It was once a house so spotless you could eat off the floors. Now, there is 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 week-old dishes. An intruder stealthy in its approach has entered, slowly casting its shadow over us.
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. The next several weeks the house looks cleaner. Relieved, we go about our busy lives. She must be back to her old self.
A 10 p.m. phone call. My mother 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.” I hang up convinced it’s all part of the aging process. Old people 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?” “Your mother came to pick me up for our 9:00 a.m. hairdresser appointments. It’s almost 9:00 p.m! This is not the first time.” Stunned, I hesitate. "Is 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. They add up: confusion, forgetfulness, neglect. The intruder has a name. Alzheimer's. 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 new-found knowledge about the disease I’m confident I’ll be able to handle any situation. But I soon 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 rush to the jewelers. 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 take away the keys? What will be the ramifications if I’m successful? She lives alone. How will she get anywhere? My brother and I work full-time. We have our own family obligations. My mind races.
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 not coming back. I assure her I’ll take her wherever she needs to go. It hits me the massive undertaking. Trips to the hairdresser, doctor and dentist appointments, the grocery store, the mall. Besides being her chauffeur, the day will come when her bills need to be paid, her house and yard taken care of and most of all, to keep her safe as the disease progresses. I am clueless.
Anxiety takes up permanent residence in the pit of my stomach. I do not want to be accountable for anyone, even this woman I dearly love who devoted her life to my brother and me. My children are settled in their own lives. This is my time be unencumbered by someone else’s needs. Not wanting any part of it is leaves me feeling tremendous shame and guilt.
In the days ahead I try to comprehend what 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 any of it. I know this disease gets progressively worse and it's more than my mind and heart can handle. I worry about her poor eating habits to the point 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 up every Sunday hoping 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 pills on the floor, others tucked away behind the pillows with candy bar wrappers.
I drive myself crazy about her hygiene. I know she stopped taking baths: the bar of soap on the bathroom sink and the one in the holder by the tub never get smaller. She 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, searching and poking around. I look for those dreaded signs. The worse is when I find 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 lost and powerless like she must feel.
Months later my mother transitions from her home to assisted living to 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—fighting every battle, from dirty fingernails to misdiagnosed pain.
Now 95, she’s physically strong. Mentally she’s somewhere else. She no longer recognizes me and rarely speaks. Each visit takes an emotional toll on me and tears at my heart. It's a reminder of the vibrant active woman she was and what she and I have lost. There are days I would rather not be there. But I go to honor this woman who gave me life, 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.
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