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)

Sunday, November 30, 2008

Thanksgiving Week 08

Gayle & Toby took Cathy out for a drive last Sunday... they stopped in a nearby town to watch Brad's train at a crossing. Below are a few pictures Toby took... Cathy on the drive, Brad's train headed for the crossing, Cathy laughing when she saw Brad, Brad waving to his Mom, & Gayle holding Cathy back (she was going to walk up to the train).








We had a fun week with family! Cathy was the best I have seen her in a while, I think having family here to visit perked her up quite a bit!!

We didn't get to visit as much as we all had hoped... having 9 kiddos in the house plus adults, we ended up with a round of Strep Throat, Miserable Colds, & Stomach Flu!!! Uffda!! But we all got the chance to spend a little bit of time with her.

Her Sister Nina was here from Georgia for 5 days & Niece Nicole was visiting from Utah as well. Rhonda & Larry were up the first half of the week. And Jean is always in & out... plus she came out to play cards with us in the evening.

Ryan & his family came in while we were visiting on Friday. Cathy had the whole TV room full of family! In the past she has not interacted well with their kids, their youngest was born after Cathy was sick & their oldest was born when we think she was having symptoms already. They are not familiar to her. But that day she smiled & tried to pick her grandson up. She also tried to kiss him on the cheek... she still cannot pucker, so her mouth is just open. It was a good moment... to see her with him. I noticed he looked up at her a few times & just stared... he had a curious look in his eye. To me it was almost as if he knew who she was... who knows what little kids comprehend?

Toby got to spend time with her alone & with his family. His wife Tracy had to perform "build a bear" surgery again... his voice was worn out & they had to replace the voice box again! She LOVES her bear!!

I remember Cathy always calling me after Thanksgiving week (anyone else who has talked to Cathy on the phone will understand this...) & she would tell me what she was doing: washing sheets, making beds, vacuuming, dusting, sweeping up dog hair, etc. I always would think, "why does she tell me this??!!" But now... I get it. After everyone had left we stayed another day... and I was: washing sheets, making beds, etc... trying to help Gayle. Wow... having family visit is alot of work! And being an adult during the Holidays sucks!! I want to be a kid again... play games, eat pie, & build forts!

The kiddos & I stopped in today with Gayle on our way out of town. She hadn't eaten lunch so Gayle fed her 2 pudding packs while we watched the Packers on TV. (We won't mention how bad the Packers played... only that Brett Favre & the Jets are doing well!!) Mia wiped her Grandma's mouth with her bib after she finished each pack... it was sad to watch the roles reversed. It was hard to watch Gayle feed her today as well... he is so caring with her, if she only truly could see that. Every woman wants to see that side of her husband, but... not in this way.

1 comment:

Terri said...

Looks a pretty nice time. Glad you still have those. Nice to see her smiling. My sister couldn't smile any longer...as hard as we would try.

take care, you are doing a fabulous job.
Terri