Changing the Future of All Minds

By Ann Campanella

When I was 33, I learned that life can change direction when you least expect it. My husband Joel and I had moved from Houston to North Carolina to be closer to my parents, who were in their 70s and lived on the coast. We were excited about starting a family and envisioned sharing our future kids with their grandparents.

I had my first miscarriage at the same time my mother started forgetting things. At first, it was easy to overlook the changes in her. After all, she was in her 70s. Maybe this was normal aging. Besides, I was busy teaching riding lessons, taking care of horses, writing freelance articles, trying to get and stay pregnant.

Mom’s emotions were erratic. On the phone, we had lovely conversations, but her responses to my questions became vague. Her weekly letters grew sparse.

As my mother’s symptoms intensified, I had two more miscarriages. The last one was a molar pregnancy with a cancer scare, requiring weekly visits to the hospital for blood draws. I wanted and needed my mom. But she was six hours away and seemed oblivious to my situation, which was unlike her.

As I look back, it’s hard to imagine that I didn’t know she was spiraling into Alzheimer’s. But I was caught up in my own life, wondering if I would ever be a mother and questioning at times who my own mom was becoming.

Each visit to my parents’ house revealed new and shocking concerns. I still didn’t understand what was happening, but I knew my mom needed help. I just wasn’t sure how to provide it.

Over the weekend, I learn that Daddy took away Mom’s car keys after she started getting lost when she drove to the grocery store. It’s the same store she’s been to for years. He says she’d sit in the new car he bought for her and fiddle with the knobs. If he was outside, she’d roll the window down and ask him, “Why do they make these damn things so confusing?”

Saturday morning, Mom walks behind the couch in the living room. From the waist up she looks normal. She’s wearing her white shirt with gold buttons and has carefully chosen a strand of pearls to wear around her neck. But when she passes the couch, I see that she has forgotten to put on her pants. I have to look twice. I’m too stunned to do or say anything. My father calls her back from the door when she tries to leave the house. She argues with him, then suddenly looks down at her bare legs, ashamed.

Later, Daddy picks up hamburgers at Hardees. He follows Mom around with the bag until he can get her to eat. They walk around a table half set with folded napkins, empty water glasses and no plates. Mom hovers in the kitchen, moving back and forth between the stove and the table as if she is checking on the progress of one of her dinners, only there’s nothing in the oven.

All weekend, Mom searches for her notebooks and appointment calendars—the ones she can’t read when she finds them. I wonder how the house feels to her as she wanders around it, day after day, darkness creeping around the corners. I’d like to ask her, but when I do she gets upset. Her mouth forms a thin line that crumples, her face falling. She says my father has stolen something from her.

She fluctuates from childlike and aggressive to her gentle, wise self, intent on doing the best for her children. One moment she is furious with my father or sure someone is having a party without her. Then she throws out a statement like, “Now we don’t want you all worrying about us.” Her voice changes from hard and cold to warm and soft as fur in an instant. For someone like me who likes to categorize things, it’s hard to get a handle on what is happening, who she is. I don’t know where to begin. When I’m convinced she’s over the edge and needs constant supervision, she turns back into my mother, her voice smooth, soothing all my rough edges.

(Excerpted from Motherhood: Lost and Found)

Part of what’s so confusing about Alzheimer’s is that sometimes a person can seem fine. That was true of my mother. In my 30s and wrapped up in my own life, I could almost reassure myself that my parents could handle whatever was happening. Almost.

But after this visit home, I couldn’t stay lost in my own world. Something had to change. My mom needed help.

Ann Campanella, author of Motherhood: Lost and Found, is an AlzAuthor.  AlzAuthors.com features writers who have books or blogs about Alzheimer’s and dementia, with the mission of connecting caregivers with resources.

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