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When I was young my mom wrote us letters from Santa Claus. I know it was her and not my dad because they were in flowy, loopy red ink and she loved to handwrite cards in beautiful script. Once she bought a set of calligraphy pens and would practice her lettering at the dining room table.
In the summer she took me to the Renaissance Fair. She sewed a long patterned gown for herself and made me a leather vest and floppy peasant hat. We watched jousting in the morning and in the afternoon I listened to her play music with her woodwind ensemble. Between songs they performed silly skits and laughed together with the audience of twenty people sitting on hay bales.
She would invite friends over for dinner on the weekends. Early in the morning on the day of the party she played celtic music on the stereo while we cleaned the house. The vacuum left the carpet in neat patterned rows like a freshly mown lawn.
My mom learned that her sister’s troubling mental decline was caused by MAPT Frontotemporal Dementia. She learned that she and all of her other siblings might have the gene, and that those who had it might have passed it on to their children. Her sister’s first symptoms of dementia appeared at age 35.
When I was in middle school Mom left boxes of her things covering the dining table for weeks at a time. We asked her to put them back in the closet but she wouldn’t. To eat breakfast my brother and I would clear a space at the end of the table or take our cereal and sit on the living room stairs.
When I was in high school my parents separated and she moved out. She had changed a lot. Was it because she had dementia? Dad said he didn’t know, but I think he did. It’s a hard thing to say out loud about someone you love. You have to be really sure, and for many years there was no way to be really sure.
When I was in college I traveled to Minnesota and had my blood drawn for MAPT genetic testing. It was a year before I got the results because they couldn’t give them to me over the phone. I sat down in a small exam room and a counselor gently told me that I am a carrier of the gene.
I’m 30 now. Earlier this year I got a vasectomy. It was uncomfortable but quick. Before my appointment they asked me why I wanted the procedure. I said I don’t want to have kids, which is not really true.
I don’t know what the future will hold for my mom, for me, or for the rest of our family. Right now there’s no treatment for MAPT FTD. It’s not too late for new therapies and drugs to have a huge impact on our lives.
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