I was best friends with my grandma. As a child, I spent most of my time with her since she watched me after school until my parents got out of work. We did everything together. As I got older, we remained close. I would take her to appointments, take her grocery shopping, call her daily to check in and say I love you, I’d pick up her laundry and bring it to my house and wash it and bring it back so that she wouldn’t have to worry about carrying it down her apartment steps to the laundry room. In 2014, she started telling me her apartment was haunted. Within months, this progressed to her arguing with these “ghosts” and she became convinced they were trying to kill her. She wouldn’t eat because she was worried these ghosts were trying to poison her, and her neighbors would call us in the middle of the night saying she had her apartment door wide open trying to get rid of these ghosts. I brought her to her family doctor who referred her to a neurologist. She was also having muscle tremors, so the neurologist diagnosed her with Parkinson’s and put her on medication. The paranoia and hallucinations escalated. We were in and out of the ER and multiple doctors trying to get an answer. Finally during one ER visit, she was diagnosed with Lewy Body Dementia. I had never heard of this disease before. The doctor couldn’t give us much information because there wasn’t much known about this rare disease. All he could tell us was this disease progresses very rapidly, and that we would only have a couple months left with her at most. She came right from the hospital to my home and my family and I became her full time caregivers. There were nights on end that we could not sleep because her paranoia and hallucinations had left her so agitated, it was like she was a completely different person. She wasn’t the grandma I had growing up any more. My daughter was 1 at the time, which made this even more chaotic. Within a month of her living with us, we had to call hospice. She was quickly losing weight, and becoming weaker and weaker. She could no longer walk without falling. Eventually she had a hard time even holding her head up. She became bedridden and we had a hospital bed placed in our living room for her. There were so many times where hospice would tell us to say our goodbyes because she only had a couple days left. But she held on. We were constantly saying good bye, wondering if today was going to be the day that she would go. On August 1st, 2015, the day my daughter turned 2, my grand mother passed away, 13 months after her diagnosis. She went from 130 lbs, to 50 lbs. This was the most challenging 13 months of my life, watching my best friends body and mind betray her. This disease is ruthless, and it does not discriminate. I felt so alone during this time, especially since nobody understood what this disease was. This disease is awful. To anyone caring for someone with LBD, you are not alone.
Jan 09, 2019