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, November 17, 2007

Wisconsin... here we come again

Cathy has been counting down the days to head home. And tomorrow morning we finally hit the road! The Hansen's and Ryan & family headed up today. Cathy, the kiddos, & I head up in the morning. Brad is hoping to be up for a few days... but it depends on the rail, the railroad makes his decisions for him.

Working yesterday really threw her off again... she was in her pajamas by 4'oclock and I had to talk her into coming out to eat for supper. She dressed for supper, ate, & then headed straight back to bed. So this morning she was up early again. When I got up at 6:30 she had our van packed and had taken everything out of the back of my van and put it in the garage... uffda.

Last night I watched the movie, "Away from Her." It is about a woman who has Alzheimers and how she & her husband deal with it. It was very depressing & very long... but very touching. The situation has some similarities to ours... but many differences. Cathy still knows who we are & where we are. She just doesn't remember how to do things or who she really is.

For instance. Today she tried helping me all day around the house. She did laundry with me... I caught her putting wet jeans in Chase's shorts drawer & wet sweatshirts in our closet, I found 5 dryer sheets in the dryer with one load of clothes, she matched my basket of socks for me (this is my least favorite job... & I tend to put it off until I have to do it) but unfortunately none of her matches were matches... so then I had to unmatch all the socks & rematch them... including most of them that she tried putting away, Chase's socks in my drawer, Brad's socks in Chase's drawer, & my socks in Chase's drawer... Luckily since Mia has cute little girl socks & hers were in the right drawer & they all matched, it helps that they have colored stripes & polka dots. In the kitchen I found dirty silverware in the drawer, 4 coffee cups in the sink (she will fill her cup, take a sip, dump the rest, & then fill it again... doing this over and over all day), measuring cups in the bowl cupboard, & many other interesting things. It adds alot of work... but she is trying to help, I have to give her that.

Everywhere I go in the house she brings me my drink. I was doing laundry & she brought my glass downstairs, I was folding laundry & she brought it to the bedroom, I was starting a fire in the pellet burner & she brought it to me, etc...

I have noticed she likes to keep her hands busy. Last year I noticed she was rubbing her thumb on her fingers when she sat, this summer she started constantly using the remote (clicking, changing, clicking, on, off, menu, etc...) just to keep her hands busy, & in the van she is constantly opening & closing the glove box, playing with the radio & temp. control buttons, & thumbing through my junk between the seats... So I am looking for ideas on what to do to keep her hands busy... any ideas??? Brad thought of an etch a sketch. If I was crafty I would sew something with buttons, zippers, etc... to put by the chair & in the van. Maybe I will attempt this after Thanksgiving.

My family came out for supper tonight. My Aunt Connie & her family from KC, Grandma & her husband from Casey, & my parents. Cathy visited with my Aunt & Uncle and smiled and laughed with them. Later she brought out her pics of the boys I had hung on the wall in her room to show my Aunt. She was very proud of them! She was impatient about waiting for supper again so I pulled out leftovers from last night. Before I could get to them she started eating them, I asked if I could heat them up & she shook her head, I heated them up & she took them to her bedroom to eat... ate... & then went to bed at 6:30. I tried peeking in on her and she had the door locked... she peeked out at us a few times and smiled. While we were playing cards she came out & gave me her dirty chocolate milk glass & then went back to bed.

Well... I better get off to bed. I am sure she will be up early & ready to head North.

No comments: