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, October 24, 2007

Change = Confusion

Today is not going very well... I think changing her surroundings the past few days might be the cause of it. She spent the last 2 days with Ryan & his family while I worked. They said she didn't sleep very well and was up quite a bit. She also was very restless. They did a great job taking care of her but I think movig her around makes things so much worse. Even going back and forth from here to Wisconsin now worries me a bit. And we have to go up for her follow up appt. Monday with the Specialist.

She woke up this morning with the glassy eyed look she gets sometimes. No affect and no laughing today. Brad got home around 5 this morning and when he woke up at noon she was falling asleep in the recliner. This is a first. We have been talking about how she is not sleeping well at night and doesn't nap at all during the day... discussing maybe getting a sleeping pill to help her. (Her Dr. had mentioned at some point she might need one.) Today is the first time I have seen her nap. It was making us both very nervous... she almost seemed drugged, very very lethargic. (I kept watching her breathing and it was regular.) After Brad talked to her about being tired she layed down in her room for about a half hour. (This is also a first) I checked on her and she was laying down under the covers with her jacket on. Once she got up she seemed much better. She was still not laughing but she was at least not as lethargic and her eyes seemed better... she seemed to be here with us more, not out there somewhere.

But then she went outside... I thought she was checking on Rudy (our outside dog) or walking down to the lightpost and back (like she has been doing). Brad couldn't find her outside and then we realized she had gone next door. She told Brad she was, "Looking for Gayle", she had tried getting into their old house... Brad and I just looked at each other and sighed... I quess I need to go outside with her from now on. I tried to talk to her a bit about things being confusing and how that is so difficult, we talked about how they don't live next door anymore and she just looked down at the floor and shook her head. She just said yep, confusing.

Hopefully the rest of the day goes ok... Hopefully tomorrow will be better.

Thanks to Ryan & Gretchen for helping out, they did a good job taking care of her. Change is just to much for her right now. It has been a hard few days for all of us.

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