I wrote this story before my mom got her official diagnosis of Alzheimer’s. When the doctors were still telling us it could be cured…
The sun is shining brightly as my mom, my sister, and I walk out the doors of Valerie Manor. We’re chuckling over my grandfather’s latest story. Today, he is working with children. He’s writing a book and this is not his home, but his office. He used to be a pilot, you know? We get in the car and Mom pauses before putting the key in the ignition.
“If we didn’t laugh, we would cry.”
Something cold hits my heart as my smile fades. Silence slowly ices over our conversation.
“Remember when you gave him Valium?” My sister jumps in, “It was for Tiger, but we couldn’t get him to settle down…plus he threw that chair at Moe.”
We laugh again. The tension easing, but our laughter slightly forced. I recall Tiger, my old cat with anxiety problems, and a smile softens my face. I remember my brother’s best friend, Moe, simply trying to pick up a stack of papers off the table and my grandfather getting confused thinking it was his work, his rage almost palpable as he grabbed the kitchen chair. My face resumes its previous concern. If we didn’t laugh, we would cry. So we made ourselves laugh.
Alzheimer’s is no stranger to my family. It is prevalent on my mother and father’s sides. My paternal grandmother, my maternal grandfather, both my maternal great-grandmothers, and my mom’s uncle all had Alzheimer’s before they died. My dad’s brother is currently living with it. Getting Alzheimer’s is a secret fear I have, and the odds are not in my favor. Every time my memory slips, I have this nagging feeling that it’s starting. Every decision I make, every accomplishment, I wonder if I’ll be able to remember it.
My family was equipped with our jokes to deal with this disease. The slow decay of the mind could be coped with out of necessity. I was not equipped, however, for the attack on my mother’s mind.
It was not Alzheimer’s. The doctors knew that. That’s about all they knew. They could tell us what it was not. It was not dementia, it was not a brain tumor, it was not due to diet, and it was not anything that any doctor could easily identify. They said it could be curable. Of course they can say that when they don’t know what it is. They could even say it might go away on its own, or it’s contagious, or it could destroy your brain in a matter of months. They can say it might be anything when they don’t know what it is.
I don’t know what’s wrong medically, but I know what has changed. My mom has basically lost her short-term memory, but has also been losing long-term memories in her slow decline. Her life is dictated by a white board kept on the fridge, her daily schedule written out for each hour. Her meals are meticulously planned because she can’t remember when or what she’s eaten, and she never feels hungry. She’ll tell you the same story for an entire conversation. She has forgotten how to quilt, she has forgotten how to drive, and she has forgotten how to sign her signature. She used to love to do puzzles. Now, she can’t do them if they have over 300 pieces. She can’t read because she can’t remember what’s happened in the book previously. She used to be a nurse, but got let go from her job. She can’t work at all now. She sits at home: she cooks, and gardens, and cleans. She always has a smile on her face when you’re looking. But I’ve seen her when she thinks we’re not looking. She knows her mind has betrayed her. I’ve seen her hopeless stare; I’ve seen her desperate tears.
I tell her things now that I’ve never shared with her before. I tell her my secrets because I know she won’t remember. In a way, I feel closer to her. In a way, it feels like we’ve grown further apart. She took care of me for eighteen years. Now, I help take care of her.
She doesn’t leave the house much, except to go to church and family events.Since she can no longer drive, she is completely dependent on others to take her places. She doesn’t go out into the general public often, but when I went to visit her last,I noticed she didn’t have one pair of jeans without holes. I took her shopping because my dad thought another woman would be more helpful with shopping than he would be. I picked out all the pairs of jeans for her to try on and took her to the fitting room. I handed her the stack and waited. She tried the first pair on, decided it was too loose and went back in to try the second pair. After five minutes, she came back out with the same pair she had just tried on. She told me they were too loose, as she had just done five minutes before.
I hadn’t had much sleep the night before, and I was suffering from a headache. I thought about cracking a joke, as we so often did, but instead just gave her a tired smile and said, “Why don’t you try on the next pair?”
I took all the extra pants and from there I handed her one at a time. We had to go back to look for more jeans and every time I had to lead her back to the fitting room because she had forgotten where it was. Several times she came out with the same pair of jeans, despite my system of helping her. When we got to the register, she paid as if she were a 10-year-old and I was her mom helping her understand cash. We walked out the door, and I thought about making a joke, something to break the silence. I paused before turning on the car, thinking about what my mom said to me years ago at my grandfather’s nursing home.
“If we didn’t laugh, we would cry.”
I sighed and started the car without a word. I played some Jamie Cullum and my mom told me three times she liked the sound of his voice. She asked me twice who was singing.
I dropped her back off at home. My dad thanked me for bringing her, “I really, really appreciate it.”
He looks tired now. His children have finally all grown up and now he must take care of his wife. I give them both hugs and tell them I love them and head back to my car.
As I pull out of the driveway, my mom’s voice resonates in my thoughts. I think about the day, and I can’t think of any jokes. I don’t feel like laughing. I feel ashamed for being impatient with my mom, thinking of how she had to deal with so much more when she brought three young children shopping. I feel guilty that I get frustrated when my mom can’t remember the stories I tell her, or that she tells me the same thing repeatedly even if I’m desperately trying to change the subject. I feel lost when I look at my mom, and she looks the same, but I know she’s forever different. Something inside is wrong and getting worse. Something inside is forcing her to self-destruct.
I want my mom to be my mom. The woman who, when I sliced my thumb open while hiking, bandaged it with Steri-Strips, the nurse who could tell her children exactly what to do to feel better. My mom: with her kind, gentle smile and grounded perspectives. The phenomenal baker of cinnamon bread, the intuitive cook that did not need a recipe. The laid back parent you could tell anything to and feel safe, the confidante who would understand if you made mistakes and help you become a better person. My mom: with her warm, comforting hugs and non-judgmental, never condescending disposition. She could never carry a tune or match pitch, she had a hard time letting her children drive because it made her nervous, and she didn’t always know the right thing to say. But she didn’t need to, because her loving presence was enough.
I want to tell my mom I know she is hurting. I want to tell her anything to make her easy smile return, natural and unforced. I want to talk to her about how scared she is and tell her I am too. I want so much to tell her it will all be okay. But I can’t, because I don’t know if that’s true. So I go home to visit, and I hug her, I smile, and I make the jokes to hide the pain.
When no one’s looking, though, when I’m alone, I lose my smile. I can’t think of any jokes that seem appropriate. They’ve all become rude and obnoxious. I think about my mom and I try to find some hope in the situation. I try to stay strong for myself, but in the end my resistance is shattered. I think about my mom, and I cannot laugh.