In my mind and heart today, I’m feeling warm and fuzzy. I was able to spend the whole day with my sweet, strong, loving mother. My Aunt, her loving sister Linda, brought her over, and we had such a wonderful day.
Three years ago my condition worsened greatly. My diaphragm was failing, and I was close to death. I made it through it, but my mother’s mind began to slip. Every time we were together I could literally see her heart break. She couldn’t bear to see her youngest in such a weakened physical state. I was her tomboy that loved the outdoors and every sport imaginable. I chuckle when she tells me Sarah Anne you exercised too much. Ironically, she had lost her baby sister to the same horrible disease. My aunt was only 43 years old. This was such a hard time for our family especially for those sisters and her only son.
As I progress, so does my mom which is the worst. It makes our times together fewer. The logistics for me are hard but as she progresses she becomes less compliant to go on adventures and outings. I’m busily trying to live and advocate for education, social justice, love, and a cure for ALS until I take my last breath which ties up my days. I keep hearing Willie Nelson in my head “Still is still moving to me” as I keep rolling. I know my mom wants me to fight on.
Alzheimer’s is the worst. She is confused easily and her short term memory is shot. When I’m with her, we revisit the past. It’s always full of knee-slapping laughter and occasionally tears. It’s never a disappointment even if we laugh at the same story 20 times. I’m still so blessed by her love and earthly presence. Once after all of her fuzzy-headedness(this is one of her descriptions) started, she told my sister “Judy, I think God is helping me forget so I can deal with Sarah being so sick.” I think she may be on to something.
My mom and I both have bumpy journeys ahead. ALS and Alzheimer’s are really two of the worst fates for any human to bear. I always remind my healthy brain to focus on each minute while trying to prepare for the worst. This has always been my modus operandi with ALS and my advice for others who share my bumpy path. While you are able do these things if you can: handicap your bathroom, find equipment in loan closets, register with the local ALS Chapter, educate your friends and family, and then enjoy each moment one day at a time. The storm is coming and you will encounter many break-downs as you look into the future of living with ALS. It’s very ugly, hard, and expensive. But, I know someone will rather you be here even if it is excruciating at times. Just like my mom keeps reminding me when we talk, “Young lady, you cannot go before me. You are my baby.” I know momma. I know. I’m fighting very hard to stay.
Sarah Anderson Alley
Dedicated to all those who live and love through Alzheimer’s.
Quotes of the Day:
“If you learn to listen for clues as to how I feel instead of what I say, you will be able to understand me much better.”
— Mara Botonis
“We remember their love when they can no longer remember.”
“It occurred to me that at one point it was like I had two diseases — one was Alzheimer’s, and the other was knowing I had Alzheimer’s.”
— Terry Pratchett