Two things happened yesterday that I would like to report. First, I had a planned appointment with my GP. She is a very caring individual that makes me feel like I am her only patient and that she is genuinely concerned about my health. When we left that appointment my wife commented; "You always smile and seem uplifted when we leave Dr. Laenger's. My reply was; Because she cares about me and listens to me and my concerns.
Second, amy wife was making telephone calls to the ladies she will be the Discussion Leader for in this year's Bible Study Fellowship group in Pensacola. One of those ladies called has a husband that has Lewy Body Dementia. They began to compare notes on their husbands. It seems that ladies husband suffers the same internal turmoil and frustration that I do. She also said, according to my wife, that he gets frustrated when people don't believe he is ill. Imagine that. Now, maybe, she will understand my frustration and anger. Until NOW my wife has never had contact with a LBD patient with the exception of me. So, she had no understanding of the issues I endure. But, if another person, out of her circle, has the same or similar issues, then she has someone to compare notes with.
LBD sufferers and caregivers live in a personally imposed vaccum. Since there are few support groups, my wife, and I suspect other caregivers, have no one to compare notes with and therefore they have little understanding of what their loved one is dealing with.
Sometimes, loved ones don't want to believe the complaints of their patients. Why? Because they don't want us sick! But, if they know and interact with others caring for a LBD patient, the understanding will increase and maybe, we sufferers will be believed. I can only hope.