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 19, 2007

Better Day

Today was a better day, she seemed to be more comfortable here today. She wasn't as restless and she was able to relax a bit. Gretchen & I sorted through old family photos. It was alot of fun! We found pictures from when the boys were little, pictures of Cathy's parents, & pics of Cathy and Gayle as kids. We also found Ryan's baby book & Cathy and Gayle's Wedding album. It was like being on a treasure hunt! They had lost a lot of pictures in the fire... they had a fire when Toby & Brad were little, before Ryan was born, and lost almost everything. We have a quilt at home that was made by the local church and given to the family after the fire. Cathy has a few quilts here also. (It is comforting to know that people reached out to them then & Brad loves the quilt because it reminds him of that.)

Cathy kept coming in & out of the bedroom while we sorted and made piles. She would pick up a few pictures and look at them... & then set them down in the wrong pile... it made it a bit difficult... it was hard to not get frustrated with her. When Gretchen & I weren't sure of who was in the picture we would ask Cathy, most of the time she knew who it was, but she seemed better at the older photos. Later on today we were sitting at the dining room table doing crafts with the kids & I looked up and saw that Cathy had put her parents photo up. She had put both copies (8x10's) up on top of the china hutch. It almost brought tears to our eyes... Brad asked her about who that was (he knew, but he wanted to hear her say it) & she proudly said, "My Dad & Mom."

When the guys came in for supper after hunting they sat around & looked through the photos. Gary & the Hansen's were also up here for supper tonight. They enjoyed looking through them, laughing, & talking about old times. We can't wait until Toby & family and Nicole get here Wednesday to look through them as well!

Cathy came in to hand me the phone this afternoon... she was saying, "password?" I took the phone and it was a lady at the bank. She was confused & said Cathy couldn't remember her password and was having a hard time communicating with her. I quickly explained that Cathy had an illness very similar to Alzheimers... the lady said, "Oh... that explains alot!" I quess Cathy had been calling them extremely often over the past year or so asking for her checking account balance, but up until today she had always known her password. She did say that she hadn't called in the past few months... I explained she was living with us now.

Jean stopped by again this evening. She had coffee with Cathy & visited for a while. I think Cathy enjoys having someone stop just to see her. It makes her feel special.

I better get off to bed... tomorrow may be an interesting morning! The kitchen faucet broke tonight... we ran the dishwasher but not all the dishes fit (9 adults & 4 kids for supper) & we can't fix the faucet until the hardware store opens in the morning. Cathy is going to be confused & frustrated. Gayle is afraid she will use toilet water to make his coffee in the morning. Ha ha... I doubt it... but one never knows anymore...

1 comment:

Lisa Handly-Stewart said...

So I hadn't read the blog before I talked to you tonight---did Gayle have toliet water coffee this morning?? Tell him the Bunn would have steralized it LOL Also forgot to tell you today was Daddy's birthday.
Love you all
Aunt Lisa