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 17, 2008

This morning...

Brad called me this morning after visiting his Mom at around 10. He said she was having a good day, she smelled nice & had just had a shower. She was sitting in her room staring at the "Play" screen of a movie... so he pushed Play and sat down with her. He stayed awhile rubbing her back & holding her hand.

Then Jean just called me & said, "Oh Beth, she is having a rough morning..." Jean had been there at breakfast time & Cathy wouldn't eat. The nurses had said she had been up all night. Her eyes were glassy and she was not smiling. Jean tried to feed her and she just pushed it away.

Jean also took her for a walk down to see the birdcage (a lot of nursing homes have them... you may have seen one before?). On the way down Jean stopped to visit with someone & Cathy took off... she found her in the public restroom by the nurses station with the door locked. She finally had to go get the key and get her out. Cathy started to walk out of the restroom with her pants at her ankles!!! Oh... she would be horrified if she knew what this disease has done to her!!

She can change now from hour to hour, it used to be day to day. I don't think I will tell Brad I talked to Jean... I will let him go to work thinking his Mom is having a good day... My guess is that getting a shower between visitors perked her up a bit.

I wonder how she will be when Toby comes this weekend... he has not seen her since this Summer. I hope he gets a few moments with her when she is having a good day.

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