Mama and Me Part 1
A week and a half ago, May 23 to be exact, was the second anniversary of Mom’s passing.
I was only a year or two out of high school, still a teenager, when Mom started showing her earliest signs. I don’t remember the exact year but it was the 1996-1997 timeframe. She began sticking Post-It notes all over the place to remind herself of various appointments. She also started regularly commenting, “My memory just isn’t what it used to be,” and she started taking gingko biloba to help the situation. We would joke with her and tease how she was getting old, none of us imagining it could be Alzheimer’s. After all, she was only 56-57 years old at the time.
A few years would pass before we truly began to fear she had it. Her behavior and memory issues clearly now were not normal. We knew something was definitely wrong. My siblings and I surprised her with a murder mystery party for her 60th birthday in October 1999. She struggled to take part in solving the mystery, frequently repeating herself, and ended up spending most of the evening shamelessly flirting with my cousin’s husband. For those of you who don’t know Alzheimer’s, this is a classic sign — inappropriate behavior or comments that the person under normal circumstances never would do.
In September 2000, about a month before her 61st birthday, Mom was fired from her job at the local Hallmark store. The memory stands out vividly in my mind. Her boss, Abby, a friend of the family, knew my oldest sister was working in the same business complex and walked down to talk to her about it. Abby said she had no choice and thought the family should know. Mom was messing up orders and costing the store money. She also was forgetting basic things she’d always known, such as where the light switch and box of tissues were. We all knew she had some kind of dementia by this time, but her losing her job still came as a bit of a shock for me. It made her situation all the more real.
I was living away from home at the time. I had recently finished school, becoming a licensed massage therapist, and was working to build my career. I remember trying to imagine what the future would hold for her and for those of us who would care for her as she progressed, but I couldn’t fathom it. My 20-year-old brain had room to process only one thing: My dear mama had Alzheimer’s disease far too early in life. She was beautiful, funny, feisty and the best mom a girl could ask for. She did not deserve this fate. I couldn’t begin to know what road lay ahead, but I knew I wanted to be by her side to help her in any way I could. My siblings were all married and busy raising families of their own, a few of them living out of state. They didn’t have time to help out as much as they would have liked. My situation in life, however, gave me the perfect opportunity to be the one to step up. I could almost hear God whispering in my ear, “This is your path.”
I moved back in with my parents in October 2001, three weeks before my 24th birthday. I lived with them until September 2003, when I rented an apartment a few blocks away, still spending at least some time at Mom and Dad’s every day. From 2001-2007, my entire life revolved around caring for her. I didn’t date, and I didn’t spend time with friends; all of my free time was spent with my parents. Even my giving up massage in 2004 to go back to school for journalism was a minor detail that played second fiddle to Mama.
Through it all I did my best. I laughed with her, and I cried with her. I got angry and frustrated — with her, with Dad, with the disease, with God. I lost my patience and had to just walk away from many situations. I would find some secluded part of the house and just sit and cry. I loved her and cherished how much closer our already strong relationship had become and cried all the harder the first time she referred to me as “that lady.”
She would hit me, kick me, bite me, pinch me, anything she could as I wrestled her into the shower or made her do anything else she didn’t want to do. I repressed the pain and soldiered on. When I finally would get her into the shower, she would stop battling and with a small, sad, child-like voice would say, “I hate you.” Every time I responded the same thing: “Well, I love you.” “No you don’t,” she would reply. “Yes I do. I love you so much that I’m going to stay right here no matter what you say or do. I will always be here for you.” This always calmed her down, and I would grab the opportunity to do or say something silly to make her laugh.
As she progressed, she became increasingly anxious and afraid in her now unfamiliar surroundings. I frequently would go home at the end of the day and break down and sob, begging God for help, not knowing how to console her or how much more I could handle. I begged Him to just end it all, to end both of our misery.
I also spent those years reading as much as I could on Alzheimer’s. I became something of an Alzheimer’s expert, researching the latest findings, learning what the average lifespan is and what to expect in the various stages. I was spending lots of time with the Alzheimer’s Association, working on projects with them through my journalism classes and forming a team with my siblings to raise money during the organization’s annual Alzheimer’s Walk.
Still the answer to one question continued to elude me through all my research: What could possibly cause this disease so we can stop it before it begins? No one had the answer. I refused to believe the brain was nothing more than a ticking time bomb waiting to implode. I knew something had to cause it, but what? My siblings and I discussed it endlessly, trying to find some common thread between Mom’s health history and those of her siblings who also had gotten it. But at the end of the day, we always seemed to be chasing our tails. No one could give us the answer to the quagmire that is Alzheimer’s disease.
Many long years would come and go before fate would bring my siblings and me a book that might just unlock the mystery of Alzheimer’s. In the fall of 2017, hope blossomed.