Dementia is a thief that steals from us all
I can't stop dementia from taking my mother away from me and I grieve for what she has lost. But in being banished from her memory I also fear the erasure of me.
She is not herself. She has not been herself for a long time. But this past week the change in my mother is a gut punch.
For the past eight months, as I approach her napping in her bed at the memory care facility, I am holding my breath, afraid of my erasure from her memory. But each time, she has opened her eyes and greeted me with a big smile and said my name, happy to see me. The relief is exquisite. Not yet, I think. She has not been stolen from me yet.
This week is different. She opens her eyes briefly. There is no smile. “Amy,” she says. “I wish they had told you. I don’t want…I don’t want….” She closes her eyes again.
“I brought you some treats,” I say. “Would you like a sugar cookie?” She has not been eating well. She is fighting an infection. I come bearing chicken soup, a cranberry-orange muffin, the big, soft cookie.
She shakes her head. “No…please. I’m not up for it.”
“That’s okay, Mom, I just want to visit with you. I love you.” I stroke her thick hair. I notice she needs a haircut, make a mental note to book a time with the visiting stylist.
She sighs with irritation. “I know, Amy.” She pulls the blanket up to her neck and burrows her head into the mattress. “I don’t know why everyone can’t leave me alone.”
I swallow hard. This is not the mother I know. The woman of the kind words, polite and diplomatic to a fault, who seldom shows annoyance. The mom who says “I love you, too.” I tell myself she is not feeling well. She’s on a pain medication that makes her extra drowsy. She needs her sleep. I put the sugar cookie near the bed where she can reach it when she wakes up, and I leave.
As I drive home, fighting back the tears, I realize that the thumping of my heart is telling me something I need to face. I fear not only being banished from her memory. I fear the erasure of me. Who are we when our parents no longer recognize us?
Caring for a loved one with dementia is a constant dance between hope and despair, whether they are in a memory care facility or they live at home with with a family caregiver, as I was for almost a year until it nearly broke me, as I wrote about last year.
The days when your loved one is in a good mood, delighted to see you, sharing snippets of memories that you cling to as signs that it’s not time yet. Mom is still mom—for now. And then there are the days when they are anxious or irritated, will not eat, only want to sleep. The days when they beg you to leave them alone.
When I returned from a month away, I was startled to see her. My already tiny mother had lost more weight. I knew from my regular conversations with her hospice nurses and my sister that the venous ulcer on her leg was infected and painful but fortunately is on the mend. This is temporary, I told myself. She’s not herself because she doesn’t feel well.
Yet I also forced myself to have the conversation with her hospice nurse about whether any of her current behaviors could indicate she was advancing into a more serious phase of her vascular dementia—what the nurse gently referred to as the end stage, “transitioning.” The nurse was kind but could not give me a definitive answer.
The truth is, no one can. Dementia is not only a thief, it’s a very unpredictable one. You can easily find information about the stages of dementia as
helpfully describes in her excellent resource . And yet placing my mother within them is not an exact science. Because of those good days and bad days. Because of our hope. Because the human spirit can surprise us.There is frustratingly little I can do to prevent dementia’s relentless march. But I can take steps to prepare myself for what is to come. I can reach out to other caregivers and their wisdom, like
who writes and offers a rich set of resources and recommendations for caregivers, including this compendium, “Resonance for Caregivers: A Network of Empathy.”I take solace in the beautiful, empathetic writing of others here on Substack whose parents have dementia, like
in who in this essay reflects on “the unknowability of everyone we love” as she spends time with her dad who has dementia.Courtney writes:
I am so often so unsure of what those I love are thinking, seeing, forgetting, remembering. That doesn’t mean they’re disappearing. It means they’re only partially perceptible to me. Maybe people with dementia are unknowable, but not all that much more unknowable than every other person we love
As I make peace with the unknowability of Mom’s journey and my own in the weeks and months to come, I can continue to do my own inner work. I can confront my fears about erasure, identity, grief and loss. I can look at the guilt and the shame still casting its shadow over my decision to move her to memory care and for spending a month away from her. I can—and must— learn to parent my frightened inner child. Mom can no longer do that for me. These days I do that for her. I tell her over and over again, “I love you.”
And this, in the end, is the only truth, the one that cannot be erased. I am my mother’s daughter because of the love. It is the one thing that dementia cannot steal from me.
P.S. Today, two days after that Saturday visit when she only wanted to be left in peace, Mom sat in her wheelchair at the dining table, her chicken noodle soup mostly untouched, but she lifts her head for a couple of brief smiles.
“I’ll definitely be back this Friday April 12. You know what day that is?” I ask.
She looks down at her lap, silent. I lean closer, stroke her hand. “It’s my birthday.”
She smiles again. “I should remember that,” she says.
“I will bring cake for both of us,” I tell her. “We will celebrate together.”
And there it is again: the love that vanquishes the fear and the worry. It invites me to be present, in this moment, with my mother, and I thank love for the reminder.
Question for the comments: Are you experiencing dementia with a loved one or are a caregiver? If it is a parent with dementia, do you also experience that sense of identity loss as the child becomes the parent? What practices help you to keep your head above water in your darker moments? Please share so we can collectively support each other.
Three Songs for 3-D
Divorce
“Give Me One Reason,” Tracy Chapman
I don't want no one to squeeze me/They might take away my life
Dementia
“Lift Me Up,” Rhianna
This beautiful ballad is like a lullaby. I imagine Mom and I singing it to each other.
Hold me when you go to sleep
Keep me safe
We need light, we need love
Destiny
“The River,” Coco Love Alcorn
The river is a leader
Every single day
It's living in the moment
And it always finds a way
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