I may be selfish and self-centered. It is hard not to be when you are suffering from any incurable, progressive, life ending, disease like LBD. Yes, the end can come slowly, but it IS coming. And sooner than it would have if I did not have LBD; at least in theory.
I also know family and friends have their own lives. Their jobs, families, hobbies, children, and home maintenance, to name just a few things that keep them from visiting and calling. My Navy career took up the majority of my life from 1969 to 2010. I neglected my family, son, parents, other relatives, and friends to do what the Navy needed me to do. I volunteered for the tough assignments, rode deploying ships, worked late to make sure my equipment worked, and avoided anything that looked like easy jobs. So, I do understand their position.
Just the same, I feel abandoned and neglected much of the time. Are these feelings valid on my part? I guess that depends on which side of the issue you are on. I do not expect or deserve 24/7/365 care, visitation, and coddling. But, once in a while would be welcomed.
So, that is the end of my self-centered complaining for the moment. LBD IS a lonely disease. And I have written before that I believe living in Assisted Living is better for the spouse of the Dementia patient because she would get the good times with me and I could be alone, in the care of the professionals, when I am being difficult. But, she has to bee there to share the good ties or my theory is wrong. I believe she will be.