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Caretakers Are United in a Sea of Dementia Wounds

Dementia and the impact on the family

There has not been one day in the past five years that I have not watched the changing gait, the far away gaze, or placed clean clothes on the bed for her to wear. Recently, the adult diaper with a reminder that the inside print goes to the back. “Like this?” she says, as she slips her foot into the hole for her leg, has become the first step.

I stand in the door that leads to the bed where she sleeps. There is one window with a dark curtain that blocks the view from the people in the trees from looking inside.

My husband and I wrapped in roofing tarp around the mattress. The odor from incontinence that has taken over the room permeates right to the door as we enter the house. We’ve wrapped the mattress in tarp. I’ve pursued widow’s benefits from my father’s time in the Air Force. We need more help as she walks down the corridors of dementia. She is beyond the middle of life where she could drive, shop by herself, make coffee, or even dial 911.

Two plastic bins are the beds to stuffed toys. They are her children. She feeds them, kisses them on their lips made of fluffy fabric. I realize that had I applied for benefits earlier in her career of dementedness, there would have been more money by now to hire more help for her.

She is ninety-two years old. I rescued her from Florida six years ago when she took in a younger man and he convinced her not to pay her mortgage on the condo she owned. From the money she earned from working at Bloomingdale’s in New York City, she left with $60,000, and put it into a place to live out her years. One-year of not paying for her mortgage was enough for the Association to begin evicting her.

She boards the train. She has lost everything. No home. No access to her previous life as she talks about a shower curtain she liked and the blanket her grandson gave her. Photographs became the collectors of dust or mixed in with old food in the dump. Her boyfriend changed the lock as soon as she left, and it took two weeks to get him out of the apartment she found for them around the corner of her condo.

The rescue came by way of an officer in Broward County, who found her cowering in her abandoned ground floor condo, got her into her car, and within thirty-six hours was with me in my New York City apartment. It was December, but she wore Capri pants and open sandals. She clutched her bag as she roamed through Penn Station. My husband found her. We inherited an 87-year-old orphan.

Her eyes hold a memory of another life. The hazel eyed spitfire from the 1950’s who used her face to navigate her needs and authenticate her value, has become a cliché. Unknowingly, she is part of a movement in living longer with a compromised brain. She was on her way to living in the streets of Miami. We caught her before showering in a public pool for one dollar became appealing to her as a lifestyle. “You can save a lot of money,” she said to me before the rescue. She slept in her car for a week in a store parking lot with other homeless people. If I didn’t get her at that point, she would have died in the streets.

The money for caregivers to keep their family member at home is on a desk somewhere in congress. We wait for the bill to pass. There are glimmers of hope that it could be passed before she dies before we all die from exhaustion and functioning like poor politicians who disregard the issue until it sits on their door steps. We know that this is true.

The hours spent caretaking will never be recouped or will they be charted like the constant memory of one face, one voice or the smell of the rooms where urine falls out of her to the floor. The promise to myself to start ripping out the rug in the bedroom happens all the time. The reality of trying to get back to my own life without interruption is just as real. Along with my husband, I fit the unseen profile of a caretaker for my old mother. She can’t help it. I know this. At sixty-seven-years old everyday I enter her single-wide on my property in Arizona and begin her day with an egg omelet in coconut oil, cinnamon raisin bagel, chopped bananas, big purple grapes, coffee and an extra sandwich incase she gets hungry before I return around 1 PM. The time I use is unaccounted for. Time is precious when there is a cloud around it that vaporizes quickly during discussions with others who consider caretaking noble.

It’s a routine of nobility when you can watch a child grow into the next phase in their lives. Caretaking for an elder is the experience of the opposite. There is no growth toward graduation, getting a car, shopping for themselves. Caretaking for an older parent is watching someone you once knew as lively and independent, stare into the eyes of a pink teddy bear that now has eyebrows like her mommy.

I convince myself that she is growing, but in a different direction. She laughs like a four-year-old. She smiles with adoration into the teddy bear’s face and tells it over and over how smart she is and beautiful. “I’m going to return her to her mother,” she says to me. A she paints eyebrows on the pink face and feeds it water, coffee, eggs and cookies. “You like that,” she says to the fabric with eyes and no emotion, then she finishes it with a big hug.