Dementia Support

My dad grew up in Hamtramck, a little predominantly Polish/Ukrainian city that's actually located inside Detroit.  He joined the Air Force, earned something like 3 masters degrees and received a PhD in the early 90's from Temple University.  He retired from the Air Force after the Berlin wall fell and communism in the Soviet Union seemed to be coming to an end.  (My dad's area of expertise was in economics, particularly in communist countries.)

Around 1995, my mom started complaining about my dad not finishing things that he was supposed to.  She felt like she constantly had to lean on him to get him to do his work.  (He was a professor at Judson College in Elgin, Illinois at the time.  He also seemed to pick on her a lot about words that she would use.  I remember one Christmas (probably '97?) they got in a big fight over whether you could call scissors scissors, even though there was only one of them that you were talking about.  My dad insisted it should be scissor.  They had a similar argument about pant/pants. 

My sister tried to reason with my dad, but he just wouldn't give in.  He felt that it was my mom who was being unreasonable.   There were other times that we'd have conversations with him as well and he seemed to completely ignore any argument we made and proceed full bore ahead with whatever he wanted to say.  We thought he was being incredibly rude and my husband grew to hate him, despite my protestations that this simply what my dad was like and that something was wrong.

My mom considered marital counseling and read several books that she hoped would help, but none did.  She kept saying that it seemed like something else was the matter.  She also mentioned that he was forgetting things.  So I started researching Alzheimer's and while doing that I came across a description of Picks.  It really seemed to fit my dad so I finally convinced my mom to get him tested.  I think they had a confirmed diagnosis by 2000, though it seemed to take a long time to get it.  Since my dad "looked" fine, I guess everyone but the doctor wasn't willing to say there was anything wrong with him.  My mom had to fight for disability and social security.

While they were testing dad they did an MRI or something along those lines.  It confirmed that my dad's brain was shrinking. What was really strange was that dad would tell us that that's what the doctor said, but he had no emotional reaction to it. He had always been a rather emotional type of guy and this was so odd for us.  I also believe that this is one of the key differences between victims of Picks and victims of Alzheimer's.  Its called "lack of emotional affect" i think. 

My dad lost his job (thank heavens!) and my parents moved to Colorado to be near my sister, so that she could help.  The following year I moved to Colorado as well since I could tell that my mom needed more help than my sister was able to give.

Part of our struggle has been convincing my mom to not let my dad do stuff.  Convincing her to stop letting him drive was like pulling teeth.  (Hmmm, I wonder what my mom will say if I get her to join this group.  ) It had been handy for her to send him to the store for a half gallon of milk.  It was a few minutes of relief from his incessant talking about Ukraine or the Urquhart castle or whatever his latest "theme" was.

For the first few years we were here helping, there was very little noticeable change in my dad.  We had moved out thinking that we would only be here 2 or 3 years--until he was put into a nursing home and my mom no longer needed help.  But we've been here 4 years now and my dad is only just now starting to show noticeable change month to month (before we could see things year to year, but even that was sometimes hard to note). 

Dad goes to Elderhaus one day a week for 6 hours.  He stays with me a bit each week and my sister takes him for a bit each week.  This gives my mom a much needed break.

My dad is now 62 years old, I believe.  His mother is about 83 and we recently had to move her from her condo in Florida.  Since my dad has no siblings, it falls upon my mom to take care of her as well.  She lives in a senior apartment center.

To the best of our knowledge, no one else in my dad's family, alive or dead, has or has had Picks disease (or anything like it).  There are no family stories of anyone getting strange in their old age, or even forgetful. 

I find the hardest part of having a dad with Picks is that most people don't have any clue what that means.  They keep asking how my dad is taking it.  They don't get that my dad isn't even aware!  I hope this group becomes a resource not just for people with relatives who have dementia, but for their friends as well, so that they can get a better/clearer sense of exactly what it is we're going through.