Monday, December 6, 2010

Caregiving.Com Holiday Party Week Pt 1

Agh, there is nothing more annoying than a downed internet when you want to be blogging and yet that's what I had to deal with this morning. The internet was still not working at my boyfriend's and I promised to wait around in case his new TV comes while he's at work today ... sadly I couldn't even try to fix whatever might be wrong with the internet either since it's the apartment upstairs that has the router. Don't worry, he's not stealing someone’s internet. It's his sister/the family business’s network which is based out of the apartment above my boyfriend’s place.

My dad became noticeably different several years ago. He has been diagnosed for almost 2 years now, so I’m guessing it has been about 3, going on 4 years now that my dad has been alarming different.

One of the first things we noticed was that my dad began to tell a couple of stories over and over again. Maybe since we were always around him it was just the most annoying and so, the most obvious habit. Anyway, aside from the repetitiveness being annoying, these weren't very appropriate stories either - the two main ones consisted of when my dad’s parents died in a car accident and the other was about some fight my dad got into when bartending. You could try to change the subject, tell him to stop, remind him these stories weren’t, you could try to talk over him, make him walk away, etc. ... but he'd tell that story, whichever one it was, all the way through, sometimes even starting over from the beginning if you had been successful in changing the subject. He could also see a person he had told one of these stories to the next day and my dad would start to tell it all over again, word for word. It got to the point, where my mom, my sister or I could finish the story word for word with him.

For work, my dad took care of the grounds for a school system and he was asked to take some time off due to the fact he was apparently leaving and going to stand in a shop. He’d just stand around and watch people there instead of being at work where he was needed. He also made some inappropriate comments to kids, like asking one overweight girl if she was pregnant and asking a father who had, I believe, a daughter of Asian descent if the girl was adopted. He’d ask about money a lot too, for example how much my friend’s apartment cost her. Although these things could be appropriate in the right time or place (ok, not asking a teen if she’s pregnant...), these were more the ways my dad would start the conversation with them – a very intimate question right out of the blue to (often) strangers.

Even a family friend’s sibling, who we saw so infrequently he was more like acquaintance, asked our friends if everything was okay with my dad because he didn’t seem like himself.

Initially, my dad was diagnosed with depression - get him on antidepressants and exercising. Even an Alzheimer’s doctor in Philadelphia thought this was all it was. We had taken him there because the stories my dad mainly told were from when he was about 20ish and we thought maybe he was having problems with his memory if he was so stuck in that time period.

However, it was quite obvious to anyone that knew him that simply depression was not the case. He and I even went down to Florida to see his long time friend who had known him since high school. We figured, if my dad wanted to talk about that time period (his parents died when he was in the middle of college, which he never graduated from because of it), that maybe it'd be best if he was with someone that could exchange stories more with him like his friend could. A night or two with my dad and even his friend was saying my dad was totally gone ... and he didn't know if we'd see him again.

It was about 6 months after, in February of 2009, that that we finally got an actual diagnosis. After lots of testing, including an MRI, we were told by a specialist at the University of Pennsylvania that my dad had frontotemporal dementia. Although I desperately wanted some answers (and depression certainly wasn’t it since it wasn’t the right one), this was not what I wanted.

He won’t get better? This is going to get worse? My dad’s going to die from this?

Only after the diagnosis and as my dad has progressed with this condition have we been looking back and noticing subtle changes or events which might have been symptoms earlier one:

- Maybe that’s why he used to crank the heat up until we were all pouring sweat in the car and he seemed totally unphased?
- Maybe he really didn’t know what he was doing when he put that thing together and that’s why it keeps falling apart?
- Maybe that’s why he was always so quick to finish dinner?
- Maybe that’s why he seemed so unaffected and unconcerned when my mom had her heart surgery all those years ago?
- Maybe that’s why his driving was so weird – speeding when we were in no rush and going below the speed limit when you needed to get places?
- Maybe that’s why he hadn’t said goodbye or "I love you" when we were leaving anymore?

Here are some sites I have found valuable to find information about this condition: