I mean the person still IS who they are only ...changed. Looking at my BIL with stage 4 Alz. I still see my BIL he's not someone different. It's sad but he is still here body and soul- his mind is somewhere else, but he still is my BIL not a stranger. I might be wrong about all this it's just that if my husband or myself would get this disease I would like to know that we would still be Dad, Mom and not the words, "That's not Dad, that's not our Mom anymore." Guess this thought came from reading the poem The Long Goodbye.
As I neared the place of burnout I questioned everything I ever thought I knew about my mother, our whole past was coloured by her needy, helpless present. Since I don't care for her any more but merely visit I am able to think of her as my mother once again, but I think that is in a large part due to my willingness to ignore the obvious and not probe too deeply to see what parts of her, if anything, still may be hiding beneath the surface.
In her insightful book, "Loving Someone Who Has Dementia" therapist Pauline Boss calls the changing nature of the relationship "ambiguous loss." The loved one is gone in very significant ways, and yet the loved one is still present physically. It is not time for the funeral, but there is definitely mourning going on. We loose our loved one that we knew little by little.
Generally we are not talking about changes like incontinence or mobility issues. We are mourning that the courteous, thoughtful person we married is now exceedingly self-centered. And we shake our heads sadly and think, "That's not my sweet husband."
I understand that as "caregivers" we need to hear from one another to put things in perspective and let emotions at time just take a breather .
Think I'll check out that book, sounds like a good and important read.