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.

Appreciate your thoughts .
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.
Helpful Answer (3)
Reply to 1111mary

I guess if my behavior changed drastically with dementia I'd hope my loved ones understand that "that's not Jeanne anymore." That if I were in my right mind and if I were in control, I would still behave as I did when I was healthy. I would also hope (fervently) that they did not abandon this changed person, and that they hung on the relationship built in the past as long as that was feasible.

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."
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Reply to jeannegibbs

I think that people are saying "that person is not ACTING like my Dad, my Mom, my Brother, my Sister." They know that the person is still, in body, their Dad, Mom, Brother, or Sister, etc. It is easier to say "That's not my _______ anymore." then to give a long drawn out explanation of your loved one's new and unusual behaviors/comments every time someone ask about your loved one. Most people understand what you are saying and they immediately know that you do not need to (or will not) explain your situation as that phrase "That's not my ____________ anymore." says it all.
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Reply to DeeAnna

I think the closer you are to someone and the more hands on as a caregiver the more you see the pieces that are not there... the modest mother who needs you to clean her after a bowel accident... the dignified church elder who curses like a sailor and propositions his daughter for sex.... the brilliant business woman who can't figure out how to use the telephone... and more.
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.
Helpful Answer (9)
Reply to cwillie
jeannegibbs May 31, 2018
Good explanation, cwillie!