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, October 15, 2007

Laughing



It's been a few days since I posted... we had a busy weekend. Chase started selling popcorn for Cub Scouts (I know every parent 'Loves' selling things with their kids... but it is important to Scouts & Chase is really enjoying cub scouts). We had Chase's 7th Birthday party with some friends on Saturday. And his friend Nic's party was on Sunday. (Plus planning for the Sunday School lesson Saturday night... last minute... while trying to watch SNL.) And the Packers won again!!

Rhonda came over Saturday & stayed with Cath while we went to the Bowling alley for Chase's party. She had a good day Saturday! Rhonda said they walked over to the house next door (which is where Cathy & Gayle lived when they were here in Iowa... 4 years ago), Cathy noticed some changes in it. She also started a few conversations... which is unlike her now. She didn't seem to be 'chanting' her words & repeating them over & over either.

Cath has been going to bed around 7:30 every night. It is good for her to have this routine. The last few times she has stayed here it has ranged from 5:30 - 1:00 am. Plus this gives me time to get the kids to bed & have some time for myself.

She has been drinking almost a gallon of milk every day! I think it is from her craving for Cocoa Krispies!! She has been eating Oatmeal for the past year or more every morning... she must be getting tired of that routine... because we have gone through a whole box of the kids cereal now! Although when Gayle came tonight I mentioned it to him... & a few minutes later we heard the microwave door. I walked over & noticed she had put a bowl of Oatmeal inside again (with milk already added... we have tried to tell her this is not a good idea for a year now). It was only 6 pm & breakfast isn't for another 12 hours!!

Gayle came this evening with Misty (their chocolate lab). He is traveling for work a few days so Misty is staying with us. When Gayle came I was picking Chase up at school. Brad called & said that she got so excited... she started running towards the front door and said, "Gayle!" When I asked Gayle about it tonight he said he didn't even think she noticed he was here. I told him about what she had done. I am not sure if she was excited to see him or if she was just happy he finally made it... she knew all day he was coming. I had also noticed that she didn't have any interaction with him... but laughing when he talked to her, but that is her main form of communication with us all now. I am so Thankful that she is laughing. She could be angry... so many people with alzheimers are angry... I know that this isn't alzhemiers, but it is similar in so many ways.

Tonight at bedtime (the 3rd time I went into the kids room telling them to be quiet & go to sleep) Chase told me he was scared... here is our conversation:
Me: What are you scared of?
Chase: The Dark, it is hard to sleep in the Dark because I can't see.
Me: But Chase being dark helps us sleep... we wouldn't be able to sleep well when the Sun is up would we?
Chase: But it is scary?
Me: Remember our prayers... God is still with you in the dark.
Chase: But Mom he doesn't protect everyone.
Me: What do you mean?
Chase: Grandma is sick.
Me: (???What in the world do I say????) Sometimes people get sick, but God is with us to help us through it, to be our strength.
Chase: Can we pray about Grandma to make her better?
Me: (I didn't expect that... what is the right thing to say?? I don't exactly remember what was said in our prayer, but we held hands & prayed together, & I tried to say something to comfort him.)
Chase: He smiled at the end of our prayer & went to sleep soon after.

We cooked up some of her favorites for supper. Venison Butterfly Steaks, Fried Potatoes, & Pistachio Salad. Grandpa brought Chase a huge pumpkin from Ole's Garden. Ole is a good friend up in Wisconsin whose land is near the Handly's. We can trail ride on 4-wheelers or the gator and go visit his huge garden, the kids Love to see Ole. I am attaching a picture of Chase on the pumpkin... notice Cathy standing in the window. She often looks out at us when we are outside. We get her out with us but she always seems to slip back inside quickly. She used to spend so much of her days outdoors, but not anymore.

I also got a wee bit nervous today. We were sitting at the dining room table & Cath said, "Everafter, On Fire, Shit, Come Alive" My head quickly turned & looked at her... did I hear "Shit?!?!" Oh no!! What if she starts saying Shit now too. This would definately not be a good word... It would maked going out in public even more interesting & I can hear the kids giggling now. So far that is the only time I have heard it. Let's keep our fingers crossed...

Movies the past few days: Eragon, The Holiday, & Grumpy Old Men

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