by Ellie Dias
It was once a house once so spotless you could eat off the floors. Now, there was a coating of dust on every flat surface, thick enough to scrawl your initials everywhere. The bathroom, formerly sparkling with the fresh scent of Pine, emits an odor as alarming as the urine-splattered toilet seat. Instead of the smell of freshly folded laundry, piles of dirty clothes molder next to the washer. A stainless steel sink that used to glisten holds stacks of weeks-old dishes.
An intruder stealthy in its approach has entered, slowly casting its shadow over us all.
She is 85. We insist she hire a cleaning lady. She is adamant she is capable of doing everything on her own. Reluctantly we, my brother and I, let go. Over the next few weeks the house looks a lot cleaner. Relieved, we go about our busy lives. She must be back to her old self.
A 10 p.m. phone call. My mother is ringing. “Is it 10 o’clock yet? I need to go to the dentist!”
“It’s 10 o’clock Mom, 10 o’clock at night. Can’t you see it’s dark out?”
A nervous laugh. “Oh, of course. My memory is getting so bad lately.”
Hanging up, I convince myself it’s all part of the aging process. Old people always mix things up, no need to worry, I tell myself.
Another phone call. This time, Mom’s older sister. She speaks the words that make the situation clear. Suddenly the intruder steps out of hiding and rears its ugly head.
“Ellie, your mother is at our house. She’s safe.”
My heart races. “What the hell does that mean?” I burst out.
“Your mother came to pick me up for our 9:00 a.m. hairdresser appointments. It’s almost 9:00 p.m.!” She quickly adds: “This is not the first time.” Stunned, I hesitate before asking if there’s anything else I should know. An awkward pause.
“She was in a car accident a while back and sometimes she gets lost when we go places.”
A chill runs up my spine. The puzzle pieces fit perfectly now, they add up: confusion, forgetfulness, neglect. Alzheimer’s. The intruder has a name. I need advice.
I decide to take a six-class course at our local Alzheimer’s Chapter. I amass a binder full of information. With my newfound knowledge about the disease I’m confident I’ll be able to handle any situation. But I quickly learn this intruder is always a step or two ahead of me.
I purchase a medical alert bracelet engraved with my mother’s name, her condition, and my name as the emergency contact. I can’t wait to put it on her wrist and she can’t wait to keep removing it. I find it tucked into chair cushions, stuck inside books and magazines, under furniture, everywhere but on her wrist. I am told to put it on her non-dominant hand so she has to struggle to get it off. I try this myself and my brother has to remove it. This should work like a charm.
Like Houdini, she removes the bracelet quicker than it takes me to put it on her. Determined to make it work, I have a “hard to remove” clasp put on. I watch as she slips it off with the dexterity and nimbleness of a concert pianist. Me: defeated and angry. Why can’t that tangled mess of neurons be more selective in its assault?
I know it’s no longer safe for my mother to be behind the wheel of a car, but how on earth am I going to stop this independent woman from driving? How will I even go about taking away the keys? And what will be the ramifications if I’m actually successful? She lives alone. How will she get anywhere? My brother and I both work full-time and have our own family obligations. I sit down on a couch, my mind racing.
The next day my husband and I concoct a story that her car needs to be serviced. She’s concerned about how she’ll manage with no means of transportation. I don’t have the courage to tell her the car is never coming back. I assure her I’ll happily take her wherever she needs to go. But I’m not happy.
It hits me what a massive undertaking this is going to be with ongoing trips to the hairdresser, doctor and dentist appointments, the grocery store, the mall and whatever else she needs or wants to do. Besides becoming her chauffeur, there will come a time when her bills will need paying and her house and yard taken care of. Most of all, the need to keep her safe as the disease progresses. I am clueless.
Anxiety takes up permanent residence in the pit of my stomach. How are all her needs are going to be met? I do not want to be accountable on a daily basis for anyone, not even this woman I dearly love who devoted her entire life to my brother and me. Now that both my children are out of the house and settling into their own lives, this is supposed to be my time to go about my life unencumbered by someone else’s needs. Not wanting any part of it leaves me feeling tremendous shame and guilt.
In the days ahead I try to comprehend what this elderly woman—my mother—is experiencing. What is it like to have a mind go blank, devoid of all thought? Is there panic when her memory returns, if at all? Does she wonder where she disappeared to? Does she feel embarrassed or fearful when she returns to the land of the living?
I cannot fathom it. Knowing how this disease gets progressively worse is more than my mind and heart can handle at times. I worry about her poor eating habits to the point that I lose my own appetite. I fret over the dilemma of her taking her medications. Some days she’ll take them all. Some days she’ll take just a few and other days none at all. Maybe she’s even doubling up on them. Who knows?
I buy pill containers, fill them every Sunday hoping that the days of the week will keep her on track with what to take and when. It doesn’t last a week. I find some slots empty and some still full. I find some pills on the floor, others tucked away behind the pillows with candy bar wrappers.
I drive myself crazy about her hygiene. I know she’s stopped taking baths: the bar of soap on the bathroom sink and the one in the holder by the tub never get smaller. She’s stopped brushing her teeth: her toothbrush is bone-dry, the tube of toothpaste still intact.
I become a regular Colombo when I go to the house, constantly searching and poking around. Looking for those dreaded signs. The worst is finding the badly soiled underwear or the occasional piece of feces on the floor by the toilet seat. It breaks my heart watching that damned intruder getting stronger as it destroys bits and pieces of my mother. I am at my wits’ end and then I finally get it. I cannot fix what has become an impossible situation. I feel as lost and powerless as she must feel.
Months later my mother transitions from her home to assisted living in an Alzheimer’s unit. I find myself transitioning as well—less daughter, more caregiver. I am her eyes, her ears and, more important, her voice—all while fighting every battle, from dirty fingernails to misdiagnosed pain.
Now 95, she’s still going strong physically. Mentally she’s somewhere else. She no longer recognizes me and hardly speaks. Each visit takes an emotional toll on me and tears at my heart. There are many days I would rather not go because it’s a reminder of the vibrant active woman she once was and what both she and I have lost. But I go to honor this woman who brought me into this world, who protected me, comforted me, and stood by me in times of heartache and joy.
I take the hands that once held me, cover them with mine and close my eyes. I feel their warmth against my own and I can sense the truth of who she is—a spirit whole and strong and beautiful as we wait for her final transition. I squeeze her hands to let her know it’s my turn to protect and comfort. On a good day she squeezes back.
©2014 Ellie Dias
A professor of human sciences, Ellie Dias has devoted herself to Buddhist philosophy, and yoga. She merges an expertise of the human body with meditation, incorporating both in her classroom. She founded a women’s spirituality group, and continues to work nonstop on taming her Western materialistic nature. Ellie's first book: Big Red: How a 95 Pound Suitcase Taught Me Simplicity will be published by Buddhapuss Ink in September 2015.
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