I haven't been on lately either and just decided to check in today. Partly avoidance I guess. And guilt because I don't call my parents as much as I should because my dad is beating me down and driving me nuts, kind of mumbles and rambles on about stuff and I have no idea what he's talking about, won't directly answer my questions, etc. Then always claims my mom is "too tired to talk" and "you can't understand her anymore anyway." But I talked to her on 9/4 about her feeding tube which she got 9/5. She sounded the same as she did the last time we spoke. But SHE is more upbeat and in better spirits than HE is. I said I wanted to bring the girls up for a visit and he was all "let me talk to your mother, she gets really worn out these days..." but I asked her directly and she was overjoyed! The time before that, he scared me to death because he had me thinking we need to call in Hospice or something and I wasn't sure when things went downhill. So my sister went up to visit and check in on them (it's about 2 hours away), and she said it was the same as far as my mom's symptoms. I don't know what his deal is. Well. I DO, but I don't like it and need him to stop acting like he is.
On the ALS front, her clinic appointment in August showed either no change or improvement in the various things they test- breathing, strength, etc. I realize she isn't "improving" and that she might have just been having a better day, not as tired, etc. But the point is there seems to be no progression of her symptoms since May. She just is sick of the ordeal that eating has become and wants it to stop being the center of her life. So she said she was ready for the feeding tube. Got that on the 5th and the procedure went fine.
Emotionally it makes me sad because my oldest daughter is 7 today and she got nothing from Nana.
My mom is the type that a card shows up ON your birthday and she normally calls her at 6:30am on the actual day to sing her happy birthday. Nothing this year. She didn't even mention her birthday. But my glorious in-laws called this morning at 6:30 knowing my mom wouldn't be able to do it and they sang to Caitlin. And we are going up to see my parents this weekend (God help me). I'm so glad my mom is so happy we are coming. But my dad is going to be a beat down. :-/
Anyway, sorry to ramble! This is why I don't post. I feel like I wear y'all out and I don't have much to contribute. Ugh. I hope everyone is doing as well as can be expected. I think of you every day and wonder how everyone is. Glad I checked in.
Jamie