Tuesday, May 24, 2016

Frontotemporal degeneration

The two year anniversary of Randy's Frontotemporal dementia diagnose came and went with very little fanfare. In fact I thought about it the day before and then two days after the date. So I guess that's good.

I went to the Frontotemporal Support Group at the Banner Alzheimer Institute two weeks ago and it occurred to me that we should not only share the date our loved one was diagnosed, but also how far back the actual onset of the disease began rearing its ugly head. I can now say my husband was showing signs as far back as 2010. So technically he's going on 6 years.

A year ago I met with a wonderful woman from the Area Agency on Aging. We recently had a follow-up assessment, and I was sadly aware that Randy would not have been able to sit with us as he had done just a year ago. Which makes me all the more mindful of the importance of documenting Randy's journey.
  • he is still happy and peaceful and content.
  • he still asks every day over and over to be taken to QT for a fountain Coke. 
  • yes, even while holding a QT cup full of Coke, and a 2 liter bottle in the frig.
  • he still reads the Michael Reagan book about his Dad President Reagan on his iPad
  • and the Book of John on his iPhone.
  • he loves telling everyone his new grandson is named William James Randy.
  • his only inappropriate behavior is introducing himself, along with a hand-shake, to total strangers, whether on a hiking trail, a walk around the block or in a parking lot.
  • so far everyone has been very kind. And he always asks their name too.
  • he will not let me cut his hair, trim his mustache, beard and finger nails. 
  • the painful removal of his toenails took two months to heal. But he never once complained.
  • his short-term memory loss is becoming more and more pronounced.
  • prior to his toenail surgery, I was lucky to get him to shower once a week. Since then, I've had to limit him to one a day. He's obsessed with taking showers.
  • God really does work all things for good. 
  • last week we took a road trip to Goldwater Lake near Prescott, Arizona.
  • sadly it will be our last road trip together. 
  • he does not do well when removed from routine and familiarity.
  • thankful to have captured these sweet memorable moments.
  • love this dear, sweet man with all my heart.

1 comment:

KathyAZ said...

Linda, thanks so much for sharing Randy's progress. Breaks my heart that your hubby is like a new person now, but I'm glad to hear he is still his loving self. I may have mentioned this before but when Randy spoke at church, it seemed I could consistently relate the most to his words and topics :)

Hope we can talk by phone again soon - and I want to know how it's going on the music CD sales? I've been learning a lot about online ads and would love to help! You have my number.

Now I'm going to look around and see how to receive these updates via email :)

Take care.... Kathy