Watching my mom die in such a gruesome way has been agonizing.
You see, it’s not your typical tragic ending. It’s not like the horrific cancer that stole my sister-in-law Julie so quickly, or the unknown reason my father passed away after routine outpatient surgery, or the haunting suicide which took my young friend Zechariah from this world only a short month ago. My mother’s death is a type of death that I have never experienced—the death of her brain from Alzheimer’s. This disease has somehow both slowly and quickly destroyed my mother’s ability to function in this world. My siblings and I started noticing some odd behaviors, repeated questions, and the beginnings of the deterioration of her second marriage nearly 3 years ago. Little did we know what was to come. The hopelessness of watching her suffer, such aimless torment, wander without purpose, confused about her place in the world.
It was subtle at first, but then her personality began to change. The anger and outbursts whenever she would forget a remedial task, or upon asking her a basic question she could no longer recall the answer. Her shame would rise whenever she felt small or stupid, and all in her wake would feel the power of her disease. She was trapped; she could no longer use logic, reason, or faith to self-soothe. Her anxiety became debilitating; she would pace from room to room with a maddening lack of intention.
My family and I went to North Carolina for a month and a half to check on her, quickly realizing it was much worse than any of my siblings and I first thought. We ended up staying for a year. I became her primary caretaker for the first 6 months while we got her house emptied and sold. We helped her move in with my sister and her family in Texas while they built a cottage for her next to their home. For the last 2 years, she has been there. But only this week have I been able to spend long uninterrupted time with her, as she has been staying with us to give my sister a much-needed break. I have been shocked at how much worse she has gotten; this disease is stealing her so quickly. I now notice the empty stares, searching for where she belongs. This disease feels evil, a thief of meaning and desire. She has become hollow, a shell of her previous self.
The other night at dinner, I naively asked her to tell my kids a few stories from my childhood, not realizing that her long-term memory is now beginning to wane. She could not tell my kids stories I had heard my entire life. Yes, even this loss is yet another death I must mourn. Never again hearing my mother, my story keeper, laugh and proclaim the silly things I did as a kid.
It burns to lose the longest witness of my life.
I love you, mom, and I miss you.
I will be with you as you traverse this unknown trail.
(My Mom & Dad in College)