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, February 25, 2008

Anger again...

We talked to Gayle tonight and he said Cathy had a 'Bad' day today. We are still not clear on all the details but it sounds like she was very frustrated/angry today, had her things packed up again and even her TV on the floor.?? I guess the home called Barb S. and she was able to go over and help calm her down but it was harder this time. (Thank You Barb for being there!)

It is so hard being far away at times like this. Even this weekend we almost picked up & drove up for the day. After spending so much time with her we have our ideas about what is setting her off... but we don't know exactly since we aren't there. And we can't help from a distance. URGH!

I mentioned to Gayle that we should still look into checking out other places just in case they tell us she needs to move. Just to be prepared and have a plan. Once again I want to just drop everything and drive up to help do that also. But I am working full time the next 2 weeks.

So I am sending up some Prayers tonight... for Cathy, for the family, for good friends, for the staff at the NH, and for hope.

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We were feeling great about things after this weekend. Rhonda & Larry were able to go up and spend the weekend. Rhonda said she was angry at someone when she got there on Saturday but the anger left quickly after she saw Rhonda coming in. She had alot of great visits over the weekend with her and was feeling good about things also. She said Cathy was always holding her bear alot! :)

Gayle has also been able to visit more. Plus Gayle takes Misty along. Gayle & Larry took Misty in on Saturday and Cathy just 'lights up' when she comes in. Gayle did get in trouble on one visit for not bringing in chocolate... he realized why she was upset and went and got a candy bar from the nurse... then Cathy was all smiles again! :)

Brad said he talked to Ryan and they have been there to visit also. He also asked Ryan if his family had been in and he said they had and it had gone well also.

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