Notes on my mother, who has Alzheimer's disease

“Oh look,” said my mother in a sing-song voice, pointing wistfully ahead, “it’s the man in the moon. We haven’t seen him in a while, but there he is. He’s so bright tonight, but that’s him.”

We were driving down the street I grew up on and the sun was large and orange and just beginning its trek down toward the horizon. We slowed to a stop at a red light and were squinting in the brightness, and while I have grown used to odd exclamations from my mother, this one struck me as something different, as a magical clue to the dwindling world inside her head.

I turned over her words, puzzling over them and looking at the sun and trying to see what she saw. What a beautiful world, I thought, where the moon is the man in the moon and tonight the moon just happens to be enormous and orange and blindingly bright, and the night sky behind him glows, streaked with pinks and yellows and the occasional dab of blue.

What a majestic world wherein such a thing as that is so exceedingly normal that one might say simply, Oh, there’s the man in the moon. My, isn’t he bright tonight?

***

My mother was diagnosed with Alzheimer’s and dementia about two years ago. It was in the early stages then, and manifested mostly in a confusion about numbers and the Internet and entirely irrational mood swings and paranoia. To me, she merely seemed more unpleasant than usual. My mother had always been prone to irrationality, so when the symptoms first began, they didn’t seem that out of character.

But she was also an exceedingly brilliant woman with a mind comprised of miraculous connections and an understanding of relationships that few historians have. She was highly lauded and extremely well-known in her field, and students still study—and will likely continue to study—her texts and translations, long after she is gone. When the symptoms of Alzheimer’s first began, the most obvious sign of them was that she was no longer able to hide the more damaged parts of herself from her friends and colleagues; that she was no longer able to direct them only at her family and only in private. And so when her friends first began to tell me and my sister that something about our mother was “off,” our initial response was, “Well, yeah.”

This woman looks like my mother. She sounds like my mother. She smells like my mother. There is that visceral feeling when I hug her, that I am hugging the woman I came from, the woman of whom I am a piece, a rib. But each time she opens her mouth, I find that she is just an echo.

The thing is, none of my mother’s “defects” ever made me love her any less. I loved—and love—her fiercely, and while she was often not the best mother, and while she damaged me and hurt me and cost me lots and lots (and lots) of money in therapy bills, I always knew that she loved me into oblivion—into an insane place where only mothers and children are able to exist—and the two of us, both easily dramatic and equally troubled, were tangled in a heated codependency for just about as long as I can remember. I could count on my mother to say terrible things and I could count on her to love me ferociously, and when that is what you’ve grown up with and the way you’ve always been loved, those things are one and the same.

My sister and I have counted on our fingers the ways in which our mother is kinder now, more appreciative, more gentle since the Alzheimer’s.

One morning, I was making breakfast for her in her kitchen (my mother can no longer cook or figure out how to pair or prepare ingredients), and I remembered that neither of us had taken our medications yet that day. I said, “We’ll take them together.” When she asked me why I took medication, my eyebrows drew together and I felt a pang in my heart. “Because I’m bipolar,” I told her uncertainly. “You are?” she asked. “Yes,” I said, so puzzled that this was something she could forget. “You don’t seem like someone who’s bipolar,” she said. I laid out all six of her morning pills in a row beside a glass of water and said wryly, “That’s funny. You used to tell me all the time that I was crazy.” “I did?” she asked. “Yes,” I said, “all the time.” She paused, the look on her face like something you might see from a gentle bird who has just flown into a window and is dazed. “Well, I guess I wasn’t a very good mother,” she said, and softly laughed.

My heart stopped for a beat and then pounded painfully. “Oh yes you were,” I said hugging her to me so that she could not see my tears. “You were an amazing mother.” It was half-lie and half-truth, but it didn’t matter either way. That something as awful as Alzheimer’s could give my mother’s mind enough empty space that she could see herself from outside of herself, for the first time ever in her life, was touching. And it was sad. And even then, an enormous, aching part of me wanted my real mother, who was so often cruel to me, but was my mother—was wholly and truly and utterly my mother—because this woman, while kinder and more gentle, barely was or is.

I can see the Alzheimer’s progressing. My mother forgets words more and more frequently. Words like “ring” and “grapes” and “cats” (she has taken to referring to my cats as “those big things at Becky’s apartment,” which she pairs with a hand gesture that is more suggestive of spider legs or jelly fish than of anything related to a cat). She can barely read at all, and doesn’t remember anything she’s read almost immediately after she has read it, but she does like to sit with a book from time to time. She likes to feel the pages in her hands and she still reads the newspaper every day, albeit all day long because each time it is new.

She still has a vague but passionate sense of the news and politics and loves discussing them; little makes her happier than talking about how awful the Republicans or George Zimmerman are. There is a part of her still attached to the academic side of herself, although she is not aware of it. But she has not even opened the door to her office—the door that leads to walls covered in shelves holding book after book after book, including some of her own, and folders haphazardly splayed across the room full of documents and notes scribbled in foreign languages—in at least a year. Every time I visit her and walk down that hall, I see that door so poignantly, so utterly closed. That part of her mind is simply gone.

One night, my mother fell down the stairs and I ran to her. I held her like a mother holds a child and asked again and again if she was OK. I clutched her to me and rocked her. I felt completely responsible for her and more protective of her than I have ever felt of anyone; just the very idea of her being in pain cut through me. I would do anything to make it better. I would do anything to make my mother better. I would even give her up as my mother if it meant she would be living her life as herself, even if it was without me, even if it was somewhere where I could not see her. I would do anything.

I try to appreciate her for who she is now, to appreciate the gentleness and the unabridged and uncomplicated love she has to offer, but knowing and feeling that I’ve lost her, there are times when I believe I would prefer that she hurl all of that past abuse at me all at once if it meant having her back with me now. If it meant that she would have her brilliant, glorious mind back and that I could look at her again and know that nobody, nobody on this earth knows me better than this woman, that this is the one person who can take all the screaming fights that we can readily invoke—and therefore see the absolute worst that my person has to offer—and will still love me and love me ferociously.

I am accustomed now to having a mother with Alzheimer’s. I am accustomed to not having a mother on whom I can depend, in whom I may confide, with whom I may simply converse. And when I think of how accustomed I am, my heart breaks all over again. It is a constant ebb and flow, a constant healing and breaking again like the ocean.

I feel so much wiser and I feel so much sadder. And it’s lonely.

***

I started this essay in October of 2013. It has now been three years since my mother was first diagnosed, although it feels closer to ten. My mother has lost so much of her vocabulary and short-term memory that a conversation with her is now a couple of oftentimes nonsensical sentences on loop. Her gait is a tiny shuffle and the extreme difficulty with which she rises from sitting comes not from any physical ailment, but from the difficulty her mind has wrapping around even the simple shift in bearing we all take for granted. She lives in an assisted living home now with around-the-clock care, and she is happy with all the safeness and predictability that provides. The worse her illness has gotten, the quieter her once haphazard mind has become, and I can almost see the sense of peace and simple joy that has descended upon her like a cozy blanket or a fresh layer of powdered snow.

It is a blessing of unspeakable depth that my mother is happy. I am so massively, overwhelmingly grateful for this simple truth that I am unable to even think of the words without melting into tears of exhausted relief. I would never have guessed that feeling fortunate could hurt just as much as feeling loss, and could be equal parts awful and sublime. The sheer depth of my gratitude feels almost transcendent to me; if I had been raised differently, I might think that I was feeling God.

As things stand, I was raised by academics. As things stand, I am simply bowled over by the immense beauty that is the heart’s capacity to feel so much: so much pain and so much love and so much anger and gratitude and strength and vulnerability. It is a wonder that we are able to walk about in the world with such a capacity inside of us.

I miss my mother. I will never not miss my mother. I will go months or perhaps—though I cannot imagine this now—years without crying for her and then one day I will cut my finger on a knife in the kitchen, and I may suddenly collapse into disproportionate tears that will be some small, childlike part of my mind echoing back a long ago feeling of a mother’s comforting kiss. I will have children of my own and I will learn that my heart is capable of much more, so much more love and pain and vulnerability than even this experience has taught me. If I have learned one thing from my mother’s disease, it is that the heart has no limit to what it can feel. There is always a deeper love, and always a truer pain. And when I see my mother’s eyes light up at the sight of a simple flower or a chocolate chip cookie, I know that there is always a purer joy as well.

Unlike our minds, unlike our memories, our hearts are infinite.

Rebecca Emily Darling lives in Los Angeles with the ghost of Mary Pickford and two pinstriped cats. In her day life she runs the fancy-pants vintage clothing shop Rococo Vintage on Etsy and teaches/wears leg warmers at Bar Method Los Angeles. In her nightlife she stays home and writes and draws and plays dress up and make believe and basically anything else mature adults do. You can find her on Twitter and Instagram.

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