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)

Saturday, February 9, 2008

Updates from Barb S.

Cathy's friend Barb S. has been emailing Toby, Brad, & Ryan's families updates on how she is doing. I wanted to share these with all of you also! Thanks a million Barb!! Barb works & lives very close to the NH and stops by frequently to spend time with Cathy.

~ Thursday ~
Another great day! I just came home from seeing her. She's like the greeter for the unit. After I was there someone came in looking for a resident and Cathy said come on and showed them to the right room. She wasn't chewing gum today so I asked if it was all gone and she said yes. I told her I would bring her some tomorrow and she said 2 packs, so 2 packs it is. I asked if she still had little candy bars and she pointed into the kitchen and shook head yes. I'll check with staff every so often to see if she needs anything. Gabe also stopped to talk with us and asked Cathy if she wanted her hair washed and set. She shook her head no and I told her "we don't set our hair, do we?" She laughed and said no. Then I said how about just a wash and she agreed. Gabe said "you women". He said things are going good also. She seems so at home and relaxed now. No mention of Gayle and no On Fire again today. Progress! I haven't talked to Gayle, but Jean told me he is in Chicago. I'll talk with him this weekend. It has to be so hard for him, 36 yrs. and now can not go see her. Hopefully it won't be real long before he can try it. I can not imagine Pete and I not seeing each other after 32 yrs. It makes you realize, cherish everyday because you don't know what tomorrow will bring. Take care and love to you all. Love, Barb

~ Wednesday ~
Hi guys, just came from seeing your mom. GREAT DAY!!!! I saw Gabe, he said he stopped to see her and she was happy and doing good and nursing staff agreed. She saw me coming down hall and started waving and when I opened door, she said "work" I told her yesterday and called there earlier today and said I would be there after work. Before I left she was putting everyone up to the tables for supper. It was cute because she tried to push one and it wouldn't go. She said brakes, went to each side of chair and unlocked the brakes. She is adjusting so well, she's in a very good place. I told her I would see her tomorrow and it would be earlier in day because I'm off. She smiled, gave big hug and kiss on check, helped me with my coat as usual and said "bye tomorrow off". I'm so happy to spend this time with her, she's a special friend. Today we talked about when the boys played hockey and Pete was their coach. She pointed out window at rink and said "Dave hockey". We looked at rink last night and I had told her Dave was at hockey. You'll be happy to know that no one was ON FIRE the whole time I was there. YEAH! Take care and love you all!!!! Barb

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