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)

Thursday, January 8, 2009

Note from Barb S

Hi everyone, just got back from spending time with your mom this afternoon. This is my only day off this week, so worked out perfect that hospice is on board now so your mom doesn't have to miss the 2:00 activities if we can not be there at that time. When I've gone in the evenings Cathy has been in bed already. I told her I will stop right after work tomorrow. The hospice volunteer was just taking her to the dinning room when I got there, her name is Bonnie. She did great with your mom, although Cathy seemed very tired today and not much for smiles which is unusual. I've known Bonnie for a long time, infact Pete and I did hospice volunteer training at the same time she did in 2003. She was a CNA for homecare at the hospital, but when they lost the homecare contract, she lost her job. I filled her in on some things your mom enjoys and the family. Cathy put a Princess movie in for them and I left. Well, I better go now. Love to you all and take care. Barb

__________________________

I was just thinking I would like to write about how Hospice is going for Cathy, but it is hard to write about it since I am not there. And then I opened up my email to find this note from Barb... THANKS BARB!!! :)
Posted by at

1 comment:

Anonymous said...

Hi... just came across your blog and read about Cathy's plight with Picks Disease. I am a consultant in the biotechnology sector, so I know how painstakingly slow research into cures can be, but hope is always there. I'd just like to pass along my best wishes and prayers for Cathy, you and your family.

Charlie d'Estries

January 09, 2009 2:19 PM

Post a Comment

Subscribe to: Post Comments (Atom)