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)

Wednesday, May 14, 2008

Mother's Day Gift


I took this picture of Cathy today in her new shirt!! It is a gift from Toby & family for Mother's Day! SHE LOVES IT!!! It has all 3 of her boys families ironed on it. Gayle had brought the shirt into her earlier that morning & he said she was so happy that she cried & immediately put it on!


My Dad & I stopped in to see her after lunch today as we passed through town. (My Dad rode with me to Wisconsin to look at a house Brad & I are buying... I wanted his opinion on it & ideas for remodeling before we signed on the dotted line) My Dad hadn't seen her since she lived in Iowa with us... since January. Here are a few things he noticed : she was excited to see us (which she is when anyone comes to visit), that she no longer speaks but did try to mumble quietly a few times with no luck, that she used her hands to try to communicate a few things with us, she showed me a card she had 4 different times - either she had forgotten she had shown me or she wanted me to see it again for some reason??, how proud she is of her pictures and how she would point to people in pictures when you talked about them, & she had her things packed up (as usual) & acted as if she wanted to leave with us. (My Dad's mother, my grandmother, had Alzheimer's the last few years of her life so he understands that disease all to well... but he noticed how Pick's is similar to Alzheimer's yet so completely different.)


Cathy worked for my Dad a few different times when she lived in Iowa. One of the best things she did while working for him was to create relationships with some of the elderly people who lived in his Condos. She would help clean for them & in turn spend time visiting with them, run small errands for them, & help them with little things around their homes. They enjoyed her company and she enjoyed helping them.


Wish I could have stayed longer visiting but we had to get home to the kiddos & Dad had the itch to get the fields ready for planting. So we headed home. Happy to have stopped but with heavy hearts.

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