My father was the greatest person I have ever known. He was kind — I can never remember him saying a negative thing about anyone. He was funny — not in the most obvious way, but in the best way imaginable. He was incredibly intelligent — he graduated from Notre Dame with a degree in Electrical Engineering. He was the most loving husband anyone could ever ask for. He still called my mother his girlfriend and considered himself the luckiest man alive to have met her. But most important of all, he was the most incredible father I could possibly imagine having. Nothing mattered to him more than his family. He was never as happy as he was when we were together.
My father suffered from many health issues over the last 10 years. Due to poor genetics, he suffered from vascular disease and had to undergo more surgeries than I can count on my hands in a 4 year span. Somehow he managed to make it though them all….even his double bypass surgery. Many of these were considered “emergency” surgeries, and there were many hours when we sat in the waiting room begging God to get Daddy out of the ER and back to us in one piece. Somehow, he always did.
We knew we were blessed and lucky to still have him with us. Though he had become weaker as a result of the trauma his body went through, amazingly, he was still as sharp as ever. We marveled at the way that after everything, he was still the incredibly intelligent engineer we were so proud to call our Father.
Slowly, about a year and a half ago, that began to change.
It wasn’t so obvious at first. He would forget what he was saying mid-sentence, or get somewhere and realize he hadn’t brought something he needed. I know these are things that most of us do on a daily basis, but my father never forgot anything, which made it alarming to those of us who were closest to him.
The biggest sign was his sleep problems. At first, my mother was the only one who really ever witnessed them. For the last few years, he would wake up in the middle of the night and act out whatever it was he was dreaming about. At times, he would be terrified, and occasionally even aggressive.
Finally last summer I begged my mother to take him to a sleep doctor. That began a long process of testing which eventually led to a neurologist. We were terrified to hear the word Alzheimer’s, but at the same time, we were sure that was the answer. In late November of 2009, almost 6 months after testing began, we finally got our answer. At first were relieved to find out that we were wrong – Daddy didn’t have Alzheimer’s. We weren’t relieved for very long though, because what Daddy had was Lewy Body Dementia.
Though widely unknown, even to those in the medical profession, LBD is the second most common form of Dementia behind Alzheimer’s. Approximately 1.3 million Americans suffer from this horrendous disease. There is currently no cure.
Most simply stated, my father suffered from symptoms of both Alzheimer’s and Parkinson’s disease while my family could do nothing but make him as comfortable as possible and pray. He hallucinated, lost his short term memory, had night horrors and acted them out(this is known as REM sleep disorder), didn’t realize his home was his home, and most devastating of all, didn’t know who my mother was. In addition, he walked with a shuffle, became extremely stiff, slept almost all day long, and fell frequently. It was one of these falls which finally resulted in us taking him to a nursing home, where he only stayed 7 days before being transferred to a hospice.
After 6 nights in hospice, my father died on June 9, 2010, less than 7 months after being diagnosed with LBD.
One of the hardest parts about my father’s illness was knowing that I was completely powerless to do anything about it. I am not a doctor or a scientist, and unfortunately, in this lifetime, I will not ever be able to discover a cure for these horrific diseases. I refuse to settle for just doing nothing though, so the least that I can do is support those who can.
Sep 01, 2010