Bittersweet

"Fluctuation:  one feature that distinguishes DLB from other forms of dementia is clear fluctuations in an individual's attention and alertness."  Mayo Clinic Patient Education

There are aspects that are difficult at both ends of the spectrum of lucidity in Dementia with Lewy Bodies.  When he is not lucid, that is difficult because he will lash out against his situation and deny that he has any need for assistance.  When he is lucid, as he was yesterday, he understands his situation so well that it is sad.  Yesterday, he acknowledged how much he is declining, and he told me to put him into hospice as soon as he needs it.  He is not ready for hospice yet (I called them early on and was told they take people when a doctor says the person has about six months to live.), but it was a tender moment for us when we could acknowledge the toll this disease is taking.  This does not mean he may be that lucid about his reality in the next conversation.  It had been just the previous conversation where he had told me I needed to get the house ready for him to come home.  As caregivers we ride a roller coaster as we interact with the care receiver in his/her various states of lucidity.  What I try to do is just listen and empathize with him -- however lucid he is.  When he is not lucid, I may reflect back to him a bit of reality:  such as, "Remember.  The neuropsychologist said you needed assisted living now."  It is a balance between not arguing (which is pointless and frustrating) and not condoning their non-reality.