Changes again

Honestly I have been both anxious & nervous to go visit Cathy since her bad day last week. I was afraid to see her worse... yet wanting to just 'be' around her. The kiddos & I went over this weekend and I did notice a few changes... one for the better, the rest for the worse... I am Thankful for at least one small glimpse of 'better' in the middle of all this.

Better: it seems that she is more 'alert' (for lack of a better word). Her eyes at times seem to have that old sparkle back. Most likely this is due to the change in her meds. (I think they took her off the Seroquel & lowered the dosages of the rest of her meds...) She is less 'blah' & her eyes do not seem as distant. I realized while sitting with her in the main dining room Saturday that she reacts differently to the people she knows vs. the people she does not. (I knew this in the past, but have been worried things were changing for the worse) People would walk in that she didn't know & she had no reaction. But when a family friend walked in she was all smiles & later when Gayle walked in she was all smiles again! I also asked her if her Buddy John had visited her... and she turned her head towards me slowly with a huge grin on her face!!!! John had visited on Friday & she remembered! Her eyes glowed & she was grinning from ear to ear! - Today I talked to Brad and he said this morning she greeted him with a big smile & actually got up and came walking towards him! (She does not always have the strength to get up on her own anymore... it just depends on the time of day & the day in itself.)

Worse: Swallowing, Mobility, & Weakness... Barb & I were there for snack time both days. I was Thankful when we got there on Sunday that Barb was feeding her... both the kids had alot of questions. (And it was at that point that I realized I cannot take the kids at eating times again! More to follow below.) Barb mentioned that Hospice was having a meeting today about feeding, some of the girls are uncomfortable feeding her & they were going to help them out. There is a BIG change in her swallowing/feeding in just 2 weeks. 2 weeks ago she could feed herself with help on and off but Sunday she could barely lift her spoon. As she lifted her 'baby' spoon up she would lean forward with her mouth open... like a baby bird... and she could not get her mouth & the spoon to meet sometimes. Barb would have to help with each bite. In fact Barb fed her most bites. Strangely she could grasp her 'thickened' chocolate milk glass & attempt to drink it (it seems that she is very thirsty and she wants to gulp it down). With almost every bite she would gag... most likely aspirating. She used to be able to cough at this point, and then when she could no longer cough she would make a coughing sound, but now she can only open her mouth & gag. It is awful to watch. She turns slightly red, her eyes water, her mouth is open, & she gags.... she aspirates. (When a person aspirates their lungs can usually remove the foreign object and carry it out of the body... as long as Cathy is active she will have a better chance of her body doing this, but once she is no longer active these foreign objects will lead to infection...and that is one of the main causes of death with this disease) To be quite honest it is both scary & heartbreaking to see. Barb is so good with her... patiently helping her eat, holding her chin up, talking to her softly...

I also noticed her walking. As we walked down to the main dining room Saturday I thought... this is different... she is looking down at her feet, her shoulders are slightly slumped over, her speed is slower, & her knees seem to be lifting higher, like she is working harder for each step. (We used to say how she would walk like she was 'on a mission'... just take off with or without you looking straight ahead) And then Saturday night we went Ice Skating & it hit me... (it was only my 2nd time on skates, thanks to the schmidts for letting me borrow skates, or maybe not... LOL... it was Mia's first time & she did a great job!)... as I was skating I realized I was watching my feet... when I would get brave & look ahead I would start to wobble & look right back down at my feet again & lean forward so I wouldn't fall... JUST like Cathy was doing in the hall! She is going in the opposite direction... I am learning how to skate & she is trying to remember how to walk!

She is still very weak... she tugged at her pants to let me know she needed to go to the bathroom. I helped her by pulling her pants down. She doesn't remember to wipe or wash her hands... you have to do this for her. And then you have to help her pull her pants back up. She is still wearing panties for now... And there is now a mat on the floor by her bed in case she falls out... trying to move around in bed or trying to get up & down. Since it is so hard for her to changes positions. Half of the time she needed a boost from me to get in & out of her chair... other times she was able to rock herself up on her own. She is still more tired. Taking naps, laying down while you are visiting. She also still enjoys watching TV, although she does not react to the funny scenes, she reacts to the music. She smiles whenever there is a song on. And Sunday when the church group was singing she was intent on listening to them, smiling each time they would look her way.

Kids: We have wanted to not shelter our kids from Grandma's illness. And up until this point we have been very open with them... taking time to talk with them & letting them ask questions. But the looks on their faces Sunday watching Grandma try to swallow... I just can't do that. Mia asked me, "Mom, is Grandma dying? Why can't she eat right?" And Chase just stared at her and then would look down and then look back and then look away again. After we left I talked with them about things. I explained the best I could what was going on. Chase said he still wants to see Grandma... but not when she is eating if that was OK. As always he says, "I don't want to forget Grandma. I don't want to forget all the fun times we had together like when we went to get ice cream. I want to see her." And Mia just repeated what he said... as Chase rolled his eyes at his little sister for repeating him... she still is too young to grasp it all, but she is grasping enough. So from now on I will try my best not to take them at eating times... and if we come at a snack or meal time... I will have them sit in her room & watch a movie. I am mad at myself for not removing them from the situation at the time Sunday, but we were there in the middle of a church service, I kept thinking it would be rude to leave, but looking back I should have taken them to her room...

Thanks to everyone for their thoughts & prayers this past week! And thanks to the staff at the NH & Hospice for all of your care for Cathy. Words cannot express our gratitude for all everyone is doing.