My first connection with Alzheimer’s was with my maternal grandmother. My grandmother passed away in 1996 at the age of 82 after having the disease for 7 years. I was working in Northern Virginia at the time and only made it to the Shore 3-4 times a year, but I became very familiar with the disease. The repeated conversations over and over and over again. Grandma not knowing who anyone was or where she was living. Her primary caregivers were my grandfather, his sister, and my mother. Due to my Grandmothers illness, my mother and I had many conversations about what we would want to be done for us should we also be diagnosed with Alzheimer’s. My mother always told me that she did not want me to have to care for her 24 hours a day should she become like her mother.
My mom, Barbara, made a modest living but she saved, invested wisely and planned for a future with the possibility of Alzheimer’s. Barbara purchased long-term health care coverage for her lifetime and the inflation waiver offered on the policy. Mom had a medical/ financial power of attorney, living will and her assets put into a trust. Mom made sure I had a key to her safety deposit box and knew where all of her important papers were. Even with the experience with my Grandmother, all the talks with mom, all the preparations that my mother made, it was still overwhelming when it happened. Our whole lives changed on Wednesday, October 30, 2013.
In the spring of 2013, mom had been diagnosed with a form of dementia called Picks. Mom had been declining. She had small traffic accidents, so we got her to stop driving. She could not figure out which burner to turn off on the stove or how to put on pantyhose. The week prior to October 30, mom became almost loopy, losing her balance seeming confused and on October 30 her partner could barely get her out of bed and mom could not figure out how to dress. Mom’s partner, Wayne, called the doctor and they said to take her to the emergency room. From that day on mother never walked on her own again. Mom was admitted to the hospital and stayed there a week. Mom had a severe UTI, urinary tract infection. Between the UTI and her dementia, she could no longer walk, write her own name, have a conversation or tell you her birthday. I thought the disease would progress slowly like it had been and we would have time to adjust and make decisions, but overnight my world, my mother’s world all changed.
Mom was in the hospital a week and the doctor told me she could not go home. She would need to go to rehab and have around the clock care. Thankfully I have wonderful friends and family that came to my aid and helped me find the Hermitage. Mom moved into the skilled care side on November 2, 2013, after being in the hospital for a week. I thought she would be able to move to assisted living, but that was not to be. I was away from my job for two weeks, one week with mom in the hospital and one week making sure she was settled at the Hermitage. I went back home to Ashburn, VA, did my one hour and fifteen-minute commute each way to Alexandria, worked my 12 hour day, I work retail, and all I kept thinking about was my mom. I went home that night and thought, I can’t do this, I need to be with my mother. I went to work the next day and resigned. I came to the Shore every week and in the spring I put my house on the market. I sold the house in June and moved to Parksley in July and that was three years ago.
I visit mom every day. I help feed her, brush her teeth, comb her hair, wash her face, put on her lipstick, keep her nails painted, and entertain her. Since 2013 mom has lost almost all of her language skills (she was voted most talkative in her senior class in high school), no longer feeds herself, and can not do anything for herself. The one thing that mom can still do is laugh and smile. My mother always said, “when I get up in the morning, I put my feet on the floor and I choose to be cheerful”. I am very blessed that while mom has lost so much of herself, she is still cheerful. I walk in honor of my mom and in the hopes that one day we may have a first survivor of Alzheimer’s disease.
Eastern Shore Walk to End Alzheimer’s