We are losing her faster than we ever imagined.
Day by day, she disappears a little bit more.
My mother is becoming a ghost.
The metaphor extends in a multitude of directions.
She is just a shadow of her former self now. She is terribly thin, much weaker than she’s ever been. When she is awake she is driven, somehow, internally, to putter about the house all day. She shuffles from room to room, anywhere from twelve to fourteen hours a day.
She is BUSY. She burns calories. She moves things from room to room. She pulls the kitchen towels from where they hang, folds them into knots, stuffs them into shoes. She rinses the dirty dishes in cold water, stacking them soaking wet on the counter, then wanders away, leaving the faucet running. She pulls trousers and vests from her closet, carries them to the pantry, and tucks them amongst the Cheerios and the extra bag of potato chips.
She cannot rest.
She cannot relax.
But she also cannot eat. She forgets to eat, and even if she remembered, she would have no way of figuring out how to feed herself. We try to feed her four small, high-calorie meals a day, but we never really can tell what she’s willing to eat that day. A PB&J might have been her favorite on a Tuesday, but on the Wednesday she’ll hide it in the newspaper recycling to avoid it.
Interestingly – having temporarily divorced oneself from the emotion of it – we have to feed her to get her to eat. We can’t place food in front of her, because she cannot see it. She’s not blind. But the neurons that take the images from her retinas and interpret them into thoughts, and then to action, have broken down. She can’t process what she sees, and so is effectively sightless.
It’s the same with words. “Here’s some yogurt, mom,” doesn’t mean anything anymore. It’s just noise rumbling about in a world that is nothing but fog and terror.
BUT. If I take a spoonful of the yogurt and put it in her mouth, it jump-starts the system. She suddenly remembers how to eat. She remembers the mechanics. She just didn’t know it was an option until THAT VERY MOMENT. And then she takes the spoon and eats the whole thing herself.
It’s still not enough, though. And all the high-fat jello pudding, Boost, full-fat yogurt, and extra butter on the Eggo waffles isn’t enough to meet the caloric demand her Alzheimer’s exacts on her.
She is smaller than I have ever known her to be in my life.
In the most literal sense, my mother is becoming a ghost because she is dying in front of us.
Her body is weaker, more frail. She rolled out of bed in the middle of the night about a week ago. Dad was out of town and I was sleeping in the next room over, and the THUNK-CRASH at 1 a.m. had me racing out of bed to her room.
There she was, sound asleep. On the floor. She’d hit the nightstand on the way down, and by the following morning she had a terrible bruise on her shoulder. And yet her body is so exhausted, so taxed, she slept right through it.
We’d already taken the bed off the frame, so that the boxspring and mattress sit directly on the floor, but the following day I got rid of the nightstand and lamp, and put a padded mat on the floor next to her side of the bed.
We call it her landing pad.
Or her crash pad.
She is profoundly kyphotic, her shoulders hunched forward, her head now looking perpetually down at the floor. She has lost all the muscle tone in her back, and can no longer stand upright. When I want to look her in eye, I have to crouch down and look up.
She has to tilt her head up to eat, to drink, and it gives my nurse-self the heebies because it’s just a matter of time before her swallowing is permanently impaired by her posture.
I mean, it’s a matter of time regardless, for all of it. But with so little time left to us, anything messing with the clock seems appallingly unfair.
She needs help to shower, to use the toilet, to get dressed, to take her pills, to brush her teeth (luckily still another intact motor memory, though flossing is long gone). Her walk is now just a shuffle. The mother that I walked for an hour with in the early spring of this year has been replaced with one that can barely make it around the block.
I live with the terror that she will die in her sleep one of these nights, and then I live with the nauseating guilt of wondering if that might be the most merciful outcome of all.
And, of course, what is a ghost but the memory of someone we have loved and lost?
My mother is gone. But my mother is here.
But most of the time she doesn’t remember me. I don’t seem to bother her, this strange woman who hovers around, trying to encourage her to eat. But I’m not her daughter.
Every once in a while she calls out, “Martha?” And I call back, immediately, “I’m here, Mom.” But she can’t process the words she hears, and within a moment the thought that called to me is gone, and the wandering continues.
She frets over my brothers – but not my brothers as they are now, adults with lives and families long separated from her. She worries over her babies, her little boys.
She knows my dad. But her memory of him is different. She knows his name is Robert. But I don’t know if she equates “Robert” with “husband.”
Instead, she knows him. He sits in his recliner in the corner of the living room, reading a book. She wanders over to him, and will reach out her hand. And he puts the book down and takes her hand, and helps her turn and sit down, and she sits across his lap in the big overstuffed chair.
And then she sighs, and rests her head on his shoulder, and he rubs her back. And she closes her eyes.
And finally, finally, for however long it lasts, my poor ghost of a mother feels safe enough to rest in peace.
Sending prayers for you and your family. Thankfully it seems from your writing that she is not physically in pain.
This terrifies the me that I see could be me, the me I dread. Yet, you and your father are the nest which shelters her and all the magical things she does to “feather” that nest. Warm thoughts and kudos for you the daughter, the nurse, and the writer.
Gail B Gall 617-283-3782
Oh. Bless you all.
your writing is so beautiful and the content is so gutting. thank you for this. my father is starting on the same path.
In all of my years of reading and study, the abstract has never sprung so brutally clear: the best writing comes at moments of great pain as well as great joy. With some of your most beautiful writing at the highest possible cost, I hope that many more moments of joy are in store for you, Martha. Keep going, keep writing.
Thank you for your post. Well written. Am so sorry.