A victim of Alzheimer's

My interest in Alzheimer's and dementia started in earnest about seven to eight years ago, when mom was diagnosed. However, the earliest changes to her personality that I can recall occurred (or were noticeable to me) about ten years ago. At that time, my mother acted normally most all the time, however, occasionally there were outbursts that were unusual for her; accusations for things that did not occur or for things that she'd agreed to but then forgotten about. At the time, these were very subtle signs to us, her children, the uninitiated to dementia or Alzheimer's.  As a symptom of Alzheimer's this early sign was not a shout or a scream, instead, it was a confusing message in a whisper of the pain that was to
come.

Ten years ago seems like so long ago. At that time, moms' routine was the same as it had been for years, probably since 1960 when she married my dad. My mother would get up every morning around 6:30 or so, and was out in her garden by 7 am. She clipped, pruned and tended to her beloved roses for hours. She swept the sidewalk, picking up assorted and empty junk food wrappers and soda bottles left by schoolchildren on their way to school and some inconsiderate adults. Mom did laundry every other day, and hung the clothes out on the line because the sun "disinfects" the clothes and nothing makes the whites "whiter" than the sun. She took advantage of every clear and sunny day, and only stayed away from her garden due to rain, which in Southern California is not too often. On the weekends, if we were not up by 7 or so, she'd come in the house, march straight into my brothers room (and then mine) and shout out the wonders of the morning. "Get up!" she'd shout in Spanish (levantense!), "You're wasting the day! Its beautiful outside!" All this and it was only 7:30 am.

I was the luckiest girl in my school. All my friends agreed that my mother made the most incredible flour tortillas they'd ever tasted. They knew about mom's tortillas because a few of them had been lucky enough to be invited by yours truly for lunch break (our school was only a couple of blocks away and no one worried about kidnappings back then). We'd have lunch and play tether ball until the bell rang and we had to return to school.

Every morning, dad would get up at 5 am. My dad insisted on making his own coffee and he used a coffee pot that he felt was "special" in its ability to brew coffee. Dad felt that most people made coffee too"light". I've heard that people made coffee "light"(with few grounds) because it was a left-over habit from WWII, when coffee was rationed. I'm guessing this went on long enough that folks forgot how to make coffee. Anyway, dad would bring her a cup of coffee every morning- a sweet way to ease her transition into a chilly morning. She'd get up and start making the dough for the delicate, delicious and buttery tortillas that would greet us at the breakfast table along with cinnamon and vanilla oatmeal (more dessert than breakfast, but that was OK with me). It's incredible to me now, but the tortillas were fresh at every meal - breakfast, dinner and lunch (if we were home). Its hard to imagine anyone doing that now but she made them every day for every meal until her children grew up and she retired the habit. This was not unusual to my mom, lots of Mexican mom's in our area did this and so did her sisters. She just did it better than everyone. Even the neighbor kids thought so - just ask Becky. On Easter weekend we were talking over the fence and she reminded me about the fond memories she had of coming over our house, knocking on the door and asking mom for a fresh tortilla with butter (wrapped in a paper towel if we had it!). The heavenly smell of fresh tortillas would waft to the neighbors and the kids couldn't resist.

These memories, recalled in the context of her illness, are devastating for me to write. But I feel compelled to do it because my mom was a wonderful mother, wife, sister and so much more. When I visit her at the assisted living, and I see her kind caregivers change her diaper, wipe her face and hands, I want to have a magic machine that can instantly communicate to them all that she was before this horrible disease took her away from us and from everything she loved to do and be in her life. I want them to know her as I knew her. As my brother knew her. As her family loved her.  She was strong, courageous, kind and so talented.

Mom and I at her assisted living in La Habra, CA

I'll get through this because mom deserves to have her story told and because there are many other mother's and father's and brothers out there who also deserve more than what's happened to them. I also need to do this because as a society, we are woefully unprepared for Alzheimer's. As a family we have had many experiences that I need to share with you so that if this terrible illness should befall your family, hopefully you are better prepared than we were. We need to speak for the victims, their families and demand better care, compassion and support.