Our Families Journey Caring for a Mom with FTLD-MND

It is important to know as you read this journal that this was Cathy's life post diagnosis...

To know Cathy Truly you must know that she was: a Wife, Mother of 3 boys, Grandmother of 9, Sister, Niece, Aunt, Daughter, and Friend.

Our families journey began with Cathy's diagnosis the week of Thanksgiving 2006, Cathy was 52. Her original diagnosis was Pick's Disease/FTD. Looking back her symptoms most likely began 3-5 years before diagnosis. Most of the Doctors have told us that from onset of symptoms to death... the average timeframe is 4-7 years. (sigh) In the end her brain autopsy showed Frontotemporal Lobar Degeneration with Motor Neuron Disease FTLD-MND. (Basically... Frontal Lobe Dementia with Lou Gehrig's Disease)

Tuesday, February 20, 2007

Yellowstone





Brad's vacation this year was in February. (Not by choice... as delegated by his employer/Union Rep. through the railroad... he is at the bottom of the totem pole this year for seniority.) I wanted him to enjoy his time off. He has been so troubled with his Mom's illness and being far away from her. So I devised a plan to find a good vacation location... in February. It is also important to note that Brad has never flown, and I believe he intends to keep it that way! (Cathy does not fly either... like mother, like son) A good friend of mine told me about a trip she had taken last year to Yellowstone. They had gone snowmobiling. So I researched it & it seemed to fit. Brad loves the outdoors, loves snowmobiling, & had not ever been to Yellowstone. And I know that all of our free time & vacation time will be in Wisconsin over the next few years... however, it usually is anyways! :)

We planned on taking his parents with us also. A last trip with his Mom. But... after her trip to Colorado with Gayle, Gary & Barb, and Rhonda & Larry it was clear that she was not able to travel anymore for many reasons. She was afraid of driving, afraid of heights, uncomfortable in places she was unfamiliar with, etc... So we asked Gary to come along. It became a guys trip + me. Gayle, Gary, Brad, & I "drove" to West Yellowstone. It was an adventure,(note to self: do not allow men to eat things that may potentially give them bad gas while traveling in the same vehicle with them!)& we all had a Great time! I would highly recommend this trip!! And if you ever go I would also highly recommend Ace Snowmobiles for renting your snowmobile. They were a Great family ran business!!

Cathy stayed with Ryan & his family that week. We thought it would be a good chance for them to spend some time with her also. (This was the week that she ate almost an entire cake one night!) She was a bit restless while she was with them. Ryan said at one point they were driving down the interstate & she was afraid of the semi's around them throwing tire treads at them (or whatever those things are called). She also frequently commented on his speed & the speed limit.

I hope it was a good break for Gayle, we worry about the stress level he is under. So many decisions to make & caring for her is trying at times.

Hopefully someday we will be able to take this trip again!!