Living with Dementia – by Poonam Chawla

Ninety years of living reduced to this: the slow counting of breaths followed by the Himalayan trek from bed to bidet to dimly observe the color of pee, the lethargic, sometimes movement of bowels, the hasty swipe with a baby wipe. And here we go again.

She does not know night from day and fears the dark. Abruptly she rises, “I need a bath. Now!” I know that tone. I give in.  She unclothes herself somehow. Suddenly she is afraid. The hand shower is a snake. The soapbox is a rodent. She begins to shake.  I wash off her humiliations and dress her like a child. The skin unpeeling like paint from a wall baring the chipped china of bones; the toothless gums; the sagging memory of her female parts; her tired smells. Please God, take her away.

Now In bed she needs her son. “Where is he?” She is anxious.  “He is watching TV. Do you need another blanket? Do you want the nightlight? Do you want some milk?” I exhaust her with options. Let her believe she has a choice.  She sighs and nods off. I leave the room.

The next day she has another mini stroke, her third this year.  It’s known as TIA (Transient ischemic attack).

Her words come out like toys out of a toy box. Jumbled, disjointed. “Where is my other tomato?” She holds up an old t-shirt. “I need some detergent.” She points to the tea.   Objects are solid shapes with no rhyme or reason. She wants to drink out of a lunch box. Eat out of an ashtray. The News Anchor is a visitor – entering through the doorway of her television. She greets him with aplomb. Asks the new maid (me) peremptorily to bring him a tray.

One day in a moment of clarity and high excitement, she asks for pen and paper. “I know my words don’t make sense. Let me write for you what I mean.”  She holds up her memo for all to read. Squiggles, like ants, run across the page – I nod and nod. She sighs with satisfaction. She wants a cookie for her trouble.

Later she inspects her handiwork again.  Where are the words? She weeps. Enraged she grabs every bit of paper she can find. Tissues, paper towels, napkins, notepads. Every surface is covered with her failed effort.

The alphabet she learnt when she was four is now a foreign language. Surrounded by the fragments of her unruly mind she takes on the look of an animal trapped in the wilderness. She beats her chest and simulates a sob. She can no longer make tears. Her bottomless anguish has nowhere to go. If only we could re-invent ourselves.

A few good days. During Christmas my children come and go. I see her smile and feel reassured. Perhaps she needs more people around her? We invite more family and friends. But when the house empties itself, her mind rebels. She lashes out at her primary care giver. That would be me – the good wife. The upholder of family values. Married to tradition.

I know what you are thinking dear reader. And you may be right. Perhaps we should consider a visiting nurse at $25.00 an hour. Perhaps we should consider a nursing home where she will be looked after by a professional, caring staff. And you may be right. But it is my hand she grasps when the night terrors strike. How can I abandon her?

Today she no longer recognizes me – in her eyes there is suspicion, a hint of paranoia. I’m a woman brought in to entrap her (dear departed) husband. Tomorrow, who knows, her mind will reshape itself like mirrors changing the patterns in a kaleidoscope and all will be well again. I want to be in Paris flirting with croissants. For now I have to cook dinner and breakfast oatmeal – in case she is confused about the hour.

P.S.  Thanks to the good doctors at Jersey Shore Hospital and a spanking new pacemaker her heart rate is strong. She can lower herself on the toilet. She still loves pizza and wants a completely new wardrobe.

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