Helpless Feeling...

This morning at 9:30 my cell rang... it was the nursing home... Cathy was having a bad morning. She noticed a red truck parked outside & had started getting agitated. She had all her things packed up (we didn't give her a suitcase so I am guessing it was in trash bags from the NH) and was saying, "Gayle, On Fire!" and "Brad & Beth, On Fire!". The nurse was hoping we were still up in Wisconsin... but we weren't. (I really like this nurse she seems so compassionate & has such a calming presence about her!)

Helpless... we just wanted to jump in the car & go see her... I suppose this is what it feels like when your child goes off to college??

I thought Barb S. might be working today so I called Jean first. And actually she was already on her way there to see Cathy. So... she said she would call me later with an update. So... we waited. ~ Jean called about a half hour later & said Cathy was starting to settle down. When she had gotten there she had been very agitated. Gabe, one of the social workers, was trying to help her and he had actually gotten her to unpack her things. He was trying to explain that the truck outside wasn't Gayles or ours... that it was the city's truck. (Thank You Gabe & Jean!!!)

Jean called me this afternoon & said that Cathy kept saying, "Beth, On Fire." So she thought maybe I could talk to her on the phone. I said, "Hi, Cathy, it's Beth. Chase is in school today. We miss you." She repeated, "Chase is in school." Jean said she was nodding her head yes & smiled. Then she passed the phone back to Jean... she usually only last about 20 seconds listening on the phone anymore.

When Cathy was living with us she would have a day that was off every week or so. I am hoping that tomorrow will be good again. I am hoping that the staff is understanding. I am hoping that Cathy doesn't get worse in the anger & frustration area. I am hoping the weather is good so we can see her this weekend. I am hoping alot lately! HOPE

I put a call into both her Neurologists today. One to update them on how things are going & discuss the follow up appointment. And the other to see if his staff would be willing to come to the nursing home & do a mini information session on FTD/Pick's. I had heard from a friend (Thanks Sue!) we met at Mayo that they had done something similar when their son moved into his care home. I think it would be so helpful for the staff to understand this disease. It is similar to the Alzheimers patients they are used to... but yet so different.

Being this far away is so difficult... after spending so much time with her over the past year. I can now understand how Toby & Tracy have felt... being far away and not able to help. I just want to pack our things up & move North! ~ I know Ryan will be moving there on Friday. And I am hoping he will be willing to help with this part of her care. Having one of her boys close will be such a comfort to her, I feel like she thinks we have abandoned her. We are lucky that she has so many good friends up there... they have all been so Amazing!! People offer help... but you feel bad taking it because you know they have their lives to live also. But right now, we need them so desperately! And we are so Thankful for their support. How do you Thank someone for giving in that way??... it is the true meaning of friendship & compassion!!! Cathy is truly blessed with good friends!