. Have some fun. Most of all, take what you want in life. That’s what I wish I’d done differently. I wish I hadn’t worried and planned so much. I wish I’d lived more and not worked so hard. I wish I’d trusted.”
As she utters these words, she is stooped over, the Alzheimer’s having taken her peripheral vision completely, but she says it with enough chutzpah to make me laugh and believe her.
Then she looks up, terrified, “What is that? It’s huge! It’s coming at me!” she screams.
“It’s a lamp, Mom. It’s just a lamp.”
“Oh.” She says, suddenly sullen.
I try to live my life, too, but there are difficult moments, like the phone call this morning.
“Who punched her?” I ask the nurse, trying to keep my voice calm.
“Well, she gave me five different stories. First she told me that a resident called her fat and a laptop computer and...“
“A laptop?” I ask.
“That’s what your mother said. A laptop. And then she told me that the woman punched her. Next, she told me that she hit her hand on her walker. Then she told me she hit her hand on the bathroom door. So we really don’t know.”
“And we won’t know. There isn’t a camera,” I say, praying that my mother just hit her hand on the bathroom door. Praying that it wasn’t a fellow resident, or worse, an aide or nurse.
“The bruise is about the size of a quarter on the top of her left hand, Rachel, so I find it highly unlikely she was punched. If someone did punch her, they would strike her arm most likely."
“You would think, but you don’t know,” I say, beginning to understand the importance of elder care attorneys and even more, to realize that this is a land I don’t know how to navigate, nor will I ever be given a map to do so.
“I appreciate you telling me. If you hear of anything that helps you understand what happened, please let me know.”
I call my mother right away.
“Mom, did anything happen to you yesterday that I should know about?” I ask her, trying to see if she remembers.
“Yes. A lady punched me. I didn’t tell you because I didn’t want to worry you,” she tells me.
On a recent visit, I arrived to find my Mom in the activities room, surrounded by tissues. It’s her new obsession. She can’t get enough of them. They stream out of her purse, her pants, fall out of the collar of her red and black striped shirt and lay strewn around her feet like flower petals.
At dinner, I guide my mother slowly to her table and sit down next to her, and her two table companions; Audrey, who speaks gibberish and looks like an elf, and a man who combs his hair repeatedly and speaks only German.
Ions and galaxies away from New York City and “normal,” I look at my Mama. She is fragile now, utterly luminous and so fucking infuriating, I am filled with the non-cerebral, visceral, understanding that we are here, now. Alive, together. Changing roles. Roles have changed. There are no more “shoulds.” “Shoulds” don’t exist with Alzheimer’s.
She asks me for another tissue when she already has three in her hand, and I realize I’m so lucky to have her. She is my guru. My warrior. My teacher to be patient and love not just when it’s convenient, but to love from the depths I didn’t know I had. As Audrey speaks in foreign tongues and the man combs his hair again, my mother’s imperfection reminds me of her perfection that always lies beneath the dying neurons, nosebleeds, and bruises. Her spirit.
My mother told me growing up that everybody is always doing the best they can; that amidst the pain, inequality, and fear, there are gifts to be received all the time, if we are really looking. People give what they have to share. People give what they know.
In addition to writing, Rachel Darden Bennett is an actor, dancer and yoga teacher living in Washington Heights, New York City. She is a graduate of Hunter College with degrees in dance and writing, the William Esper two-year acting program and Oxford University Creative Writing summer school. Her work has appeared in The Rumpus, New York Press, Reality Sandwich and Yoga Modern. You can visit her website www.racheldardenbennett.com to read her work and watch her film clips.
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