My mom was courageous and kept her sense of humor as best she could. She has been gone for three years now. She passed about three weeks before Robin Williams did. There are no words for tragedy, except all of us who know what LBDA is. Up until then, few people I told knew about it. My dad and I struggled to understand what she was going through.
At first, all they said was it looked like Parkinsonism; then they declared it Parkinson with some form of dementia. I was in charge of all the meds. I took her to doctor after doctor appointment and was her full-time caregiver, hands-on, and Dad took care of the bills and shopping and his mother, my Nana, who was much older and dying of Alzheimer's.
I have a sister, but she rarely showed up, and often it was to have us babysit my nephew so that she could pursue her dream of being an independent businesswoman, wife, and mom. We loved our nephew, so we did the free babysitting. It is hard not to be angry with her.
I could not leave my mom alone. We did not have the money for a nursing home, and mom did not want to, and I did not want to leave her there. It is so lonely, draining and heartwrenching to be a caregiver by yourself. The strain alone affected both of our health. Dad had to go into surgery for his heart and eventually took care of both. Fulfilling the housework and chores as best as I could. I loved her so much and to see her suffer, she was a vibrant, hardworking, loving woman who did so much for her kids. She deserved better, but it is funny, what seems like hardship now, I miss considerably. Tucking Mom into bed just as she liked, each cover was a specific way and putting her my old yarn Rosary around her neck as she asked. Helping her in and out of her wheelchair, helping her shower; and even holding her while we cried and I dressed her.
Running out to get a fudge sundae from Detroit National Coney Island so that I could see her face light up and say "That is good!" Watching her favorite programs with her-NCIS, CSIs-she loved Horatio Caine and his sunglasses! Watching the Big Bang Theory with her, the program she called "the one with the college kids" Taking her out to a Polish deli after a podiatrist appointment. We sat in the car listening to her country music and eating onion cheese and deli salad just to be together. Taking her to church and just being with her. I am sorry this is so long, but there is just so much I want to celebrate about her. Please, someone, find a cure for this awful disease.