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)

Wednesday, February 4, 2009

Not good signs...

Today has been another exhausting day for Cathy. Not being there with her it is hard for me to put it into words... but after talking with family, friends, & the staff I understand that the signs are not good... She is not eating (although tonight Gayle fed her supper, but after he left it all came back up), her color has changed, she has mottling on her hands, she is running a fever, she is unable to keep her meds down, she is weak, she can still walk but they used a wheelchair to take her down to the dining hall, and she has lost her smiles.

I picked my parents up tonight at the airport & they were planning on staying until Sunday to visit us before heading home with Grandma (Grandma has been here visiting us for 2 weeks). So now they are going to watch the kids so I can go over to be with Cathy & Brad. I want to be there with Cathy as much as I want Brad to be able to go to work knowing that someone is there with his Mom... so his mind is on work & not his Mom. (as much as it can be)

Toby & family are also heading down tomorrow from North Dakota. Gayle is working out of town (he has needed to go and been distracted with Cathy the past few weeks, but now he has to)... one state this morning, swung through and saw Cathy at supper time, and off to 2 more states tomorrow & then back home tomorrow night... ugh. While Gayle was there tonight she ate most of her supper... but after he left Barb was visiting and it all came back up. It seems as if she is trying to be strong when Gayle is there. I wonder if this is true... you hear of it happening, being strong for those that you Love... Holding on for them. But with this disease it is so hard to know?

No comments: