The first time my mother didn’t recognize me, it was thrilling. It was like suddenly going undercover — shedding years of long-held grudges. It was as if the Alzheimer’s dissolved the worst parts of our shared history, and thus, our reasons to argue. When her face indicated she couldn’t summon my name or connection to her, I thought we could suddenly start over.
I could be kind and she could be sweet. If only that brief moment would have lasted without any further complication.
Part I: “je m’en occupe”
I remember the brief time I lived in France several years ago, my favorite phrase in the French language was je m’en occupe. It means “I’ll take care of it,” a rare thing for a French person to say, even for a straightforward commercial transaction like paying for and receiving a service.
They are rare words, in general, for me to hear. Even before she was as ill as she is now, these weren’t words I heard from my mother. I have always longed to be taken care of, but right now, there are many days when I just want to lie down and have a long sleep while someone else says, je m’en occupe and leaves me to forget. I will forget the mother with Alzheimer’s, the children whose needs are so consistent and insistent, and the world at large, which seems to need much care of late.
When I was growing up, my mother seemed to have a constant well of sadness and anger to draw upon. Whether it was really about leaving the country of her birth at age 23, or working all sorts of menial jobs, or the English language she never gained full confidence in speaking, or whether it was because she felt her husband and children consistently ignored her advice and always seemed to have minds of their own, I will never know.
Do we all walk around with some kind of default setting in our brain that can be tweaked, or altered to stand as bulwarks against whatever other processes take over our minds as we age? I look at the situation and acknowledge that my mother has long suffered from undiagnosed depression and wonder if any treatment or acknowledgment of the condition before now would have made what we are dealing with today any less unpleasant. I wonder if there had been some way to treat her depression — either through therapy or through drugs — that would have altered her serotonin receptors and kept her Alzheimer’s from manifesting with so much rage now.
My mother’s rage spills out when she does not understand how the shower works, when she asks me to help her turn it on but then insists that I stand inside the shower, fully dressed, not outside as I turn the handles. There’s the look on her face that says she remembers every single time I ever ignored her advice or disobeyed her. From the summer I dumped a bottle of Sun-In on my hair and turned my whole head orange as a pre-teen to the subsequent piercings (third earring, navel, and nose, respectively) I had done at various stages of my life, all without her blessing.
I try to explain that what I am doing will, in fact, make the water come out, even if I am not standing directly underneath the shower head.
I tap into reserves of my own patience that will be exhausted by the time I have spent more than a few days with her. I tap into our entire history as well. But I still feel unmothered, unmoored.
Part II: Her Memories
“Mom, I saw a video the other day about a woman who can’t forget anything at all.” My daughter tells me this on the way to her gymnastics class, about how no detail is too insignificant to be warehoused in the woman’s memory and how she suffers headaches. I find myself wondering if the erasure of all of one’s memories is some relief then.
Is it possible that in my mother’s mind, she dwells in the world of her childhood without realizing that it has been lost? Certainly, there are moments in which it is clear she does not understand that her own mother or father have died. But that obliviousness carries alongside it bewilderment at their current absence in her day-to-day. For, if they are still alive somewhere, why aren’t they with her? She has been abandoned. Alzheimer’s, then, is not the antidote to the woman who never forgets.
My mother does not suffer from a complete erasure of her memories, but rather, they fire off unpredictably. She will recall an incident from decades ago and there’s no way to stem the rage she feels at it. She shares the longest history with him, and so my father is her most common target.
I look at their marriage now and am undone by the way it is distilled to my mother’s rehashing of years past. It’s as if the transgressions had occurred yesterday. I’m similarly devastated by my father’s animal loyalty, no matter her treatment of him.
Asking myself: What’s next?
My mother still lives at home with my father in Florida. I, in turn, nervously check in with my father regularly from where I live in New York. I worry about how unsustainable the current arrangement is and worry about my father’s health as full-time caretaker. He is 81 years old.
I run numbers and calculations regarding the cost of a long-term care facility, I look at real estate in Miami and wonder if I could move there and have my father live with me. How much could we increase the financial budget to provide for my mother’s care through such consolidation?
And yet I know we cannot do this. Such a move would severely impact my husband and children. It would involve asking my father to surrender his privacy, the main reason, besides the cost, that he has not hired a full-time healthcare aide. It would involve even less time for me to work as I took on managing the day-to-day aspects of my parents’ lives.
Part III: Anger
I know now that no one who shows their anger is angry about just one thing. The “one thing” sets off the tide of pinned up anxiety and frustration that was lying under the surface. Like the way I snapped at my daughter when she started arguing with my son, her brother, over some petty slight shortly after our conversation about the woman who never forgets. There is nothing novel about siblings arguing. But from the woman with the prodigious, and tormented, memory, I leapt to thinking about my parents and the calls I have to make and the grief about all of it that has been welling up within me. To have my children interrupt that mental trajectory with their screeching was, as they say, the straw that broke the camel’s back.
But now I am the woman in the video, my flawless memory recalling arguments we had when I was an adolescent, arguments that were, in many ways, about the same things that many teenage girls argue about with their parents — boyfriends, how I dressed, where I went with my friends — but that were also about my mother, specifically. How she imagined I did things as a rejection of her. This is the screen behind which she saw everything.
It continued well into my adult life, from her voicing loud and unfiltered criticism over my decision to go back to graduate school at almost 30, to put off childbearing even though I was married, to choose to breastfeed when I finally did have a child. All of her biting words came from behind the heavy fog of not feeling good enough about herself. My independence inflicted a wound in her.
Therapy and moving forward
I didn’t see it this way until I had a daughter myself. This was several years ago now, when I went to a therapist, in part, not to repeat the mother-daughter patterns I was afraid were deeply ingrained in me. I came out realizing that there was more going on with my mother at the time, who was then in her mid-sixties. She was still living under 100 miles from me and I saw her frequently. The interactions and behaviors I described to my therapist, however, sounded “off,” something more than typical parent-child patterns.
My therapist suspected the encroach of dementia, and was not surprised to hear that my mother’s grandmother had Alzheimer’s. I never met my grandmother, her story being part of everything that had happened before my family came to the United States. She lived at home with my mother and the rest of their family in Havana until the end.
I think about how the experience may have impacted my mother; for years, she resisted going to a specialist when it seemed like her brain was misfiring. So much more had to happen, including repeated visits from the firemen to my parents’ home after she forgot about appliances she had turned on, until my mother was finally diagnosed. This was almost seven years after my therapist’s initial suspicions.
The diagnosis gives us a framework for moving forward, but leaves me, in so many ways, with less. I will never learn any of the things about my mother’s family or her upbringing that I didn’t ask before. My mother’s exile highlighted an emerging black hole of medical records, records of births and deaths, and so many of the other physical markers that define family histories. Her dementia represents a complete void of even anecdotal accounts regarding my own ancestry. I will not resolve my differences with my mother or gain insight into her world or our relationship. How could things have played out if either of us sought therapy earlier in life. The past feels sealed off. I can only move forward.
Part IV: Caregiving
There are nights when my son tries to wait for me before going to bed, but has to accept a story from his older sister. He starts nodding off before I can free myself of all of the obligations that come with the diagnosis and long-distance caregiving.
For everything I say “yes” to, there is a corresponding “no.”
I think about the behavior that I am modeling for my children, the tenderness I outwardly display in equal amounts to the frustration that I share with them. The ways in which I want them to know that it is okay to feel sad, overwhelmed, and to confront those emotions. But this is an ongoing project, this struggle of mine to be prove myself both “capable” and “real” about life’s struggles.
My pre-adolescent daughter often thinks I take on too much, am too quick to say “yes” to things I have no time for. I’m sure that my pseudo-management of this situation with my parents bolsters that belief.
She can tell that I am more worried about my father’s state of mind than my mother’s. That I panic if he isn’t getting enough sleep or rest when we are together, those times when I am, allegedly, relieving him of the burden of caring for my mother alone.
My daughter hears my whispered telephone conversations with my siblings about how my father manages all of this when none of us are there: my mother’s violent mood swings, her erratic demands, the ungodly hours at which she wakes, when it is still dark outside, because she has no notion of time anymore.
I recall my own children’s “witching hours” when they were small and how prone they were to tantrums as a result of hunger, tiredness, or overstimulation. And then I think about how much of my parenting in a big city like New York ends up being public. Every crying jag is on display, for all on subways and sidewalks to see. How unnerving those temper tantrums are precisely because they are happening in front of people I do not know.
I think about the moments my children are witnessing and how they will shape, not just their perceptions of me, but also who they will be in years to come. Will they show compassion in the face of illness? Will they be kind to themselves and their own limitations?
But it is now my mother’s temper tantrums that parade before them my entire emotional history. These are the deep, well-hidden parts of me coming out now. My children are an attentive audience for all the slights and imperfections my mother complains about.
What I have realized now is that my mother’s condition has not pushed me to be a better and bigger person, but rather, a smaller and meaner one who has let the tension of this one aspect of my life affect my relationships with my children, my spouse, and even my ability to focus on and complete my own work. Starting over with my mother is like having another toddler in the family, someone with no emotional maturity and little ability to care for herself.
The reality of that is mentally exhausting.In my attempt to understand patterns and impose order on this universe reigned over by my mother, I feel the weight of my responsibility not just toward my mother, but toward my father, my children, and even my husband and siblings. And yet I find myself saying, over and over, je m’en occupe. I’ll take care of it.