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 15, 2009

Downturn update

I talked with Brad & Gayle and today is a better day. Brad talked with Hospice while he was there this morning & they discussed a few options to help her out. She is too weak to move around in bed... where she lays down is pretty much where she stays. It is possible that she rolled out of bed yesterday (??) trying to move around. Hospice is hopefully going to get a bed for her that raises & lowers, and also a mat for the floor.

Yesterday we were definately SCARED & very very sad... we were thinking in terms of she only had a few days or a few weeks. Toby & family were ready to drive down from North Dakota for the weekend.

I called Angie (Nurse) this afternoon & she said Cathy is having a better day. She is still having difficulty eating, but nothing worse than before. And quite possibly the improvement could be the medication changes made yesterday.

Thanks for all the thoughts & prayers from everyone! It is such a comforting feeling!!
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