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I’m raising money for LEWY BODY DEMENTIA ASSOCIATION INC - please make a donation by visiting my FirstGiving page:
Lewy Body Dementia is the disease that my Dad was diagnosed with on November 15th, 2010. LBD had been painstakingly taking my father away but on this day our fears were confirmed.
Piece by piece, memory by memory. He lost his capability to complete basic tasks, no longer able to read his papers, play solitaire on his computer, taking his daily walk to the convenience store… He loved getting up and going to pick up the papers. It gave him purpose. Completing sentences was at times difficult, remembering places and objects.. had him struggling. Cooking soup, trying out new recipes was a frustrating mission. Not knowing where the bathroom was, sometimes not knowing what to do when he got there. Leaving the water running is the washroom, leaving his false teeth in the sick. Putting used tissues in the hamper. Wondering around the house, where is Gloria? Didn’t want to take Boone, the dog out for walks anymore. Planting his garden was a demeaning experience. Measuring the distances between the plants was impossible. He got angry. I think he got scared too. The most painful for me was going outside with him to feed his birds.. he had such a hard time yet he was still trying to tell me how to do it. Why, why does this happen?
Oh and then there were the hallucinations. Friends we would to call them. They became a part of the family. Always present and sometimes quite annoying. Many conversations took place between him and them. He would see these people as you see me, or your children. They were real and they never left. It was just amazing yet terrifying to see how this disease took complete hold of his mind.. Creating life like visions that had voices, moved from room to room. I do thank God for sparing him terrifying hallucinations that some LBD sufferers go thru. Some being so frightening that anti- psychotic drugs are necessary. I often ask myself how long were they with us and how long did my Dad keep this secret? My heart aches. He was going thru this alone for how long.. how afraid he must’ve been. Oh Dad, I am so sorry.
Night time was a difficult time as well. Sleeping was interrupted constantly. We are not sure what would wake him but he would come down stairs asking what should he be doing. Near the end he was always going to work. He never lost his GM days.. I’ll never forget him coming down, in his underwear all set to go. So innocent.
A second core symptom of LBD is Parkinson’s disease. Dad started to get the shuffle. His back was beginning to hunch over, hands would shake. Cutting up his meat became Mom’s job. Eating soup was becoming difficult. Not only does this take your mind but also overpowers your body. LBD owns you. Entirely.
Thankfully, unfortunately we are not sure how to say it, Dad’s life ended on May 21st, 2011. Yes it was before LBD took him. It would’ve been a long and excruciating demise to witness I’ve read. Eventually he would become a body. Like Alzheimer’s you, as I like to call it, just rot away. Left to sit or lie and wait for death. This is no way for a human being to die.
August 6th would’ve been my Dad’s 75th birthday. We were going to have a party with friends and family. Instead we’ll visit him at the cemetery.. have a beer with him, bring some fresh flowers… and this email and link will be an early present. Maybe some of you can donate, if not please say a prayer. A cure needs to be found..
I miss him so much, so very much.
Please send my page on to anyone who might like to donate!
Many thanks for your support.