Something’s Wrong With Me!

On the morning of July 28, 2020 my father’s life came to an end after a brief battle with Lewy body dementia. The life of an otherwise healthy, vibrant and youthful 85 year old was snuffed out like a candle in the wind.

My dad’s story began a few years ago when violent nightmares would periodically take hold of him. My mom tells of his yelling and lashing out in his sleep, often physically attacking my mom with absolutely no awareness. My mom would wake him up and ask him what was wrong. “Someone is chasing me,” was always the typical response. It was only after his diagnosis that we discovered that what my dad was experiencing was called REM disorder, an early symptom of LBD that can often manifest itself years before any other symptoms begin to present.

About two years before his diagnosis, we began noticing what we assumed was normal age-related changes for a man in his 80s. At first, it was little things like forgetfulness with the DVD player or forgetting his favorite channels on cable. I recall making a list of his favorite channels to leave by his remote. But soon it became more serious. My mom was noticing his judgment while driving was becoming impaired. Mom encouraged him to give up driving. For my independent dad who drove all his life, this was a serious blow he was not ready or willing to come to terms with. After almost getting into a serious accident in 2017, he finally came to terms with his situation and turned his car keys over to my mom. He never drove again.

By the summer of 2019 falls started to become a more normal occurrence. My dad struggled for years with neuropathy and we wrongly assumed it was to blame for his frequent falling and imbalance. A big change was taking place in him physically as well. His gait was slower and becoming shuffle-like, his posture was becoming stooped, he was losing weight, and his eyes were beginning to have a vacant look about them. By this time normal, simple everyday things were becoming a huge effort for him. His speech was becoming garbled and he struggled to find the words to complete a sentence. He also seemed to be losing interest in things that used to bring him so much pleasure.

My dad recognized himself that something was seriously wrong. “Something is wrong with me. I don’t know what it is, but I can’t function” was what he would often tell my mom.

By the fall of 2019, dad’s condition was becoming very obvious. A CAT scan revealed mild cognitive changes but we knew there was more to it. He was beginning to suffer with hallucinations, paranoia, restlessness and sleepless nights. He needed help shaving and dressing. By February 2020 he was sent to another neurologist who diagnosed his condition. Until then we never heard of Lewy body dementia. We were told he could live this way for many years.

In May of 2020, at the height of Covid-19, he was sent to the hospital for a strangulated hernia. The hernia issue was corrected, but unbeknownst to us, the combination of the hospital stay, being away from his family and surrounded by strangers, the medications, contributed to his condition being ‘sped’ up to the point that by the time he came home, my dad was completely bedridden. Our hearts were broken to see this once strong, vibrant man reduced to a feeble, helpless shell of himself. He was now sleeping more and more and eating less and less each day. The visiting nurse recommended we put him on hospice care. On July 24, 2020 my mom and I fed him him some chocolate pudding and some ice cream. By now he could no longer eat any solids or drink any liquids without choking. He slipped into a semi coma later that day. We called the nurse who advised he had now “entered the dying process” which could come within a day or so. We called for last rights. We gathered all our family around him and kept vigil around the clock for the next few days. We all took turns saying our goodbyes and telling him how much we loved him. We all gave him our permission to “go rest.” Everyone except my mom. My mom could not bring herself to let him go. On the morning of July 28, I woke up next to him and could hear his shallow, barely there breathing. I knew he was holding on for my mom. I went to her and told her she needed to tell him it was okay to go. After much reluctance, she spoke to him softly telling him that it was okay to go and see his mom and dad and grandmother. My mom told him she would see him again someday and then they would never be parted again. With those words at 10:41 am, my dad opened his eyes, took two breaths and peacefully passed away.

Stephanie Miceli

July 30, 2021