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, November 20, 2007

"Today was a Good Day"

We were sitting on one of the couches tonight in the Deer Shed & Cathy just blurted it out... "Today was a Good Day." That pretty much sums it up.

Luckily Cathy handled the no water situation pretty well... no toilet water coffee as far as I know. The kids were pretty restless this morning & just about the time that she was getting frustrated with them Rhonda showed up to take her out to Lunch. She didn't argue one bit & off to McDonalds they went for a Double Cheeseburger... her favorite. Rhonda also took her to Wal Mart per Gayle's request & got her a new suitcase. Then they headed to Deer Creek and she got Cathy a new Cardinal decoration for Christmas, Cathy LOVES cardinals! ( I forgot to add that this morning Brad caught her out by the burn barrel with her suitcase... she was planning on burning it since the zipper was broke.)

Brad had to head home this morning and work... hopefully he will catch a train tonight & be able to head back up for Thanksgiving or at least to see Toby & family for the weekend. We were all sitting around this morning & Cathy looked straight at me & pointed and said, "Get a job!" ??? I just laughed & said, "You think I need to get a job??!!" She burst out laughing & shook her head yes. I said, "Are you tired of hanging out with me?" And she said, "Yep." Brad thought it was funny.

Tomorrow is her follow up Dr. appointment with Dr. Loepfe in LaCrosse. Rhonda is going to stay with the kiddos for me so I can take her to her appointment. Hopefully she will let them repeat the testing again... I have tried not to talk to her about this appointment, hoping that if she isn't thinking about it she won't worry about it as much.

Earlier today the kiddos & I went down to Hoyers & made puppy chow... yummy! Cathy stayed at the house with Gretchen & her kids. When I got back Gretchen said, "she had a naked spell..." Oops... I had forgot to tell her about when Cathy does laundry... sometimes it just strikes her that she needs to wash her clothes... she strips down to her underclothes & heads to the laundry room. She did that today & it shocked Gretchen a bit! I read somewhere that they tend to get attached to things, even wearing the same thing until it has holes in it. Right now Cathy is attached to a red sweater that Aunt Charlene gave her & a Fleece top with a picture of a deer on it. She also insists on wearing the same 2 pairs of jeans... that are too small for her... but she refuses to wear the bigger size (Rhonda & I bought her some a few months ago & she got really angry with us... I am thinking about getting a pair again & just cutting the tags out & telling her they are the same size). I guess us girls are all the same... never happy with the size we wear!!

We went down to Barb & Gary's for the annual Prime Rib night tonight... Barb cooks Chris's recipe from the Cottage... it's top secret, I guess KFC & the Cottage can work together on this one (Barb & Gary own the KFC up here)... too bad Chris can't be up here to enjoy it with us!! Cathy did pretty well at their house tonight. She helped set the table but only set for 5 people when over 20 people were coming. After supper she headed down to the Deer Shed. She sat between me & John. John has been a family friend of Cathy's since he was a little guy. Cathy's family land up here has a gravel pit on it & John and his Dad worked the gravel pit, there is more history to all of that, but basically we will just sum it up by saying they are good family friends. John can always make her smile. And it was sitting by him tonight that she said, "Today was a Good Day."

No comments: