Have you ever lost someone? The pain is unimaginable, ripping through you like an express train. But what if you lost that person again and again? The agony of the loss knocks you off your feet until you’re numb. That’s what it’s like when you lose someone to dementia.
My mom was my best friend.
She was my shoulder to cry on, and I told her everything. On summer mornings, she’d lie in bed thinking, so I’d hop in next to her and we’d talk about everything or nothing at all. She was there to hold me when I lost my first love and to celebrate with me when I found my last. We spent an entire summer planning my wedding and finding ways to keep the costs within my measly teacher salary. Rummaging through bargain bins at the Christmas Tree Shop, we found the perfect, gold-trimmed ribbon to don the pews at the church.
After I was married, I moved to Colorado and being two thousand miles apart put a dent in both of our souls. But, she was there when my babies were born, helping me figure out the tasks of new mother for the few weeks she was able to be away from home. She was always there, even if it had to be over the telephone wires.
Until she wasn’t.
It started off slowly—spoiled milk in the refrigerator, aluminum foil in the microwave, and accusing my uncle of leaving tiny, recording devices under her couch. She’s getting forgetful with age…paranoid. That’s what I told myself.
But then things weren’t so small. When my mom and dad finally moved to Colorado, she and my brother took separate cars to church one night. Matt followed my mom back to their house but instead of turning down their road, my mom went straight. I received the phone call from Matt frantic, explaining the situation.
“Why didn’t you follow her?” I thought it was a reasonable question.
“I don’t know?”
I lived an hour and a half away, and it was eight o’clock at night. Pulling on my coat, I waited by the phone. There was no way I’d be able to find my mom in a city at night, though I’d search all night if I had to. Before leaving out the door, I called Matt one last time. Why wasn’t he searching?
A pair of headlights turned up our driveway. Impossible. We lived in a housing development in the country littered with dirt roads and deer. I rushed down the stairs to greet my mother. Tears streamed down her cheeks, and her whole body shook as she melted into my arms.
“He left me,” she sobbed. “I found a road that I recognized that went to your house, and I kept going.”
I wrapped her in a blanket and lay next to her on the bed in the spare room, her body heaving as she fell asleep.
As time went on, the incidents became more frequent. My parents moved back to New Hampshire because Dad couldn’t handle the altitude. My sister insisted they live in a retirement community. My mom didn’t like the price tag, so six months later she found an apartment in the town I grew up in. I was their telephone caregiver, calling every day on my way to work.
That summer when we visited, it was becoming more and more apparent that Mom couldn’t care for Dad, who was eighteen years her senior. He fell a couple of times, and she called the ambulance because she couldn’t lift him. Being there, I learned it was because he was malnourished and dehydrated. A local independent living facility provided them with at least two meals a day, and they could make friends. It worked for a while. Mom accused the maids of stealing her things, but it was her paranoia setting in again.
But then Dad got sick.
My mom insisted on coming to live with us. It was always how I imagined things would be. When Dad passed away, Mom would come live with us and help me with my children. But Dad wasn’t gone yet.
We moved her out to Colorado, and she lived with us. Frequent plane trips to New Hampshire drained my bank account. She missed him and in less than a year she wanted to move back. Things were different now. We hid her car keys, we arranged for her to go to a local senior center while we were at work, and she became severely combative.
For three years, my mother lived with us as I lost her day after day. At times, it felt like she ripped my heart out and stomped on it. I lashed out at her in my own frustration one day when she helped me clean out a closet. I missed our conversations, our comradeship and the love we’d always shared. It was as if someone reached down to Earth, snatched my mother and replaced her with a stranger. After three years, my husband and I made the decision to place her in a nursing home on a memory care unit.
I lost her again.
It was the most difficult thing I’ve done in my entire life, but I had to do it for her safety. Mom would get angry with me for no reason at all and storm out of the house. My husband followed her in the car until he could coax her inside. Her leaving also saved our marriage. The strain and stress it put on us those three years isn’t something I would want anyone to go through.
Have you ever lost someone? I lose my mom everyday, but it’s not as painful now. When you lose someone to dementia, at least for me, it’s like you’re going through the pain of losing someone suddenly again and again over many years. At some point, the pain numbs because it has to, or the stress will eat you alive. I love my mother, but the disease has stolen precious years of her life. It’s in the small glimmers of her spirit—a smile, an mischievous eye aimed at my husband, a hug from recognition—that I find hope that someday we can be together fully again.
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