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, October 26, 2007

Helping Brad

Yesterday she helped Brad in the Garage! - I went to get Chase at school and while I was gone Brad was talking to his Mom. He told her when I got home he was going to have me help him bleed the brakes in his Dodge truck. (if you are wondering...I have no idea what that means...) He went to wash up and when he came back out she wasn't in the living room. He looked outside and she was sitting in the driver's seat of his truck! Brad walked out there and she laughed & he said, "what are you going to help me?" and she said, "yeah". And he said, "you remember how to do this?" and she answered, "yeah." So she did... she helped him & she remembered how to do it without him reminding her. It amazes us what she can remember sometimes.

Later on last night we were making supper. Brad slow cooked a brisket... mmmm... & I was making sides. I set some baked beans on the counter and walked across the kitchen to peel potatoes, before I knew it she opened the can and put them in a pan that was sitting dirty in the sink... Argh... (she was trying to help). She also kept turning the oven off all day while the brisket cooked.

And another odd, yet slightly embarrassing fact is burping. Cathy was never the kind of Mom who would burp in public. But for the past 6 months or more she burps anywhere. At restaurants (many times at Stones Throw I have looked around the room hoping no one heard her) and at home. She would be SO embarrassed if she knew now what she was doing. I remember her on many occasions scolding Brad for burping at the table after a meal. I also remember him saying it was a compliment once. But unfortunately, I think people are more understanding when men burp loudly in public. Why is that??

I called Toby today so Cathy could talk to him. She has been carrying a sticky note around with Toby's new baby's info (She became a Grandma again last Saturday for the 8th time!). Even though she can't express it like she used too, just seeing her carry that small piece of paper shows me how much she cares. She didn't say alot when she talked to Toby but she was listening. It kinda reminds of when someone is in a Coma, they say you should still talk to them like they are right there listening. I think Cathy is the same way. She can't express her thoughts & feelings but she hears everything you are saying.

Cathy's friend Rhonda picked her up today at noon. She is taking her to Wisconsin for the weekend. Brad & I are heading up on Sunday after church. I hope their trip goes well... she is going to call us when they get there.

1 comment:

DeeDee said...

The sticky note comment...that is touching, I know what you mean. My mother, too, has trouble remembering her grandchildren's names, so she writes little notes to herself. And it can be touching even though when they are around she hardly seems to demonstrate affection.