When I got up this morning at 7 she was packing her suitcase & needed help with it... the new zipper had her confused, but we got it figured out. I explained we weren't going back to our house today. However we were going to LaCrosse. Her eyes got big & she knew exactly what that meant... another visit to the Dr. She walked out of the bedroom shaking her head.
Jean stopped by at 8 this morning to take her out for coffee. They were out for about an hour & she said Cathy communicated fairly well with her. She did clearly say something like, "life sucks..." She was distressed about going to see the Dr. again and repeating the testing. Jean stayed and went through some of the old pictures with us. We found a picture of Gayle, Toby, Brad, & Scott with their fishing catch... Scott is Jean's son that the boys grew up with. They have alot of fun memories with him! I also got a good picture of Jean & Cathy together today.
We headed to LaCrosse at noon for her appointment. Rhonda came up to stay with our kids and Ryan & his family followed us to the appointment. I am so glad Ryan was able to come. Cathy was also very happy Ryan was coming. On the way there she said, "I can't believe... Gayle... not...", I reached over and put my hand on her arm and said, "are you sad that Gayle isn't coming?" and she said, "nope". I asked her if it was okay that he stayed home to go hunting and she said, "yep". She seemed more relaxed walking into the clinic today... Ryan walked with her and hugged her to his side... she smiled & laughed. We met with a different social worker today, Terri, she was very helpful & seemed to care about what we were saying. She offered some advice to us that was helpful. While we were with her Cathy repeated the testing... Hooray! She did it!!! (last time she refused) Then we went to her room and waited for Dr. Loepfe. As Ryan & I walked into the room she said, "alligator." (One of the testing questions is naming animals... today she could only name 4, repeating 2 of them & last year in November she named 13.)
Ryan sat next to her & she put her head on his shoulder for a second & smiled. (It almost made me cry.) I sat where I have the past 2 times & Gayle's seat was empty. I think it was good in someways he didn't come... it allowed her to be independent & not worry as much about answering correctly... she always seemed to look at him for help & today she had to try and answer on her own.
Dr. Loepfe came in & greeted us. He reviewed the testing & notes from the Social Worker. He said he was 'shocked' at how fast she is progressing. His concern worried me mostly because he also said that since it is progressing so rapidly it is more likely to be genetically linked.... genetic... my big fear!!! He did say that genetics is obviously not his area & that we will get more answers when we go to Mayo in Rochester next month. We talked again about how she is doing: eating (better, she had lost another 5 pounds), sleeping (not so good), getting into trouble, depressed (she said no), etc... He feels that she is doing as well as can be expected & that we should continue taking it one day at a time. No meds at this time other than maybe something to help her sleep. (We have an rx for Trazodone that I will try when we get home next week.) Ryan was able to ask him questions that he was worried about. Again Dr. Loepfe said a patient with Alzheimer usually has 15-20 years (and that is usually not diagnosed as quickly) and a patient with Pick's has usually 7-10 years from onset of symptoms... and unfortunately Cathy is progressing quickly. He mentioned that we should also start thinking about Hospice care.... Hospice... so we are ready when we get to that point, since things may continue as rapidly as they have... or... things also could slow down, everyone is different. Unfortunately the stages are hard to pinpoint, some people skip some & go through them differently, & everyone progresses differently... basically nothing is black and white. There is no book to read or path to follow. We are out on our own... but it does give us comfort to at least talk to him. He at least can comfort our fears and concerns. But he can't give us the concrete answers. I feel like I can see it in his face, that he wishes he had the answers, that it frustrates him to not be able to tell us exactly what is going to happen, he is compassionate & I am Thankful for that. It would be a hard job...
He also looked at me & mentioned that I looked better today, that he was worried about me last time... and worried how we were doing taking care of her. I feel it inside also... I don't think I am letting it weigh me down as much. I think that it helps that I am not working & that I am in a routine at home now. It also helps to have this blog... a place to put my thoughts & feelings... like giving it to God & letting him hold it for me. (Tracy is always telling me to do that with my worries... & she is absolutely right! My brother brought home this little wooden box for me when he went to Mexico... I have written down my worries & placed them inside it... Giving them to God is what is getting me through.)
"Be Still & know that he is God." Psalm 46:10
So, we go back to see Dr. Loepfe in 3 months. And we go to Rochester in a month. And in the meantime... we continue to do our best & enjoy the time we have.
Everytime I walk out of our bedroom I see this... I gave this to Cathy a few years ago... & she hung it outside the room we stay in up here... I look at it and think about how she used to be, how this was/is her house, she decorated it and made it hers, this is where she is supposed to be, & how you just never know what life holds for you...
When we got home tonight Cathy seemed fine. We headed down to Hoyer's for a KFC supper... Yummy. And then came back up to hang out with the Hansen's & Gary. Gayle was sitting on the couch & Cathy walked into the kitchen... when she walked back out she walked over to him pointing & said, "You...??????" She couldn't get out what she wanted to say... but she had an angry look & was MAD! I can't ever remember seeing her that mad! We all looked at her in astonishment & Gayle looked confused... Rhonda & I tried unsuccessfully a few different times to figure out what was wrong. We asked her if she was mad he didn't go today... "nope", was she mad he didn't come down to eat with us... "nope", could she write it down... "nope", and a few other things... "nope". She pointed at him like that at least 3 different times tonight. ???? She sat next to him while we watched "Chuck & Larry" (HILARIOUS!) but you could see it in her body language she was upset... hopefully by morning things will be better. Hmmm....
Toby & Tracy left North Dakota at 9 tonight. Nicole flew out of Salt Lake City into Chicago this morning (2 1/2 hour delay) & is driving up in the morning from Janesville. Hopefully Brad will catch a train out of Clinton tonight (or maybe deadhead... be bused or vanned back home) & make it up here by tomorrow night. And we can all be together for Thanksgiving.
The scary thing about Thanksgiving... is that Cathy is not able to help... she is here/but not here. That means that us girls have to take over for her... luckily Barb & Rhonda can help us through. The kitchen is not my favorite room of the house... I am usually in charge of the green bean casserole or jello salad... something I can not screw up. But turkey... urgh...
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