My story is about my mother, who passed away six years ago after a 10 year struggle with Alzheimer’s. My father was her primary caregiver; however, I lived nearby and helped out as much as I could. The story I wrote, "Stories of Home," reflects on what I learned from that experience.
The author's story originally appeared in Hungryhearts, a newsletter published by the Office of Spiritual Formation of the Presbyterian Church (U.S.A.), a ministry of the General Assembly Council.
Stories of Home
Caring for someone who had always cared for me was hard to accept. Some part of me was ripped apart as I watched the daily losses Mom suffered as she slowly slipped away. Yet, as devastating as Alzheimer’s is, our family somehow managed to grasp every bit of life, every bit of hope, and every bit of love that was possible. Of course, there were times when I would have preferred to remove myself from the chaos around me. Days when I simply did not want to walk into my parents’ house because I didn’t know what to expect on the other side of the door. Or maybe it was because I did know what to expect on the other side of the door that made turning around and walking away so appealing. What kept me from turning around and going back to a house where no one had Alzheimer’s? Why didn’t I hide out in a place where conversations made sense and things seemed normal? What gave me the strength on those days when I thought I had none? It was the stories that held me up. Stories I had heard all my life. Stories of home.
Now I’ve always loved stories, and I’m even known as the unofficial family historian, the keeper and teller of stories, the one you could always count on to remember that it was a blueberry milkshake we had at the Howard Johnson’s in Wytheville, Virginia, 35 years ago. I was the one who listened with fascination as my parents told what it was like growing up during the Depression, what life was like in the days when people owned radios and not televisions, when homes had only one telephone and it was black and attached to a cord. I loved the stories I heard about my mother, back when her name was Margaret Billinghurst, long before she was Margaret Shull, and even longer still before her name became Mom. And I still remember the day my mother handed me a stack of faded letters to read, letters she had kept tucked away in a box in the corner of her dresser. They were the letters my father had written her in the early days of their courtship. For hours, I poured over them, one after another, as the opening chapters of the story of Margaret and Peter unfolded before my eyes.
Yet as fascinating as these stories may be, they come with no guarantees of how they will turn out, no revelation of what might lie ahead. Some stories are easy, some hard. Some we have to live with for a while, allowing them both time and room to settle. And then there are those stories that never seem to settle. But none are without purpose. Those stories, at their very best, have given me deep and strong roots, plus wide and clear perspectives. As I lived through those 10 years of my mother’s gradual descent and inevitable death to Alzheimer’s, the stories were a reminder of what was real, what was truth, what mattered. And it was through the remembering of these stories that I came to understand where I was supposed to be. My stories kept me home.
How strange that it took a disease known for robbing memories to bring so many to mind. As I watched my father care for my mother, I would remember hearing of how he and his sisters took care of their dying father. Dad would go to work, then go to his parents’ house and help take care of his father before finally going home to his own family. Years later, when it was his wife who was ill and needed the care, my father’s insistence and determination to be there for her didn’t come as much of a surprise to me. Every day he spent caring for her he counted as a blessing. He was just doing what he had always done. That was the lesson learned, the value passed down, the truth for me. Family was important. Taking care of one another was important. Being there was important. Presence mattered.
Sitting with my mother at the piano, I would play her favorites. Some days the music would spark a memory and she would sing along. But more often than not, she would just smile. Watching her smile, I would recall all those piano lessons my mother insisted I take, all the practicing she made me do. She said one day I would thank her. And she was right. I did thank her. We shared music until the end.
And we shared memories, too. I just had to look at my mother to remember how much we did together. How we’d take the bus from Grandmom’s house to downtown and then go on to the A&P for groceries, to one bakery shop for rye bread, and to another one for the cheesecake. We’d stop for a bite to eat at the luncheonette, next door to the Buster Brown shoe store. Sitting at the lunch counter, I’d swing round and round on those chrome swivel chairs as I waited for my hamburger and real soda-fountain cherry coke to arrive. So when my father said that he was glad I loved my mother so much that I would care for her the way I did, all that went through my mind was, “What else would I have done?” All I was doing was what Mom would have done. I learned what I needed to do from a lifetime of watching her.
Family. Presence. Commitment. Love. That is what I learned from our family’s stories whether it was about a mother who cut crusts off sandwiches and made special casseroles “just because,” or a dad who cleared his work schedule so we could make a promised trip to see Abraham Lincoln’s birthplace, or a brother who let me be his co-pilot as we’d go to Mars and beyond in our imaginary spaceship.
But stories come with an obligation. And the obligation is that we need to remember them, listen to them, learn from them, pass them on. One of my favorite biblical stories is a story about the importance of stories. After the Israelites finally crossed over the Jordan, God told Joshua to take twelve stones out from the river and lay them down where they set camp. The stones were to be a reminder to the Israelites of how the waters of the Jordan were cut off, allowing them safe passage across. But it wasn’t a story meant only place just for them. It was a story meant for their children, and their children’s children as well. They were given the story so they would never forget how God provided for them (Joshua 4:1–7). Our stories are like that as well. They remind us of what we need to know, and if we listen, they will show us what we need to do.
Alzheimer’s made me listen to my stories. And my stories told me to stay where I was and to plant myself in the midst of a new story, one definitely affected by Alzheimer’s, but ultimately never stopped by it. Sometimes it takes staying where you are, regardless of how unpleasant or sad that place might be, in order to find out that your story is stronger than anything that might try to come in its way to stop it. Stronger because it is so intricately connected to God’s story, the story of God’s amazing and overwhelming love for us. For me, it took staying to discover that even in the midst of Alzheimer’s, even in the midst of death itself, a family was still being shaped and a story was still being told. It took staying to discover that sadness and joy can stand side by side. It took staying to see that tears and laughter, anger and acceptance both have their place. It took staying for me to see that you can grasp hope in the midst of despair, and even life in the face of death. It took staying for me to experience the breadth and length and height and depth of love.
If I had gone away, if I had not made myself available, I might have shed less tears, but I wouldn’t have the memory of one particular evening that took months before my mother died. I walked into the house as I had done so many times before, and said “Hi, Mom . . . Hi, Dad” as I had done so many times before. I walked into the family room, kissed my dad, then walked over to my mom, gave her a big “Hi, Mom” and bent down to kiss her, just as I had done so many times before. But this evening, this one evening, she did more than just smile back and give me a little kiss. This evening, for the first time in a very long time, she clapped her hands and said, “Mary.” And then she smiled and that was it. Not another word. Just Mary. It was the last time I would ever hear my mother call out my name. Mary. How wonderful it sounded to my ears! And as gut-wrenching as it felt years before when Mom didn’t recognize me, it was somehow assuaged by how exhilarating this felt. She called out my name. And that moment lifted me higher than you could imagine. Never would I have thought that there would come a day when something as simple as that would mean so much.
So when I felt exhausted, when I thought I could not go on, when the sadness became too much, I remembered the stories. I remembered that once upon a time my mother made a special heart-shaped casserole just for me.