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, May 27, 2008

Memorial Day weekend

We took Cathy out to the cemetary on Memorial Day to put out flowers. When Mia & I stopped to pick her up she wanted to take along the artifical flower arragement Gayle had given her (the one she had been watering & we all had been secretly dumping the water out of!!). We met Gayle, Chase, & Gary at the church cemetary. Cathy placed her flowers on her Dad's headstone. Rhonda & I had picked up some artifical flowers earlier that week & Cathy tried to help me put them together... once we had them together she put one next to her Dad (her Mom is buried in California) & one next to her Grandparents. Afterwards Mia & I took her for Ice Cream and thought we would stop by the park. Cathy only lasted about 5 minutes at the park and was ready to go. So we headed back to the NH. Mia wanted to stay & watch the Little Mermaid (we had taken that movie when we moved Cathy in thinking the grandkids could watch it when they visit... & Cathy actually has it on alot of the time herself) Grandma Cathy let Mia lay down in her chair & watch the movie. I was surprised that we were making it through the whole movie... but just as I thought that she turned it off just before it was over (when Arial watches her prince sail away to marry the Sea Witch... yes, I have seen this movie alot!). Mia was upset... she still doesnt completely grasp Grandmas disease & stomped over with her hands on her hips telling Grandma to put the movie back in. Cathy just blankly looked at her & tapped her on the head.

I noticed while we were up in Wisconsin that she packs her things up less... which Jean had also told me about. A few times she would try to give me her hanging clothes again & I would say, "Cathy, if you send those home with me you will be walking around here naked!" And she would laugh & laugh and then put them back in her closet. Having her TV bolted down also helps. She loves to show you the cards she has gotten. So to whoever in the family may be reading this... please send cards!! She loves it when the mail cart comes around!!!! Aunt Charlene sends her the cutest cards with animals on them that she Loves. Tracy had sent her a card with pictures of the kids which she always shows us. And Nina sends lots of cards also.

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