She tries to remember. She shows me what her world is like now, and I try to meet her in it. We count trucks when we are in the car. “One big truck,” she says. “Two big trucks!” Counting trucks is sometimes when she is the happiest, and the most alive. The Lyft driver counts along with us, and as we get out of the car, he adds, “We are at seven, right? I’ll keep up our tally. ”
Dementia continues to turn the clock backward, leaving her more and more like a child, and me, her mother. It started gradually, and it gave us some time to learn and grow with her. In her mid fifties she stopped working, driving, cooking, and handling finances. In our mid twenties, when my father passed, my now husband and I moved in to care for her. We had to learn how to ask for help, and I had to learn how to let go of what used to be. Her questions were morphing, along with her facial expressions, the color in her voice, and even her eyes. Her questions used to spark conversation: “How many moons are there America?” Now, she has trouble finding the words to ask. Now, she fights me, trying to eat popcorn kernels for dinner. Now, she can’t be left alone. I fear the day her questions end. So I fight for her. We do puzzles and throw a ball. We take walks and I talk to her. We dance to the Wheel Of Fortune tune in our living room until the floor shakes. I am learning how to be her person, and I am failing, and I am succeeding, and I am living in this journey with her. I know with every truck that she counts, that we are winning.
I started sharing little snippets of our experiences together on instagram when caregiving became a main focus in our lives. I have struggled with what to share, if at all, as I wonder what my mom would have wanted. Most of what I have shared so far have been little bits of happiness, but it's those moments in between, the ones that bring us to our knees, that unite us and make us stronger. My goal is to share a bit more of our days; raw and unedited. They may not always be the picture perfect post, but they are real, and they are our story. My mother loved helping others, and I believe by sharing her courage, perseverance, and her endless love, she still can.
Thank you for finding yourself here. I hope our story will inspire you to find little bits of joy in the smallest moments of your day, whether or not you are experiencing a similar journey. If you are also caregiving for a loved one, I hope we can swap ideas, learn from one another, and share in this experience together.
Photos by Jennifer McKenna Photography