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)

Monday, December 3, 2007

Adventures with Mouthwash...

Yesterday Cathy had another good day. (Hallelujah!) My Mom came out & sat with her while the kiddos and I went to Sunday School/Church. Mom said they made Hot Chocolate together... however Cathy only heated hers up for 15 seconds, so it was more like lukewarm Chocolate. Brad got home from work before we got back. So the kiddos & I were able to go spend a few hours at my parents house while Brad was home with his Mom. It is such a nice break to get out of the house... I feel guilty... but the kids & I both need it at times. (I am so Thankful that my family is close & that my Mom is also a nurse & has a tender loving heart!!)

Cathy's cold seemed better yesterday, she wasn't coughing and using as much Kleenex. Gayle came at about 8:30 last night with Misty. Cathy had been in bed since 7:30 so I knocked on her door (it was locked, I might have to start using the tip I read on the Hoffman site about rubber bands) to let her know they were here. She came out smiling & laughing... like a kid on Christmas morning! She was SO HAPPY they were here. She hugged up Misty & later in the night she gave Gayle a hug & a kiss on the cheek!

When she went to bed she started coughing again. So I got her some NyQuil. She came out to take it & Brad and Gayle were talking in the living room... whatever Brad said made her laugh... (NOT good when there is something in her mouth!) She then spit the NyQuil across the kitchen... it was all over her, her hands, her face, her pj's, and the kitchen floor. She just kept laughing. Good thing I have a strong stomach to clean these messes up... both the guys hid out in the living room. (Chickens!)

This morning she was coughing a bit again... & I have been sick all weekend with a sore throat. I called & made an appointment for myself today, Cathy has her yearly physical appointment tomorrow so I thought we would have her checked out then. I tested positive for Strep Throat... Uffda! So that explains why I have been so tired & achy... I was trying to blame it on my flu shot. (Thanks Christy for giving me one Friday... no bruising at all... you are Awesome!!)

Tonight Cathy's mood flipped quickly again. She looked at Gayle and shook her finger again... (here it comes...) "Actually, On Fire!" (Sigh... I was hoping the anger had passed.) Neither of us could figure out why she was mad. I asked her with no relief. I even got her paper & a pen... all she could do was draw a circle on the paper. She answered once spelling the word "A.S.S.". Too which our 7 year old son came in the room (perfect timing) and said, "Mom, that is a bad word!" I hurriedly got the kids off to another part of the house to play while we tried to figure her anger out again. We had planned on going out for supper... but she wasn't going. She sat down in the chair in front of her movie, put a blanket on her lap and said, "No." So... Gayle took the kiddos out for supper while Cathy & I stayed home. (Grandpa Gayle is getting braver! I called Brad & he couldn't believe his Dad had taken the kids out without me!)

While they were gone I again gave her a piece of paper & pen. I wrote out, "I am mad at Gayle because..." leaving it for her to finish. After some time I went back over & she had re-written exactly what I had wrote... no answer. I sat down and had the heart to heart talk with her again. She just waved her hands. I asked if she wanted me to stop talking & she said, "No" & smiled. She patted my shoulder.

Gayle brought her back a Double Cheeseburger from McDonalds... her favorite. She was fine when they got back. Like it had never happened.

I am able to brush off her outbursts & strange behavior... but I worry about Gayle. He says that he just lets it roll off his shoulders. But I can't imagine what it is like being the spouse... watching your Loved One this way.

Tonight she was coughing again so I went to get her some NyQuil. (I can't leave it with her because she will Overdose on it.) When I walked back into the room she was starting to chug the kids "Cool Blue" mouthwash!!! She had found one of their medicine cups and filled it up with mouthwash!!!!! She is so fast & sneaky!! I guess I am going to have to hide the kids medicine now too, & their mouthwash. Once Again... she was laughing. But I will take the laughing over angry any day!!

She is happy to have Misty here. Poor Misty has gotten at least 100 kisses today!

Tomorrow is Cathy & Gayle's 36th Wedding Anniversary. I am hoping for Gayle that she has a good day.

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