The holidays are now a distant memory. The carols, the sweets, the time with family are weeks behind us. But for those of us who are dealing with a parent with Alzheimer's, the memory of the recent holiday contrasts sadly with those of previous years when we could count on our parent remembering what we like, what we do and who we are. A friend of mine yesterday spent 35 minutes on the phone with his mother, having the same conversation five times. He is trying to help her, trying to figure out how much support she needs while she vacillates among confusion, anger and moments of clarity. Our Knowing Pains author this week, Regina Sewell, shares the intimate story of her mother, with whom she had a complex relationship even before Alzheimers complicated it further.
Are you supporting a loved one with dementia? I'd love to hear your story. Molly
Through the phone line that connects us, her voice sounds flat, dull. It’s lost the luster and vibrancy that it had only a year ago. Her words come out slurred, as if the effort of talking is exhausting. I called her the day before yesterday to find out how her trip to Savannah, Georgia went, hoping to hear her usual excitement as she relived the trip with me over the phone. She couldn’t remember any of the details. I’d hoped that today would be better, but she can’t even remember that we talked two days ago. My heart feels like it’s imploding. I want to reach back in time, back to the mother that remembered things, back to the mother who loved to travel and tell me every excruciating detail of her trip, back to the mother whose voice sounded vibrant and alive. I don’t ask about Savannah.
Instead, I ask her about the cards she’s making. We talk about the stamps she’s using and how the new brand of pencils she bought are smoother and easier to use. I used to drift into boredom when she talked about making her cards. Now I’m asking questions about the stamps and pencils she’s using. I’m grasping for connection.
We move on to the weather. It’s warm and sunny in San Antonio. It’s cold and rainy in Ohio. We both hate rain and cold weather. She tells me that she wishes I’d move back to Texas. Even in the flatness of her voice, I hear her longing and feel her pull. In this moment, I want nothing more than to go home, to hold her. I tell her that I wish I could go home too.
She starts to tell me about a teaching job she heard about, one that I have a good shot of getting because she knows the person who retired. I try to feel her love when she says this, but I start to panic at the thought of moving back to Texas.
I can’t move back. It would be too painful. I cut her off. I have chosen to live far away from her. The naked truth of this choice hits me like a lead pipe. My inner critic begins to sneer, "Not only are you not normal, you're not even a good enough daughter to move back home to take care of your mother." My guilt sinks to shame.
The feeling rises up my spine and tightens around my throat. I don’t know how to talk to her. I am afraid that she’ll feel bad if I tell her how guilty and ashamed I feel. This leads to even more shame because I realize that I’d rather snap at her than let her see my vulnerability, and sit with her in hers.
I take a deep breath and gather up my courage. Fumbling for words, I apologize for snapping at her. Before she can respond, I admit for the first time that I’m afraid that I’ll be shunned or beaten for being a lesbian if I move back to Texas. We don’t usually talk much about my sexual orientation so this admission feels scary. Tears stream down my cheeks as I talk. I hear myself pleading with her to understand why I can’t move home and to love me anyway. I desperately want her to hear that I’m not rejecting her. And I want reassurance that she doesn’t reject me either. But my desperation feels too raw. She doesn’t say anything. The silence is terrifying.
I want to tell her that I’m afraid of losing her. I want to ask her what it’s like to not remember. But I don’t think that either of us can handle that level of truth, so I say nothing. One of us changes the subject, away from the heart and back to the safety of details. She tells me about the cards she’s made again and that she wishes I were there. I say goodbye, knowing that she probably won’t remember this conversation either.
When I hang up, I’m able to distance myself from my immediate pain and feel the weight of the realization that the mother I knew is gone. I’d seen the signs of her mental deterioration on my last visit home a year before, but I’d denied their significance. We’d gotten lost on the way to the library. When she realized that she had no idea where the library was, she’d slipped into despair. It was like watching someone who’s lost a limb finally realize that their limb is not there anymore, that it’s gone for good. Even though I sensed that her memory was sliding away, I convinced myself that we could fix the problem. Unfortunately, there aren’t prosthetics for your mind or wheelchairs for your memory. When it goes, it’s gone. Not even the Alzheimer’s drugs like Aricept and Namenda can bring back the memory. At best, they forestall some of the symptoms. Stripped of my hope, I don’t remember when I’ve felt so alone.
I only have one friend who understands what I’m going through, and her answering machine tells me, “I’m sorry that I’m not available to take your call right now.” She lives thousands of miles away, so the hug I need would be a bit of a challenge anyway. My other friends simply don’t understand. When I told them that my mother forgot my birthday for the first time last year, they cut me off and wished me a happy birthday. When I tried to explain how significant this was, they said things like, “Well, she is old...”
I don’t share my grief about my mother’s slipping memory because to do so would leave me feeling emotionally naked. I’d be devastated if anyone I confided in misunderstood or dismissed my pain. I’ve never been much of a risk taker, so I mask my tears with laughter. I joke that because my mother’s short term memory is shot, talking to her is like talking to someone who’s high on pot. I turn getting lost into a stand-up routine (in my full-blown Texas accent): “So we’re drivin’ down this road and all the sudden, it just stops, like they ran out of money or somethin’. There aren’t even cows around to ask directions from. So we try to figure out what direction we’re goin’ from the shadows….”
Perhaps this raw vulnerability is why other people who are watching their parents drift off into the fog of dementia and Alzheimer’s don’t really share their pain either. And because they don’t share their experience, we as a culture tend to minimize their pain. It’s much easier to discount someone’s pain than to feel the vulnerability of the human condition. I still remember the sense of indignant frustration I felt with a friend of mine for not setting boundaries with his mother. She called him several times a day to talk about news shows on PBS, and to complain about the particular recordings the local classical music station chose to play. He talked to her at least once a day even when we were on vacation. When she ran out of bananas and we had to come home several days early, I wanted to strangle him. She lived within easy walking distance of two grocery stores, couldn’t she just get her own damned bananas? And even if she couldn’t walk to the store, couldn’t he have a neighbor or a friend drop them off? I’m sure he picked up on my feelings. I didn’t understand then that he was racing against time.
I suppose that on some level, my pain feels too complicated and too raw to express to my friends. To really reach out to them would require me to admit, in public, that for all these years that I’ve supposedly been “grown-up,” I’ve been clinging to the dream that someday, my mother could fix my broken heart. I’d have to acknowledge the fact that there is a part of me that holds on to the belief that someday she will wrap me in her arms like a little child, and all the sorrow and fear that I’ve been carrying around since childhood would ebb away.
I was sexually abused as a child so I’ve always felt like I was somehow dirty, rotten or just plain bad. The only way to be lovable, my child self reasoned, was to say or do the right thing, to find that magic key that would make it possible for my mother to love me unconditionally. Perhaps things would have been different if my mother had protected me from my grandfather, but she didn’t. I don’t think she knew. I don’t think that she could know.
I’d also have to admit that I am still not taking responsibility for my own happiness because I’ve been desperately waiting all my life for her to prove to me that she loves me so that I could, perhaps, love myself. I’ve heard it said that the longest journey is from the head to the heart. For years, I’ve known, with my head, that my mother couldn’t heal my childhood wounds. The silver lining of watching my mother slide into dementia is that in my heart, I finally understand this.
I’m finally taking responsibility for my own healing. Instead of wishing that my mother would heal my childhood wounds, I take time out to visualize my adult self nurturing and comforting that poor mixed up little kid who thinks she’s so unlovable. I’m finally starting to become the mother to myself that I’ve always wanted.
Regina Sewell (43) has a Ph.D. is Sociology and an M.Ed. in Community Counseling. She teaches Sociology at Ohio State University and has a private practice in counseling in Worthington, Ohio. When not working, she can be found dancing to live music, playing guitar with friends and strangers, splashing in the waves of whatever beach she's landed on, and tearing up the asphalt (or at least going as fast as she can peddle) on her Dolci Elite road bike. She is the author of "We're Here! We're Queer! Get Used to Us! Survival Skills for a Hostile World." Her bi-weekly column, "Insight Out," can be found in Columbus Outlook Weekly.