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)

Saturday, July 14, 2007

Zoo

Grandma & Chase at the Zoo in 2002

At the Zoo in 2007

We took Grandma Cathy to the Zoo with us today. We met up with Ryan & his family and also took along Sam (Cousin Joes' wife). The Blank Park Zoo in Des Moines is the perfect Zoo for little kids... not too big, not too small. It was also perfect weather for the Zoo today! Cathy took my niece's hand and walked off quickly... so we had to keep a good eye on her all day. (Cathy is fast! It is like watching a toddler out in public somedays.) She was on a mission to get in & get out. (as usual lately whenever we go somewhere.) But we did get her to ride the train with all of us. She stopped and watched the otter with us also. (My favorite animal at the Zoo.) A few times she took off ahead of us... but we caught up with her as quick as we could. All & all it was a good day. Nice Memories for us & the kids again!

Saturday, July 7, 2007

Ticks

Cathy is now obsessed with Ticks. She is constantly itching her neck & behind her ear. I have looked at this "so called" ticks and I only see what looks like mosquito bites. In an attempt to show her I took a few close up pictures of the spots. I then showed her trying to explain she does not have ticks... but she still disagreed & continues to itch and scratch at these spots. She was putting alcohol directly on them. At one point she would just hold the alcohol over the spot and pour... then it would also run all over the floor. Since Aunt Charlene visited she has also started putting Dawn Dish soap on them. Charlene made the comment that she knew of someone who used to put Dawn on a cottonball & then cover the tick to force it to crawl out. (another one of those situations when we didn't realize Cathy was listening to us talk & she picked up on what we were saying) Since then Cathy will walk into the kitchen put some on her finger & spread it on her itching spots. Her skin is now dry, flaky, & reddened. I have been trying to explain to her why this won't help... but once again she doesn't listen. She doesn't argue either. She just looks at you & then walks back into the kitchen and does it again. We have all said, "Cathy, please stop doing that." But it hasn't worked. She keeps sneaking in and putting it on throughout the day. So today Rhonda & I thought we would be sneaky. We bought some handsoap that looked similar to Dawn & put it in the Dawn bottle. Hoping this wouldn't dry her skin out as much... Once again... not a very good idea! She was then washing dishes with it & we were afraid we would all get sick. UFFDA! Anyone have any good ideas??

Friday, July 6, 2007

Last Year


I found this photo of Grandma Cathy & Mia at the Lake last June.

Monday, July 2, 2007

Lake Arbutus





Location: Wisconsin

Cathy's Loves Camping! Her & the boy's spent their summer's at Lake Arbutus when they lived in Wisconsin. Brad loves to tell us stories of all the fun things they did their growing up. This is the 2nd summer they have had a reserved camping spot on the lake to leave their camper at. I couldn't wait to get the kids up to Wisconsin to make memories for them.

Usually Cathy is excited & eager to go over to the campground. But not this summer. If we don't mention it, she doesn't even think about it. And a few times we had to talk her into going with us. She had no interest in going along. Once we would get to the campground she would head into the camper & put in a movie. All the movies she has on DVD at the house... she also has on VHS at the camper. One trip she even forgot where the key was hidden to unlock the camper. And if you know Cathy, she was always very organized & detail oriented about things like that.

The kids & I built the campfires this summer... or I should say I attempted to. Luckily Grandpa Gayle came to the rescue after work.

The one thing that still gets Cathy excited is.... Ice Cream!! The campground has a mini shop that sells supplies &... ice cream! So we went on walks almost everyday we were there for it! And if we weren't at the campground there is a Yummy Ice Cream Shop in town too. Needless to say... I am now gaining weight just as fast as Cathy.