I know all about the frustration experienced by those suffering from dementia. I've seen so much of it.
My grandmother reached a point where she only spoke the Napolitano regional dialect. But once in a great while, the clouds in her eyes would momentarily part and she would say, in English, "Michael, what's wrong with me?" Then it would disappear as quickly as it appeared and English was forgotton. Along with everything else.
My father was a City of Stamford fire fighter who did electrical work on the side. In short, he was a working man, but still an old school gentleman. However he might have talked while working, at home or socially, he never used bad language in front of women, children, or in any place it might be deemed inappropriate. Man how that changed with dementia! He used words constantly I had never heard come out of his mouth.
Funny though, while he cursed out my younger brother who worked in Stamford and so was there every night on his way home from work, he only did it to me once. My brother had gone home and I said something that annoyed him. He said, "fuck you too Michael!" I replied, "hey! This isn't Robby. This is me! You talk to me like that again and that will be the last time I drive down here to see you."
He paused for what seemed like forever, but was probably only a few seconds, and said, "yeah you would do that. I'm sorry."
And he never did it again. He swore at my brother, swore something awful at George his caregiver, but never swore at me, no matter how far gone he got.
I understand your point about joy being possible. When I visit my wife's sister and I envelop her in a hug and she curls up against my chest and lets me hold her, sure I feel like I'm accomplishing something positive. As I did each night I kissed my dad and said, "goodby dad, I love you." Call me selfish but I have no wish to provide that same opportunity to my children and friends. I'd rather be dead.
Speaking for me now, not trying to provide comfort (I get how terrifying this all is), the whole matter hits a little too close to home. As you can tell from our experiences I am a stubborn little fool and sometimes that stubbornness is all I have, it endures.
Yet that is not a strength nor a weakness with this for it is a different type of struggle/challenge/experience. And it requires a radical form of trust that I am not sure I am willing to engage with again according to my history. But hey I will or will not have a choice in the matter.
