It is 9:30 PM, I am up, alone, the television is off, I am having my usual hallucinations of small animals running on the floor, and I feel lonely and abandoned. And this is normal for me, now.
In the beginning of this journey, I felt connected to life. I had friends that I saw on a regular basis and that I could see almost anytime I wanted to.. They were happy to see me and I was always happy to see them. Now, I am alone with the exception of my two loyal miniature poodles. It is good to have them, because if I see something and they don't bark, I know it is a hallucination!
Alone and abandoned is probable a normal issue for LBD patients or most dementia patients. As I retreat into the world as my mind sees it, I become more isolated from society, people, and reality. Even when I go to place with people I at least have a connection with, I am alone. They do not know who I am or anything about my background. Yes, we have polite conversation. But nothing substantial and nothing that would challenge my mind.
Last weekend, we went to dinner with my son and his family. One of my Daughter in Law's sisters were there and her husband and a couple of the grandson's friends. I told some sea stories to my son's brother in law and he suffered listening to me. AS we left, I picked up the tab. I had cash, but I could not decide if the money I had was sufficient to pay the bill. Yes I saw the numbers, but they did not compute. I used my credit card, but did not line out the tip portion so the restaurant could have charged me anything they wanted!! Again, I was not connected to life around me. I was alone.
The people around me do not know these things happen to me. Even my wife missed the issue in the restaurant! I told her and she will take care of any bill paying in the future. But, because no one knows what I am going through, they don't pay attention to me and in my mind, they don't care.
When I had friends, I made it my business to understand the issues in their life. Now that I am dealing with a disease that is not outwardly apparent, people just abandon me. I am a throw away person. Not interesting, worthless, and a burden on their time. No one comes to visit, no one calls, except my best buddy Jerry in Virginia. Hell, the fellow I played Ping Pong with, who has Parkinson's, does not even want to play Ping Pong with me anymore. He never calls!!
I am depressed. I know that. But, there dis little I can do about it. Another thing that drives me further into my own mental prison is when people do ask me how I am doing, and then DISCOUNT my issues by telling me how bad they have it! Gee, I am sorry that I infringed on your pity party.
So, I become more and more alone. And more and more unhappy with life.
If you have a LBD patient that you are taking care of, take heed. They are suffering from exactly what I am. Do something to help them relate to people. Break down their prison walls. Look at us as people with social needs, not as a burden on your life. Or, just put just in a nursing home and leave us alone!! Maybe that would be better for all concerned.