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)

Sunday, February 1, 2009

a few changes...

Here are a few changes in the past 2 weeks:

*Gayle got her a new chair... it's a wing back that she can sit more upright in & if she falls asleep her head falls to the side and rest on the 'wing'. It is easier for her to get in and out of as well.

*Brad & I were talking about his Mom and we both have noticed a 'twitching' in the corner of her right eye... not in her eye but the skin near the tear ducts.

*Her lower lip just hangs open... you can see her bottom teeth. It is very rare to get a smile out of her.

*She is sleeping more often... falls asleep when you are visiting.

*Looking around you to see the TV... very short attention span.

*She has been holding our hands for a few months... but in the past week has been grabbing for our hands more often

*Wanting to leave with us again... follow us out of the unit
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