I just received the autopsy results for my husband, Coy. I may want to share more details later, but for now I'll quote one line from Dr. Boeve's letter:
"I know your challenges with Coy were enormous, but as we are aware, these challenges reflected the neurologic disease and not Coy, the person."
Throughout our long journey I often reminded myself, "It is not Coy saying/doing these things. It is Lewy!" (He had Lewy Body Dementia.) I think that is a critical distinction for anyone caring for someone with dementia. If your loved one seems changed, it is a neurologic change -- not one she or he can help, and not one you caused. For example, if your loved one was usually very considerate and now is extremely self-centered that is probably a result of the pathology in the brain.
Whatever the cause, you must still protect yourself from abuse and protect your loved one from dangerous behaviors. But I think it is emotionally much easier when you realize the enemy is the disease, not this person you have loved and who has loved you.
Of course, some people were just plain nasty all of their lives, and we can't blame that on the dementia that they developed later. I'm not trying to say that all older people would be delightful dears if they didn't get dementia. But if your loved one has changed for the worse since getting dementia, it helps to recognize that the new behavior is not a reflection of their true self. At least it helped me.
Are you still working from home? or do you go to an office now? What I am hoping for you (and all of us) is that good things are down the road. We just have to get through a rocky patch first.
lovbob
I'm so glad to hear your words again. You are at the end of the road I am just beginning with my husband. As I see it, you hated the disease, but never stopped loving your husband. That seems hard to me, but with your example, I will try to do the same.