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, December 20, 2008

Christmas Party

Saturday we joined Cathy at the Nursing Home's Christmas Party. Cathy was all dressed up for the Party wearing the 'light up' reindeer shirt Aunt Charlene bought her when she was visiting last week & a Santa hat. The nursing home really went all out & it was truly Wonderful! They had a food table with snacks, cheese (this is Wisconsin), & even shrimp! A chocolate fountain with lots of goodies to dip in... the kids ate tons of chocolate covered strawberries! And they even served Wine!! (Thanks to Pete for getting us refills!) The staff kept joking with us that we were the 'Party' table. Jean & John, Pete & Barb, Gayle & Cathy, Brad, the kiddos, & I. Honestly it was hard to eat all those goodies with Cathy watching... a few times she reached out for my glass of wine or one of the kids chocolate snacks. And I had to redirect her to her "thickened chocolate milk" & "yogurt"!!! (I fed her the yogurt and she did fairly well, but the milk just ran right back out her mouth...) I looked at Barb & said, "Do you think we could let her dip her finger into the chocolate?" And she said, "Why not?" So... we let her dip her finger into the leftover chocolate from one of the kids strawberries, and she seemed to enjoy it. And Jean snuck her a few small drops of her wine.

They had presents under the tree for the residents to unwrap. Cathy got a cute blue nightgown with teddy bears on it. We also brought along a few small gifts for her, I had given Brad a small canvas picture of him with his Mom... he decided he would like her to have it so we wrapped it up for her. She picked it up a few times, but then when she would go to put it back on the easel she didn't have the strength to put it back up. (It is very lightweight & only about 5x5 inches) One time she actually stood up from the chair & still had a hard time trying to set the picture on the easel. She has gotten so weak... and that is so hard to watch.

Before the party Gayle took Cathy over to Ryan's place for his daughter's birthday party. They had planned her party without realizing it was the same time as Cathy's. Ryan & his family were able to come by after the party... but by then Cathy was ready to head back to her room. She was worn out. Like she does so often now, she pulled back the covers on her bed to lay down for a bit. When Brad was there a week or so ago they raised the head of her bed up for her... she was laying down & hitting her head on the headboard. And if you sit with her long enough as she rests, she will close her eyes, & you can hear the sound of her breathing... rough & rattly... not a good sign.

It's hard to say whether or not Cathy understood what was going on. Does she realize that it is Christmas? Did she think the party was for her? Does she feel sad knowing what she is missing? Does she see the sadness in our eyes? At times she would smile & make a sound similar to that of a laugh. But at other times she would have that blank "FTD" stare. A few times people she knew would walk by our table and say "Hello Cathy", and she would always give them a big smile as if she knew them.... and she may. Her chin always seems to raise up as she smiles, almost as if her body language is trying to show she knows them... since she is unable to communicate with words.

It was a nice Party... but bittersweet. (Although I am Very Thankful to the Nursing Home for giving everyone such a Wonderful Party!!!!) It is hard to see her like this, and each time it is harder, so hard to comprehend. I keep thinking back to last year & I am so Thankful we Celebrated Christmas in Wisconsin with her! This year she doesn't have the strength to unwrap a gift... the gifts we gave her were in paper bags & I even had to help her with that. As you sit with her you can hear her breathing, she seems to choke on her own saliva at times... as she does this she opens her mouth & tries to cough... but does not even have the strength cough. When she opens her mouth you can see how dry & rough her tongue looks & how her saliva is thick & frothy looking. None of these are good signs & we know that these things are inevitable with this disease... but I pray that she will not suffer with this... not this way, she has suffered enough.

Cathy may not have strength or good health this CHRISTmas season. But the one thing she does have is Family & Friends that Love her! It is so evident. With this she is Truly Blessed!!


















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