I am posting this first message on March 31st, 2020.
We started this blog to share a bit about what is happening in our lives. Most of you know that David was diagnosed with Lewy Body Disease almost 7 years ago. This illness is a combination of cognitive impairment and Parkinson symptoms. He has lost most of his ability to write and words are more and more difficult to access. I can see that he knows what he wants to say but the words sometimes do not match the thoughts. He sleeps a lot of the time and has an active dream world. Often that dreaming is not let go of when he awakens and it is hard for him to keep the awake world and dream world apart. I try to orient him and that usually helps. Its not that the dream world is dismissed but that to function in this world it helps to keep them seperate.
We recently returned to Tennessee where we live in a continuing care retirement community from Florida where we spent the winter. David has lost the ability to regulate his body temperature when it is cold. He cannot handle it. His feet and hands turn blue as the body struggles to balance itself. So we went where it was warm. Returning here was disorienting enough and add in all the cororavirus concerns. We were both in a rather stressed mode and I was very busy trying to get us settled.
At one point he wanted to do something that I knew would not work. He was fixated on it. No amount of “reason” worked. And after the 4th round of it (hours of trying to communicate) I simply said we could not do it anymore. He would just have to accept what I was saying. I needed to get on with all the other parts of our life. He got very sad and depressed and became withdrawn. He barely wanted to come to dinner and I could see he was still very upset. He was not eating at all, just sitting there. Then he turned to me and clearly spoke in a calm voice that there was only one thing he could do and that was to let it go. He picked up his fork and started eating. There was peace in the room and my heart soared with love and gratitude that while this disease has taken so much from him, it has not taken this wisdom of letting go. There were no edges left between us, just this incredibly deep love that comes with opening to what is.
I do not know how often I will write on this blog. Time will unfold it. Love to all . Shoshana