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, November 17, 2007

Over the river & through the woods...

Over the river & through the woods to Grandmother's house we go. The kids & I made it up here in 4.5 hours... it was the most relaxing drive I have had in the past few years! Chase counted 30 hunters in orange... he usually counts semis or buses. The reason we had a relaxing drive was... well most likely... due to the fact that Brad left an hour before us and Cathy & Lizzie (our jack russell) rode with him. Brad said their drive went fairly well, other than stopping more often than usual at rest stops for Cathy. When Brad drives he likes to go straight through... I prefer to stop & enjoy the scenery, get snacks, & stretch a bit.

Cathy had only been here an hour before we arrived & had already began "taking back" her house. She had changed photos, rearranged knick knacks, hung a new flag, spot cleaned the floors (with oven cleaner... however... not carpet cleaner...oops...), carried keys around the house (this has become a bad habit of hers... if someone leaves keys out she will pick them up and set them somewhere else... which sends us all on a wild goose chase when we need the keys), started a load of laundry, etc... She was very restless & seemed agitated. She kept letting the dogs out & they would run off... which isn't good on opening day of shotgun hunting season! So we put them in the outside kennel in hopes to prevent injury. She didn't smile or laugh like she has been. I suppose it was due to the stress of traveling, excitement of being home, frustration of having things changed again, & having company all at the same time.

Rhonda came up with supper (our annual pizza burger night!) for us girls & the kiddos... while the guys cooked venison down at the deer shack. (Ryan got a buck this morning) Barb & Soren came up while we were eating supper & the kids played for a few hours. As soon as Cathy had eaten she went to bed... it was about 6:30. I went in to check on her and she was all snuggled up in her bed in her PJ's watching a movie... so I let her be. Everyone had gone to bed but Brad & I when she came out of her room, she walked to the kitchen, came back in & rubbed my shoulders, smiled & laughed when Brad asked what she was doing... but no verbal answer, and then went back to bed. A little later after Brad had gone to bed I was picking things up around the house & she came out of her room around 10:30.. She was carrying a load of laundry & her smile was back. She messed around with the buttons on the washer for a while... she had forgotten again how to use it, finally got it started & smiled and went back to bed.



I could see the spark in her eye tonight. She is glad to be home... even if only for a little while.

Hopefully we will have a good week up here. It is great to be with family for the week... but every year we seem to have a bit of family drama, & with emotions running so High with Cathy being sick... I am hoping & praying for the best! The big dilemma right now is where to have Christmas... Cathy has always wanted Christmas in Wisconsin & they haven't had it here since they moved over 19 years ago to Iowa. Brad & I are willing to come up (my family is being very supportive & understanding) but the rest of the family is split about it... the last thing I want to see happen is for the boys to fight about it... there is so much emotion & everyone is dealing with things in their own way. The most important thing is for us to all be together.

So... I better get off to bed, I am sure Cathy will be up a few more times tonight & ready to make the boys breakfast in the morning... Did I mention that I am NOT a morning person?! You would think after coming up here for the past 15 years for this "Crazy Wisconsin Deer Mania" I would have gotten used to early mornings... but not so much!

GO PACK GO! Break in hunting tomorrow for the Packers game! :)

No comments: