I'm sure it's impossible to pinpoint when dementia "starts" for a person. I think most people start counting from a particular event or situation which smacks the caregiver or family in the face that says "something is REALLY wrong here" and that the issues are more than simply just aging. And that event for me was the death of my grandpa, Charles Mitchell, on March 25, 2007. He had passed away while my parents were in Florida. And my Mom refused to come home to attend the funeral.
At the time, I was not aware of all the factors that had gone into her decision not to go. I just thought that it was the most ridiculous thing ever that she would not make the effort to come back. It made no sense to me, and I told her so. It made no sense to her brothers and sisters either, who were as confused as I was, and a couple of them told me so. I tried to plead with my Mom to come, and she just shut me down with excuses so ridiculous it was comical. "Daddy has to golf that day," she said. "Daddy has to wallpaper the bedroom." "We have to go to Costco." "I am too old to make such a long trip." "We can't afford the airfare." I was expecting "The dog ate my homework" next. But never once did she mention the "real" reason she had decided not to come, which I didn't even find out until a few weeks ago.
Truth is, my grandpa had dementia and pretty much spent his final year wasting away in misery in a nursing home. He became a very bitter, angry man late in his illness, which is a side of him I heard about but never experienced first hand. I'm a little embarrassed to admit that late in his illness (and my grandma's too) I just got so scared to see him that way, so scared that I wimped out of going to see them. Part of me didn't want to believe the horrible stories I was hearing about things he'd say to his children, and how poorly he treated them. Suspicions, accusations, just horrible, horrible things. It scared the crap out of me, because the only "Poppy" I knew (and cared to remember) was the one who would lovingly wrestle me into his lap as a kid and ask me for a "squeezer" (which was his word for a big hug).
My Mom would often tell me stories of all the horrible things she would encounter when she went to visit him and my Grandma. But she never said anything about it bothering her to me. She seemed to be well aware that it was the disease talking, and didn't seem to be taking anything too personally. I was wrong.
A few weeks ago in a chat with my Dad, he admitted to me that she didn't come back for the funeral because she was so angry with him for saying all of those horrible things during his illness. She took it all personally, and resented him, big time. She had never mentioned this in her laundry list of excuses. And had she, I think I might have at least understood a little better. It's easy to say that now, of course.
The funeral itself was one of the most difficult experiences of my life. Not because I was overwhelmingly close with my Grandpa (I loved him dearly though), but because I was so humiliated that my Mom, the oldest of the 7 children, was not there for her mother, and for her brothers and sisters. My brother and I went as overboard as we could to compensate. I was there for the entire visitation, brought tons of food, tried to do anything I could think of to show my Mom's family that even though my Mom didn't think this was important, I did. It was excrutiating to have old friends, neighbors, and distant relatives come up to me and ask "Where's Linda?" It was hard to respond with any of the lame excuses she had given me. It was all the more embarrassing because my 3 cousins from Florida ALL made the trip, regardless of the fact that it must have been a tremendous financial burden to them.
I know now that my Mom was grieving, just handling it in a much different way, and was (mentally) ill while she was trying to handle it. This event was the first big red flag that made us (me and some of our family members) take note and realize that something was wrong with Linda. Something MORE than just aging. And once again, I think deep down somewhere in that head of hers SHE realized that something was going wrong. How scary it must have been and must still be. With every passing month, week, day after that point it was clear she was headed down the same path as her parents. Even as she continues to this day to deny it (and deny her parents ever had any dementia problems at all), I'll bet somewhere in there she knows what is happening and is scared to death.