As you may have noticed, this blog is out of order. So our random thoughts and posts are in order of when we wrote them, but not in sequential order of how they happened. So it may be hard to follow. But at this point we just wanted to get our thoughts down. In the near future, we hope to switch to a new format that will help us put things back in order, so it will make a little more sense for someone that may stumble upon it.
But now that we've finally come full circle with explaining the process from pre-diagnosis to now, I thought I'd include some things that happened during the years long before the diagnosis. Clearly related to the disease, but at the time we had no clue. I hate how the word "dementia' is part of the FTD name. It's so misleading and people don't really understand how it's different from other forms. Near the end, yes they are all very similar. The confusion, memory issues, incontinence, immobility, the refusal of food...but the beginning is so very different. Different than most diseases people have seen.
I'd say a big turning point was in 2001, around the time of 9/11. It seemed to be the start of a big depression for him. It was gradual, and we eventually got to the point where he wanted nothing to do with anyone. Particularly my mom's family. The sweetest, most caring and kind people you will ever know...and now he held an irrational grudge over them. He wouldn't let them over the house for holiday or family dinners, and he wouldn't attend when we would move the event to another household. And since he went back and forth between the silent treatment and insane and crazy outbursts & rage, no one wanted to confront him. We tried to pretend everything was normal. How ridiculous is that? But he was not someone you ever wanted to start a confrontation with, especially with the way he was now.
During the holiday season of 2003 (a full 10 years before diagnosis), we started prepping him that I would be hosting Thanksgiving that year and that we really wanted him to come. I don't think we got through to him. But he ended up coming. It was awkward, and we all tried to make polite conversation with him. He left the room and sat in the kitchen alone, and was silent the rest of the night. So we left him alone.
After he had left, we found a book left in our bathroom. It was a new sports/reference type book. On the inside cover it was addressed to my husband, and signed "your bud" with my dad's name. Talk about unusual. I didn't think my dad even knew how to shop. My mom took care of all of that, and I don't think giving gifts was really on my dad's mind. It was always just handled and he was just always too busy. So this was just weird. And a very unusual and personal thing coming from him. To give some background, my dad always felt close to my husband. My husband is a person that can talk to anyone and make them feel comfortable. They had a lot of the same views, and he was easy to talk to. Even when he shut everyone else out, he didn't seem to do it to him. So this seemed like a weird cry for help.
A few weeks later we received a card in the mail. It had no return address and it was addressed to my husband. The writing on the envelope was chilling. It looked like something from a psychopath/serial killer. Like when you cut letters out of a magazine and they're all different sizes and fonts? But this was hand written to look that way. It was even whited out in sections, and re-written on top. The card on the inside said "Christmas is a time for being with family" and it was not signed.
I was kind of terrified for awhile. But the more we put things together and researched the handwriting, we're certain it came from my dad. If you've seen from prior posts, he was meticulous. He would never white-out on a card and then send it anyway. His writing was even and perfect, as if he used a ruler all the time. This was so unlike him, and obviously disguised on purpose. Another cry for help.
But it's hard to help someone that made things so hard and refused us when we tried reaching out, any time we tried. Little did we know you just can't get through when it's a sickness like this. His brain was already changing, at least a full 10 years before we finally figured out why.
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