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)

Monday, November 26, 2007

Thanksgiving

I am finally recovering from a long week... I took a 2 hour nap tonight after working this morning from 9-1 for my friend Anju. I didn't realize how tired I was... you would think that a nice relaxing week in Wisconsin would rejuvenate you. But... with Cathy's illness, 8 kids, 5 dogs, & everyone being crammed into the same house... it was a bit chaotic at times. A Big Thanks to Brad for watching the kiddos & his Mom tonight, he made supper & did dishes!!!

The next few entries are a summary of what has happened since Thanksgiving day... I was too tired at night to get to the blog or I was visiting with family. Hope you all had a Wonderful Thanksgiving!

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When I got up Thanksgiving morning I was greeted by Gretchen making breakfast in the kitchen & pointing at a casserole dish of frozen green beans. Yes, Cathy was getting ready for Thanksgiving dinner already, and we weren't having it until 5 pm! Gretchen said she had tried to talk Cathy into stopping but couldn't. I said, "lets just let her make it... & we will fix it later, she wants to help out." So at 8 she put in the frozen green beans & it sat on the counter uncovered until 10 when she added the cream of mushroom soup which sat on the counter until noon when Cathy went to bed. While she was resting Gretchen helped me dump it & remake it... we cooked it while she was sleeping & hopefully she didn't notice it was now made of french style green beans & not frozen cut green beans... uffda

Yes... Cathy slept from noon until around 4. She has only done this a few times & it always seems to be after change occurs in her life. I checked on her a few times and she was cuddled up to her pillow.

More family arrived today... Toby & family arrived at 4 am & Nicole came at about 5 pm. And unfortunately Brad had gone back to work on Tuesday morning & he didn't make it back up til Saturday night... by the time he got back all the leftovers & Bonnie's cookies were gone... poor Brad... he ate Thanksgiving dinner alone at Happy Chef in Iowa. :( Rhonda & Larry stopped by that morning to say Bye... they had decided to head home early. (below is a pic of Cathy & Rhonda I snapped Thanksgiving morning) Thanks to Rhonda for all her help & keeping Cathy laughing all week!!! We missed you after you left!! And Mia missed her buddy Larry!



After Cathy got up she wanted to help so we asked if she would set the table. She set for 6 in the dining room & 4 out in the garage... (Gayle had brought in the patio table & chairs to his heated garage for the week. Plus the kiddos rode their trikes & scooters in there all week... it was a nice place for them to work off energy!) Never mind that we had 15 adults & 8 kids to feed... but she was trying to help out. When Nicole arrived she greeted her with a big hug! It is a blessing that she still knows who we are!!!!

That night Cathy snuck out of the bedroom & was mad at Gayle again. Every night she will peek her head out of the door and look at us, usually smile, sometimes wave at us, & then go back to bed. But that night she also pointed at Gayle & said, "You... (& she mumbled something we couldn't understand)!" while shaking her hand at him. We all looked shocked & looked around at each other... What?????? She had done the same thing the night before & Rhonda and I couldn't figure it out then either. She also did it Friday night when Jean & Dave (a family friend) were over after supper. 3 nights in a row... but not on Saturday night. I went into her room each night & tried to ask what was wrong. No luck... I guessed and she would say nope & just point towards the living room and say Gayle... each time I would say, "I am not a very good investigator am I?" And she would smile and reach over and cup my cheek in her hand & pat at it.... (in which I almost cried each time...) But I never got my answer... I guess I wouldn't make a very good private eye... Agatha Christie & I share the same birthday... I had always loved her books... but I guess I am not cut out at that mystery stuff.

So all & all Thanksgiving was a good, crazy, & mysterious day. Tracy, Gretchen, & I attempted to cook Thanksgiving dinner while 8 kids played around us, the 3 youngest crying... & the men were all out hunting... Thank goodness for Barb bringing up half the meal, Bonnie bringing her goodies, & Ari bringing up snacks as well! I guess it gives us a HUGE appreciation for all that Cathy has done over the years!!!! You don't realize what you have until it is either gone or slipping away from you.



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Friday Cathy wanted to hunt... that morning she sat in the Garage with the guys while they cut up the 3 deer they had already gotten. She sat in her orange hunting jacket. After they left she wandered around all day in it & at times had on her orange stocking cap and you could only see her eyes peeking out. I caught her a few times trying to get into the gun cabinet. She said, "I can't get my rifle out." I told her I didn't have the key & besides that she couldn't hunt... she didn't have a license this year. And she just sighed each time, dropped her shoulders, & walked away. Cathy grew up in those Wisconsin woods... they hunted to eat... they didn't have much but they had the land. She loved too hunt.

