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)

Thursday, November 1, 2007

Flyswatters & Oreos

Well it has been a busy week. The kids have been trick or treating, we have had school Halloween parties, & Cathy started her new medication.

While I took the kiddos out trick or treating, Brad stayed with his Mom. He took her over to see Rhonda & Larry. She was excited to get a bag full of caramel apple suckers... I think she ate most of them that night! In fact, I think she has eaten almost 1/3 of the kids candy! I have hidden their favorites from her, so they won't be sad. Wednesday Cathy spent an hour at my parents house while I went into Chase's school for his Halloween party... I asked her if she would be comfortable doing that, I said, "Cathy, the Dr. doesn't want you to be alone and I need to go to Chase's party at school, would you be ok going to my parents house for an hour with Mia?" She answered, "Sure, you can go to Chase's party." and then she grabbed her 2 favorite movies and her coat and got into the van. She doesn't always answer with the exact words, but her actions answer for her.

Mia & Grandma Cathy have been interesting this week! It is almost like having 2 little girls around... sometimes they fight like sisters. The other day Mia got tired of watching Cathy's movies over & over again (Eragon & Pride and Prejudice this week), so Mia took the DVD player remote from Cathy... Cathy then grabbed the flyswatter and smacked Mia over the head... Mia then gave a dramatic cry followed by running to me & tattling on Grandma Cathy. We talked about it & I thought it was resolved, I should have known better, because the next thing I know Mia sneaks behind Grandma's chair & grabs the flyswatter... then she hits Grandma over the head!
Grandma gets up to take the flyswatter back... I get there just in time to break up the fight! Uffda! So I let Mia pick out a movie to watch in my bedroom. Problem solved for the moment...

Cathy has become very attached to that flyswatter. She has been swatting at the orange ladybugs on the window (I don't know if you have them, but they stink, bite , and are hard to get rid of!!) however... there is one minor problem, the ladybugs are not on the inside of the window... they are crawling on the OUTSIDE of the window... needless to say, she gets quite frustrated that they are not falling off the window... but she keeps trying, you have to give her that...

It is hard to say if we are noticing a difference in her yet with the new medication... it is most likely to soon to tell, but it does seem like she has been more restless the past week. She is constantly looking out the window. In fact last night she kept telling me to move my van back in the driveway. I asked her why... and she said, "Gayle... coming... truck and the trailer." I explained to her again that Gayle is at work in Wisconsin... she gave me the "angry Cathy look (tilting her chin & piercing her lips)" and said, "No, I just saw... truck... up there". I explained that our neighbors moved and that the owner of the field has a truck. He does keep driving by our house to go down to the field & they just combined the cornfield next to our house... which has added alot of traffic the past few days. I am thankful that we live in the country since we usually don't get too much traffic out here.

I am still debating about going up to Wisconsin for the weekend. Part of me thinks it would be good for her to go home a few days & see Gayle (and Misty). Her bags are packed and down by the door today. Part of me thinks it will make things worse - she may regress faster if we keep moving her or she may not want to come home with me again. The kids REALLY want to go up to their house. I am going to sleep on it... maybe God will give me a vision in my sleep! :)
(I wish it was of palm trees & a beach!)

Gayle did call earlier this week. Mayo Clinic in Rochester, Minnesota called and they want her to come sooner for more testing. A new MRI is available, some type of research/chemical study... I don't know the facts yet. But they want to see her in the middle of December for 2 days. MRI one day and then MRI the following day to compare the 2 and an appointment with the Doctor. She heard me talking to Gayle on the phone (with her radar ears) and when I got off she did this... she pointed at her head and moved her finger in circles & said MRI. I said yes. She kept walking around the house and saying MRI while doing that hand motion... I asked her if she was okay having 2 MRI's and she said "Yep." We'll see...

Oh yeah... Oreos. We LOVE oreos & milk here... but Cathy never used to drink milk, except for maybe a small glass with supper. But lately she has been drinking almost 2 gallons a day along with eating oreos!!!! We have Brad's Great Grandma's (Cathy's Grandma) glass cookie jar full of oreos... at least we try to keep it full. At supper last night I set the table and poured glasses of milk. We sat down to eat and all of the sudden Brad says, "Who has been dunking Oreo's in my milk!" Cathy spit across the table & burst out laughing!!! (again) She is sneaky sneaky! She had her own glass gone already... Brad just kept looking at his glass & at me... it was like he was thinking, do I have to drink this or are you going to get me another glass!

So... we are checking on getting stock in Oreo's, flyswatters, & toilet paper! (I went to Sam's Club tonight & bought another 72 rolls!!) And does anyone know where to find Mr. Darcy??? :)

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