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)

Wednesday, November 14, 2007

"I got my Flu Shot!"

Well.. it was another one of those interesting days...

Today started out ok. I had my yearly px at the Dr. today and Cathy tagged along. She really likes Dr. Carlson in Story City & was happy to go with me. While we were there I asked about getting her Flu shot (I can get mine at work). As we sat down in the waiting room Cathy started to pull her sleeve up... she was anxious about getting the shot... I explained we needed to wait until we were in the exam room. Once we got back to the exam room she started to take her sweater off, she had her arm out & was about to pull her sweater off over her head before we even got the door shut... once again I stopped her and said we had to wait a bit. While we were waiting for Dr. Carlson, nurse Cindy came in and gave Cathy her Flu Shot! Thanks Cindy!!!

Brad took Cathy to Wal-Mart this afternoon... her favorite place to go. They picked up a bird feeder for her & more kleenex. She grabbed two bags of chocolate chips & said, "Cookies." (She used to make lots of cookies.) So when I got home with the kids after school Brad was baking away a storm in the kitchen! Just as he sealed the lid on the cookies he had just baked she grabbed the container & took it down to our entry to put with her stuff to take to Wisconsin. Brad said, "Mom, I didn't make those for you to take with you! They are for us to eat here!" She just laughed & brought them back up... I am sure we will end up taking most of them with us Saturday when we head up for Deer Season/Family Thanksgiving.

Supper time was a bit chaotic. I had the chicken baking in the oven & the kids coloring crafts at the table. Tracy called to chat & I went downstairs so I could talk to her about Cathy out of her earshot... I was only gone 2 minutes & by the time I got back up she had pulled the chicken out of the oven & set the HOT pan directly on the dining room table! She had dished up chicken for the kids... that wasn't cooked! And there was a trail of chicken grease across the floor from the stove to the table! ARGH! I called for backup, "Brad!" And quickly grabbed the kids chicken from them before they ate & tried to clean up the mess. I guess the phone is off limits to me at meal time from now on!

After supper the kiddos & I ran over to Hansen's to deliver Cub Scout Popcorn & visit a bit. When we came home & pulled in the driveway I noticed something sitting outside our garage... it was Cathy's suitcase, purse, & 2 bags of her movies... It is Freezing Cold & Extremely Windy tonight!! (Lovely Iowa wind... no trees to stop the bone chillin cold!) The kids helped me carry her stuff back inside. Brad said she had been doing that since we left. Carrying her stuff out to his truck, he carried it in again, she carried it out again... I guess she is ready to head home again... but this is the first time her things have ended up outside of the house! Usually it is just sitting in the entryway.

So... I am off to bed. I am working a few hours tomorrow morning at ISU. If Brad is home he will be here with her, if not my Mom is coming out to stay with her. Then I am going to Chase's Thanksgiving Lunch at School... yummy School Lunch.... (Jenny said they made 80 pumpkin pies today!)

She was excited to tell the kids she got her Flu shot! I think Chase thought she was crazy! He said, "Grandma, you actually LIKE getting a shot?"

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