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, September 4, 2007

Foods

Chase helping Grandma with Chocolate Chip Cookies - 2002



While reading this... Please remember Cathy would never have eaten this way... these changes are caused by the Disease she is suffering from.

Her eating habits have changed. She used to buy healthier foods. I don't remember her having any snacks around accept for the cookies she made for us. She made AWESOME chocolate chip cookies & oatmeal raisin. She would make chocolate chip for Ryan, Oatmeal Raisin for Toby, & Oatmeal without Raisin for Brad. Soft, chewy, thick... I can smell them fresh from the oven... Yummy!

She would hide them from me & Ryan. :) She made them for us, but she would only bring out a bag at a time and keep the rest in the freezer. Always telling me I needed to watch what I ate. That used to make me so angry... now I would Love to hear her say that again.

Anything she sees that has sugar in it... goes in her mouth. Fast, in big amounts, & without chewing! She will shove it in & swallow. She would be embarrassed to know that now. A box of oreos gone in 2 days, a box of ice cream drumsticks gone in 2 days, & Ryan said she ate almost a whole cake overnight while staying at their house.

At a meal she will fill her plate, eat standing in the kitchen, & be back on the couch in front of a movie before any of us have sat down at the table. We used to always eat family style at the table. Not anymore.

I think about how it must be for Gayle in the evenings. He used to come home to a nice supper or a plate waiting for him in the fridge to heat up. Now... he has to fend for himself or check to make sure what she made is safe to eat. Cathy always took care of the house (kids, dogs, home) while Gayle worked. Now he is doing both jobs.

One evening when the kids & I were in Wisconsin this summer I made one of her favorite chicken dishes. All of the sudden I noticed Chase, our son, was laughing... but nervously. I looked over & she was choking. Her cheeks were stuffed like a chipmunks. Just as I got up to do the Heimlich on her she coughed it out - it looked like a handful of cut up chicken pieces. I walked her over to the sink because she was still coughing. She began to settle down & took a drink of water. Before I realized it she went back over and ate the pork chops pieces she had just coughed up. Needless to say... I didn't finish my chicken.

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