She is like a puppet on a string, my Mother.
“It’s time to wake up, Ma.” Even as she lies blissfully asleep, comfortable, free of pain or sorrow. But her diapers are soaked and there’s the smell of something messier. We can’t leave her lying like that. And with that, the morning begins.
We’ve learned to roll her, truly, roll her. With a pad under her we pull to one end and then the other, until we have her on her side, and then seated upright. It is a team effort, my sister and I, for she is dead weight. As she comes to, she looks about bewildered, her hair all wild around her, her eyes bleary and blinded by the light.
“Drink this, Ma.” We place a cold glass of juice in front of her. She won’t drink water, so we’ve given up that fight and do juice laced with Pedialyte. “Take a drink,” we say again. The blessings of dementia are that she doesn’t recall she drank it just two minutes ago.
I stand in front of her so we can get her to rise up and walk to the bathroom. One, two, three, up we go. She totters there, then catches her balance. Sometimes I just hold her in my arms for a moment, until she steadies, and then away to the toilet we waddle.
We release the PJ bottoms first to minimize what will need to be cleaned up later. Then strategically placing her so she can sit, and we can lower the landmine, all at the same time. Whoosh, down it goes.
Stand up, sit down, stand up, sit down, as we sponge her down, dry her off, brush her hair, her teeth, then dress her for the day. She likes the warm washcloth on her face, pushes her cheek into it like a cat.
Finally, she is clean and changed, the first milestone of the day complete. Then off to the kitchen for breakfast.
Once upon a time, meals were a time of pleasure and enjoyment. Now, they are pushing the boulder up the mountain. Once upon a time they were about nutrition and putting good things in our bodies, now they are simply about calories. My mama is a teetering melon on two sticks.
It is a game or a chore, depending on the mood. We put food in front of her, and she’ll look at it puzzled, ‘what am I supposed to do with this?’ Then make a face, shake her head no, wave her hand. Away, take that away. It’s almost all facial expressions and gestures these days. Very few words.
Sometimes the games work. One bite for me, one bite for her. Or I’ll steal a bite from her plate and watch her get all fussy and give me a, “Hey what are you doing?” look, then welcome a bite for herself. We laugh at the success and relief of another bite.
They recommend smoothies. But she doesn’t really like them. Not the ones I make, nor the ones we buy for $8 from Whole Foods. She doesn’t like Ensure or even the better tasting Haagen Dazs. My sister and I have gained weight from all the leftovers we finish on her behalf.
So, mealtimes, too, have become a chore. “Eat Mama, please eat. Open wide.” Like she’s five years old as we slip a morsel into her mouth. Sometimes I get so frustrated. “You take it, Ma. You hold your own fork, your own cup.”
Then to the living room, where we put her feet up on the ottoman, prop pillows on either side to keep her upright. Sometimes when I come back in, she’s slipped down the chair, and lies there, unmoving, suspended like a bridge.
The most recent advice we’ve received is we’re not supposed to let her nap in the afternoon as it exacerbates what they call the sundowner effect. As the name suggests, it is the time of the day when she becomes more confused, slips even further away.
But I think it maybe is a magical time, when the veil between worlds is thinner, and in fact on those days when she seems so far away, she is, in actuality, already in that other world. And this is why she looks back at us not understanding what we are talking about. She is confused at the body that is hers, but no longer moves at her direction. At the thoughts that flit about like butterflies and are so hard to hold onto.
And so, we push and prod and schedule and maneuver to keep her away from that portal. For a while, if we try very hard, we can keep her from stepping over and never returning.
But the call is strong, the riptide of her life seeking freedom is so very strong.
At last it is time for bed, and the relief (for all of us) that she slips back into the escape of sleep. One roll, then another, and over she goes onto her side. Asleep almost immediately.
And for tonight at least, we lay the strings down next to her and turn off the lights.