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)

Tuesday, February 3, 2009

Update from Barb S

Things are pretty much the same today. Gayle thought she looked better, I on the other hand thought she was weaker and more tired looking. She went to the dinning room in the wheelchair and had a frozen icey, something different. It went down well, but a few minutes after is when she had problems with getting air. Then Cathy and I went back to unit and Shelly and I entertained with Karaoke,(missed Jean) but not any smiles today and trust me it's something to laugh about. I decided today that I'm not going to feed her anymore in the dinning room at snack time, I'll leave that up to hospice,to risky. In the unit there are nurses close by if needed. Gayle went out of town, so I made sure when I left today that they call me if she gets worse and Brad is working, I'll go right away. I've also made arrangements at work if I need to go over on a work day. Angie said Toby called today to check on things. I made toffee bars for the staff up in the unit today to thank them for all the TLC they give Cathy. Well, I better get some supper and then Pete and I will check on Cathy before we go to the hockey game.

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