Don’t Assume

My dad was originally diagnosed with Alzheimers 4 years ago, by a neurologist recommended to us by a friend. The Dr patted my mom on the arm and said “There’s nothing you can do” and walked out. We had to research everything on our own. We didn’t know what to do or how to get help for him. The Alzheimer’s Association helped greatly, but something was still missing. We found a new Geriatric Dr that specialized in Dementia. Behaviors became more prominent. 3 years after his diagnosis, there was clearly something wrong, although our Dr said his behaviors were perfectly normal for Alzheimers. After researching on our own, we brought up Lewy Body but the Dr said he didnt have it because he didn’t have tremors. My dad was genuinely a good guy, smart, loving, funny, personable, and mechanically inclined. As the disease progressed, he talked to a friend/enemy (depending on the time of day) in the mirror on a daily basis, he started seeing people in his basement who he would yell at to get out, he began thinking people were trying to kill him, he became obsessed with Jesus and death, then the last straw was when he saw dead drowning babies everywhere and would scream and cry for someone to save them. The Drs still said it was Alzheimer’s. But we KNEW something else was going on. After a 6 month waiting list, we finally got an appointment for my dad with a neurologist specialized in dementia. That’s when appropriate testing was completed (bloodwork, spinal tap, DAT scan) and we found he had Alzheimer’s and Lewy Body Dementia. He ended up having to go on very strong anti psychotics because he had psychosis and was uncompliant with pretty much everything. The meds destroyed his liver. He died within 6 months of his diagnosis. He is in a better place now, that we are sure of. He was so scared, confused, and angry for way too long. I share this story so caregivers think twice. Make sure you find a Dr that is specialized in dementia. Don’t allow them to poo poo you. If something doesn’t feel right, it probably isnt. Research. Research. Research. Lewy Body is not well known like Alzheimer’s. We need to raise more awareness and find a cure.