Aphasia & other updates

On Monday Cathy & I headed back up to Mayo again for a Speech Therapy appointment. I have to be honest with you... I really thought it was going to be a waste of our time & I wasn't exactly thrilled about driving back up again so soon. But... we went. And I am now so Thankful that we did. The Speech Consultant that we saw was absolutely WONDERFUL! She was so patient & understanding with Cathy. She has a history of working with patients with FTD and she was very knowledgeable about our situation. (It is always nice not to have to explain Cathy's illness to someone. You almost feel like you need to hand out a 3 page information packet.) She explained that Cathy was suffering from Aphasia, a word I had heard before but was not completely familiar with. *Aphasia is: the impaired ability to comprehend or express language in its written or spoken form.* I watched as she gave Cathy a series of tests. It was so interesting to me & helped me to better understand why Cathy has such a hard time communicating with us now.

These are some of the tests: She was able to read single words without a problem... but she was unable to read complete sentences. She was able to recognize about 2/3 of the pictures in a picture book, but when she showed a picture of something happening she was not able to say what it was, she was only able to point out certain items in the picture. (Example: kids sneaking cookies out of a cookie jar, she could only say cookie, but could not say what was happening) She could write her name, she could write simple words, but not complex words or sentences. When she was asked to tell something about herself she could only look away. But when she was asked about something she liked she was able to say, "Dog." She was able to point out shapes & colors but unable to do tasks such as, "put the purple circle on the green square." She was able to follow simple instructions when spoken with few words but unable to follow complex instructions or read instructions. Many more tests were done... these are just ones that stood out to me.

I asked her about sign language & she said that would not work for Cathy due to the areas of the brain her FTD is affecting. She recommended we put together a picture book (I had started one a few months ago... but never finished it, but I am working on it now). She also said to keep what we say to her in the simplest of terms, using only a few words. She said she may only be hearing 2 of the words you say in each sentence. For example if I say, "Cathy, I think it is time for you to go take a shower now." She may only hear, "think & time." So I should just say, "Cathy, it's shower time." And the key to all of the communication is our gestures. We need to be using as many as we can. And of course... Body Language is very important.

Brad & I had already been doing alot of this. But it was good to hear her say it & it just reinforces that we need to keep working on it.

I should tell you about how our morning went before the appointment. I want to start out by saying how "Happy" Cathy has been since she came back to us last Thursday. I have to admit on Thursday night Brad & I had a big heart to heart. I was feeling very overwhelmed, worried, nervous, & scared. I was mostly worried about when I have to say to Brad, "I think it is time... time to move her into a home." From Thanksgiving until last week she had been more agitated, frustrated, & restless. And each day was getting harder & harder. I don't know exactly what has changed to make her Happier again... if it is just the stages of her disease, if the medicine is helping, if having Charlene visit helped, if no longer having our dog here is helping her, or what it is... but I am beyond words Thankful & Relieved... for the moment. I hope it lasts. It is so wonderful to see her smiling & laughing again. Even though she is deteriorating in other ways, it helps us deal with those changes when she is pleasant.

So... yesterday morning I knew we needed to get her in the shower. (The day before she washed her hair in our kitchen sink without shampoo.) Brad & I both tried getting her down there with no luck. Finally Brad went into her room & helped her pick out clean clothes (since she was only planning on changing her undies & had been wearing the same sweater for 2 days). She headed downstairs & came back up in her clean underclothes, no shirt, & unshowered. Almost like when a little kid says they have brushed their teeth but all they did was run their toothbrush under the water & you know it. (not that I ever did that as a kid!) So I ended up having to walk her downstairs to the bathroom (for some reason she still prefers to shower downstairs instead of the bathroom next to her room upstairs). I had to turn the water on, check the temperature (she was going to jump in before checking it), tell her to get her hair wet (she put shampoo in before getting it wet), tell her to rinse (she was turning the water off after only putting her head in the water for maybe 2 seconds & still full of suds)... long story short... it took alot of me telling her what to do... I almost felt like I needed to give her the shower... but I was not sure how she would feel about that. Afterall she was at least letting me stand in there to help her. Once again, being a nurse has helped me be prepared for these situations. I am now realizing I will need to be in the bathroom with her everytime she showers.

This week we have tried to find things to keep her entertained. Since she no longer sits & watches the television. She is almost like a ping pong ball... constantly moving about the house. She has rearranged things in our home, sorted through any papers I leave out, taken all the photos off the wall in her room again, put all the picture frames face down in the dresser again, fought with the coffee maker again (she forgets to plug it in & is impatient with waiting for it to brew), she goes from the chair to the window to the chair to the window to the kitchen to the bathroom to the chair to the kitchen to the.... etc all day long. UFFDA. It makes me tired watching her. I will lay laundry out for her, but she no longer helps me fold it... she has only once since she got back. She no longer does the dishes, she may come over & put one plate away or rinse out her coffee cup but that is it. When we brought groceries home she put the milk & soda away and left everything else out... we did find Taco seasoning in the freezer that I had bought last week. She did however vacuum the steps yesterday!! She also will grab the broom & dustpan about 10 times a day and walk around the kitchen/dining room and sweep up a few crumbs and then put it back. She used to always be so busy & constantly keeping everything clean... We have tried to do puzzles but she puts the pieces in wrong & gives up quickly. I brought out this game Chase got for Christmas where you shoot ducks, kinda like a carnival game, she loves it!



On our drives to & forth she has been reading roadsigns to me again & pointing at the speedometer... I only go a few miles over honestly! :) She also points out deer everywhere. My friend Angie recently called her the "Deer Whisperer"... it made me laugh hysterically... it is true. She almost senses them. She can be in bed & come running out the the living room window at 10 pm to point out a deer. Or see them along the road when I don't even notice them.

I want to say Thanks to Ryan for coming over to our house yesterday to watch Mia & be here when Chase got home from school. Brad ended up being home most of the day... his railroad job is so unpredictable!! But it was also nice for the 2 brothers to have some time together.

Thanks also to Rhonda for coming over Sunday while the kiddos & I went to church. Cathy really enjoys her visits & she brought her donuts!! Rhonda emailed this to me about Sunday:
"Sunday as we were watching the movie Cathy pointed at her sweater and said “Cardinals”. I told her that was a very pretty sweater and asked her if she got it for Christmas. She told me yes. Then I asked her who gave that to you for Christmas and she said Toby and Tracy. I told her that was very nice. She sat there for another couple of minutes and then stood up and went to the center of the room and stood like a model and showed off her sweater. She was smiling. It was so special! She is so proud of that sweater. It makes me smile every time I think of it."

One more thing (this is a long post...I should be in bed already!) Gayle stopped tonight on his way to KC for work. He dropped off Misty and more meds for Cathy. (One of her meds cost $250 just for this month!!) Cathy was already in bed & we didn't wake her up, now that she is on Trazadone it seems to really disorient her if we disturb her. The kids really enjoyed seeing Grandpa for a bit. He will be back through in a few days and spend more time then. We talked about medications, insurance, attorneys, etc... Wow. I am stressed with the caregiving part of her illness... but I am SO thankful I am not having to deal with the paperwork part. I don't know if I could handle all of it.