Gayle took her out to the stand by the house that evening. She was so excited to go. They didn't see anything but he said she surprisingly sat very patiently still. I am so glad that he gave her that chance to sit with him, even if she couldn't handle the gun, she could sit in anticipation of seeing a deer with him. I know that made her feel good.



Tracy learned not to leave your cell phone laying around... Cathy likes to help out by plugging your phone into the charger. She grabbed Tracy's phone & plugged it in her bathroom... she must have thought it was Gayle's... it took us a while to find it. I know that if I can't find mine to check out chargers... she has usually plugged it in for me.

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Saturday Cathy went to Baraboo with Toby & Tracy. They took their 2 oldest & Chase with them to Build-a-Bear and I got to stay home and have some Auntie time with the 2 youngest & Mia. Cathy really had a good day! Honestly I was worried about how it would go for them... you never know how she will do... I am so Thankful that she had a good day. Tracy said she was so excited to build her own bear, she picked out a soft fuzzy bear with patches on it. They put the 2 oldest kids voices in it saying, "We Love you Grandma!" and Toby said, "I Love you Mom!" Cathy squeezes the hand & you can see her face light up! It was the Perfect Gift for her!!! Patches is sitting on her dresser here in Iowa.

Oh yeah... did I mention that Cathy needed a new suitcase because her zipper was broken. And Rhonda went with her to get one. Well... one morning Cathy burnt her old one... despite us telling her not too. There it was, standing up in the burn barrel smoking away... She still LOVES to burn trash! Twice I left notes for her on the trash can, "Cathy, DO NOT BURN, cans inside." She burnt them anyways.

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So much more happened over the week. I can't remember which night it was... but one night Cathy came out when it was just Gayle & I still sitting up watching the news. She pointed towards the bedroom and said, "Snake!" (If you know Gayle... you know the one thing he hates is snakes!) And normally in mid November I would go, "Yeah, right!" But... after the snake episode in Wisconsin this summer... I wasn't sure... it could be a snake! I was thinking, 'Why is Brad always gone when this happens!' (This summer a snake came home in our pool bag, just a small Gardener snake, but a snake! I set my bag by the kitchen stove turned around & there it was slithering across the stove top! I yelled for Gayle... he didn't come... chicken! Cathy came. & there we were chasing a snake with a steak knife... I know, I could have picked it up... but I wasn't going to touch it!!! And Cathy normally would have just picked it up and carried it out... but not anymore... she was just as scared of the poor little guy as I was! Needless to say, the poor thing was beheaded by us & thrown outside!) So... I hesitantly walked into the bedroom with her & peeked around the bed... there by the window was a long... black... skinny... curled at one end... plant leaf. But for a moment, my mind thought it could have been a snake. Cathy was sure it was until I picked it up & she laughed! She took it out to Gayle laughing. I am just Thankful that it wasn't another snake!

If you haven't noticed I am always guessing how she feels. The best way to know how she feels is to watch her actions. She may not always answer the way she wants to... that is one thing the Dr. had told us early on. She may say no and mean yes. But she always does what she wants. On Sunday the kiddos & I headed home after lunch. Brad was staying until Monday morning. We asked her what she wanted to do... go home with us or wait til tomorrow with Brad. She couldn't seem to give us the same answer, once it was with me, once it was with Brad. But... she had already put her suitcase in my van early that morning.... and after we asked her what she wanted to do she brought it in. There was our answer... she wanted to stay.

That afternoon Gayle, Gary, & Jr. took her with them to sit in the deer stands while Brad drove the deer. She got to go hunting again. :)

We also discussed Christmas again. Saturday morning Toby, Ryan, & I (since Brad wasn't up there & he had told me what he wanted) talked about it. It was hard to decide since we all have different feelings about what we should do... the last thing we want is to fight about it... after all the most important thing is that we are all together. I can't speak for Toby & Ryan, but for Brad & I we want to give her the gift of having Christmas in Wisconsin again. She used to speak out about having Christmas up there again. They moved to Iowa when Brad was in 7th Grade and she missed Wisconsin SO MUCH. She finally got to move back up there 4 years ago but we always have Christmas in Iowa... since all 3 of us girls have our families here. To us it is almost like "Make a Wish" foundation... giving her something material now seems irrelevant, but giving her something she always wanted after all she has given up for her family seemed so important to us. Yes... it is going to make it logistically hard for all of us... Brad with work, us girls with our families, & more traveling for everyone. But it is just one year. After this we can go back to our same old routines. Sometimes I think she is past the point of understanding we are having it up there for her, but other days I think she completely understands it all. Gayle said she has asked to have it up there over the years & he feels that it was important to her, but he wasn't going to make the decision, he wanted to leave it up to the boys to make the right call, he knew it would be a hard call. So... we are having it in Wisconsin. Hopefully everyone will be there... hopefully we will all still enjoy being together & Cathy will enjoy one last Christmas at home in her beloved Wisconsin.

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