September 2018 my Dad ended up in the hospital with fluid on his heart. After suffering 3 heartattacks during his life time and a triple bypass the year before. This wasn’t anything new to us. He seemed to really be slowing down and more withdrawn from life. We thought maybe he had some depression. October 30th that same year. He ended up in the hospital with confusion. He didn’t know where he was. No one could figure out what was going on. They thought at first it was lack of sleep. He had been wearing a monitor 24/7 since being hospitalized for his heart. He was getting up during the night. Wandering around the house. This confusion and many trips in and out of hospitals and the ER, due to falls. Lasted until late January. He was put into a nursing home. After only one week of in home care my mom could no longer care for him. He was unable to walk, dress, take himself to the bathroom etc.. Basically functioning on his own or with limited help was impossible. It was heart wrenching. He was only 66 years old. We still had no definitive answers. Three weeks before he passed he walked into a neurologist office. With our own research we had come up with Lewy body on our own! Finally the Dr solidified his diagnosis. Lewy body dementia. He remained in the nursing home. By the beginning of February 2019 he had lost more of himself. Not able to walk or carry on a conversation. He just sat there with a blank stair. A week before his death we had to wheel him into the neurologist once again. the neurologist would not let my brother and I come back with my mother and father to get more answers about what was happening to our father. this again was gut-wrenching as we sat and watched her father deteriorate before our eyes with no real answers and no help given. my mom came out of that office without a referral to a bigger hospital. I made her go back in and ask the doctor for a referral. We got the referral. Finally the referral we had been waiting for. 2 days after that we had major snow storms in our area so we were unable to take my father to the bigger hospital. By the end of that week we had to put my father on hospice as he lay in his bed dying. His body was done fighting this fight. We watched him crumble within a few months. Now looking back. The last two years of his life he was starting to show signs of LBD. He was more withdrawn, not into things he would normally be into, lots of movement during sleep (acting out dreams).
I hope and pray that there is more information found out about this disease. I have watched other people in my life suffer and die. This by far was the hardest one! My Dad was definitely a trooper. He did physical therapy two days before he died. They had to really help him move but he went there with no complaints! He didn’t come into this life with it easy and he didn’t leave the easy way. He was born crossed and dyslexic. He worked so hard for our family always providing for us even when times got really tough. I am so proud of him. Especially how he carried himself while on this journey in the end. For his memorial we donated the funds to a local community college that he attended as an adult to learn how to read. He is my hero ♥️♥️♥️
Jun 29, 2019