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)

Wednesday, February 27, 2008

2 notes from Barb S

Emails received about Monday:

Gabe called me about 3:30 yesterday afternoon, said she was worked up and he couldn't redirect her. I went right over and stayed until she was calm. When visitors would come in she gave hugs and smiles to those she knows and then would go back into her room and be alittle upset, but was fine when I left. Smiling and happy. She'll be fine. I think Mons. are the worst for her. I have noticed before, that after a weekend when she has lots of visits she's worked up on Mon. It's great she has visits, so this may happen sometimes. I checked in again later last night and things were O.K. Ryan was going to go up last night after I told him, but I told him she was settled in for the night, so he was going up this morning. I know how hard it is, but she will have days just like others that live up there. Take care! Love Barb
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Update:
Hi Again, Things are going better. I went up this a.m. and Ryan was there and she was calmer once she found out he had mini musketeers in his pocket. She let him hook her T.V. back up and watched movies with him. I had to go to work for a meeting, but Ryan called me later and said she let him put her things back in closet and was ready for him to leave at lunch time. I just checked in after walking and she's alright. Hope tomorrow is a good day for her. Love to you all, Barb

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