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)

Friday, August 3, 2007

Interests

In the years I have known Cathy she has been a busy bee. Never sitting still for long. Her boys could tell you all the things she Loves. Such as: gardening, taking care of her flowers, walking her dogs, hunting, anything to do with the outdoors.

When I first started dating Brad we were still in high school. His older Brother Toby had left the previous year for the Air Force & his younger brother, Ryan, was in jr. high. At the time her life seemed to revolve around Ryan's Ice Hockey schedule. They were constantly on the go from city to city. Her life was her boys.

I cannot remember a time, other than when she was watching the Green Bay Packers, that I saw her actually sitting on her couch! All of my memories from those years in Iowa involve her standing in her kitchen cooking, folding laundry, or being outdoors.

So... that is why it is so hard to see her this way. Every time we see her it is worse. She is sitting more & more. Watching more & more TV. Actually(oops, I used it again), she is watching movies. The same movies over & over. Movies like: Princess Diaries, Prince & Me 2, Secondhand Lions, Everafter, High School Musical, Never Been Kissed, etc... She fast forwards through any part of the movie that is sad or has confrontation. She can watch a movie in 20 minutes - fast forwarding over & over. It is virtually impossible to watch a movie with her.

Our daughter sings the words to every High School Musical song. Our son, who is usually very patient, is finally saying, "Grandma, can't we just watch cartoons?" or "Grandma, I don't want to watch that again!" She will just laugh & sometimes change the movie, sometimes not.

Earlier this year I tried getting her interested in reading again. She actually (there it is again!) used to write stories. One year for Christmas I gave her a personalized pen & notebook. Reading went well at first. She read Harry Potter books, Romance Novels, & even began driving into town to the Library. In fact, on one visit the kids and I went with her. The ladies at the desk knew her very well.

But then, sometime this summer, I noticed she had stopped. The few times I saw her with a book she was reading the same page... over & over again. She would pick it up, open it, mumble some words out loud, put her bookmark in, & set the book down. Repeating this throughout the day, not getting anywhere with the book & soon returning to her attention to a movie. I wonder if she can read? I wonder if she can understand or process anymore? I tried to ask her if she was having a hard time reading. But those questions went unanswered with only blank stares & nods of her head.

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