OK, I am not Earl Pitts! But there are two things related to LBD that cause me to get angry. First, even though Lewy Body Dementia is the second most common form of dementia, there are very few local support groups. You may be thinking, why don't YOU start one. I am the one who needs it!! I am no longer capable of taking on that level of detailed organization. Not to mention tax exempt status and all the legal issues. I retired from my job because I could no longer do that sort of thing.
Second; When a Senior Citizen is getting ready to move into a Continuing Care Retirement Facility, there are very few individuals of businesses that can help you down size, check out facilities, provide financial counseling, or even give you the latest inspection reports from the facilities you are looking at. No, instead, we are operating in the dark!! Trust, me, in this lost community of Pensacola, there are no helpers available. I have done exhaustive research on the Internet and finding CCRC's is difficult. Finding someone to provide you any information is impossible.
So, those of us who are LBD patients and our care givers are on their own as we search for facilities, check out financing, and try to sell valuable furnishings that will not fit in our new lifestyle. Did we select a great community? Is the entrance fee fair? How did the Memory Care unit do on it's last inspection? I know what the community we chose told us. But, is that their view or an objective agencies view?
As my generation ages, services like this will be more and more in demand. And we can't be the first people who want this type of help. Yet, here we are, out in the dark, groping for a direction. And you know how much I don't like the dark!