Gary's FUB Journey
As many of you know, Dad was diagnosed with Frontotemporal Degeneration (FTD) in 2016 at the young age of 60. (
http://www.theaftd.org/)
FTD has affected his personality, ability to speak, make decisions, and the biggest kicker as of late is cognitive movement control. Unfortunately, at this time there is no treatment for this horrific disease.
As things progress over the next 18 months, a return visit in August confirmed that not only did Dad have FTD but also a variant called Corticobasal Syndrome (CBS or CBD) which is a disorder associated with FTD where the disease affects his cognitive motor skills that have many symptoms like Parkinson’s. Dad went from being able to walk independently in Jan 2018 to a walker by August 2018 and wheelchair bound by December 2018.
For a while Mom managed to keep him comfortable at home with Home Care nurse aids a few days a week. Unfortunately, his movement and cognition was declining faster than any of us were expecting. So his safety and wellbeing at home was too challenging; requiring more equipment and assistance for simple every day tasks at home. We also needed to look out for Mom’s wellbeing, no matter how many times she might say “we’re fine”.
After a lot of discussions and tears with family and friends over the Holidays, we made a tough decision to move him into a Memory Care center in January 2019. This provides Dad the professional 24/7 care that he needs. He is now 100% wheelchair bound, entirely dependent on others and his speech and language are slow and very limited.
Gary’s place, as of July 2019 is The Water of Excelsior. The staff there have been so supportive and providing the best care possible. There are weekly activities and visitors almost every weekend. Mom visits every day of course, making The Water of Excelsior their second home! It is a blessing and very comforting knowing they’ve found a happy routine together.
723 Water Street,
Excelsior, MN 55331
Oh, and might I add......Mom bought a handicap accessible van to make it easy to get Dad out on the town and enjoying life!!!
Thank you for reading this. Between myself (Lindsay), Emily and Mom, we plan to use this Caring Bridge site to keep friends and family updated on Gary’s Journey including the ups and the downs.
Many people ask how they can help, so here are some thought starters.
- Schedule a visit. Check out the Visit Planner list on our Caring Bridge, under Ways to Help. Or reach out to Nanci, Lindsay, Emily or Julie to arrange a visit.
- Leave him a message on Caring Bridge in the comments and we will share it with him. Messages and memories make him smile.
- Pray!! Pray lots and lots. This journey we are on SUCKS, and Dad’s faith and prayers from others will keep him and all of us strong.
- Donate to AFTD and advocate for more awareness and research for this this disease. (
http://www.theaftd.org/)
We are truly blessed with an amazing circle love from family and friends. This is where we find our strength.
Take this FUB!
Lindsay, Emily & Nanci
