changes for Jaren

Jaren is not doing so well the pain is almost unbearable he has a hard time getting up in the morning we have to help him out of bed.  His memory is getting worse he can't remember things that happen at all, the other day he had a hard time remembering who RaKelle was it seems to take his brain a lot longer to process things than it use to.  I am trying to be patient with him but sometimes it is very hard and frustrating that he doesn't know what I am saying to him and we can't have a conversation like regular people.  We ended up at Instacare today because I thought he had pneumonia again because his sugars have been crazy, and the last 3 times he had pneumonia his blood sugars were high and he didn't have a fever or a cough luckily today everything looked clear.  Maybe I freak out about stuff like that but the worry on my kids face when his sugars are high is not fun to watch, it was to scary the last time he was hospitalized and I don't want to relive that again.  He has a hard time getting dressed by himself because of the pain, he acts more like a kid everyday, he laughs at things that are not funny but to a kid (or him) they are funny.  

I have to write a conversation I overheard between Jaren and his sister, she came to visit the other day I had a hard time not laughing out loud.  This is how it went

"I decided to come and see my brother before he disowned me." 
Jaren "it's to late I already did" 

She didn't know what to think or say, with him being so childlike his honesty is really showing, he says it like it is and if you don't like it to bad, he doesn't have a filter anymore and he doesn't realize he could be hurting someones feelings, he seems to do that to the kids a lot he can't tell when he hurts feelings.  He can't carry on a conversation anyway but he can sure add his two sense in when he feels like it.

Our home teacher came and took him to the Oz movie and he enjoyed it so much, I asked the guy that took him if he did ok and he said you can definitely tell that he is having a harder time sitting still, and he said that the next time he will take him when it doesn't have so many people because he could tell it overwhelmed him and he got really anxious.  I am so grateful for the people that help me and take him out, so that I can have some time to myself.  He won't be able to do it much anymore if things keep going to way they are going so I will enjoy it while I can.  He is NOT fun to watch TV with or a movie, he comments about everything and he laughs really loud at parts that aren't that funny, he always looks at the kids or I and laughs and says some kind of comment, we have learned to just ignore it unless he gets out of control and then I have to tell him to calm down a little bit, he usually complies and does it.  

Spring Break!!

Spring break has been so much fun, Ashlyn turned 12 on Wednesday and so she had a few friends over for a birthday party and we made our own pizza and an easter egg hunt and of course cake and ice cream.  I think she had a lot of fun she finally has friends that are nice to her and they were so fun to have over.  On Thursday we took a trip to the mall because we have not been there forever and we needed to stop at the Apple store so we were walking through the mall and we passed build a bear the kids begged to go in and look, so we went in and I had a great idea! I asked them what their favorite bear was that wasn't too expensive and they each picked one and we recorded Jaren's voice for each of them that say "I love you (insert name)"  I have tried the books that you can record your voice but the batteries die to fast.  They will love these bears and they can take them to bed with them and they can also always remember his voice and how much he loves them.  

Friday we went to Fotofly and had a family photo session and it was a lot of fun and they did an amazing job, the kids took their daddy bears and they had their picture taken with the bears and Jaren it was so sweet.  

Jaren, RaKelle, Ashlyn, and Braxton and their daddy bears!

Here are some other of my favorite photos that were taken!

these pictures will be cherished forever!! 

University of Utah

We all went to the University of Utah a couple weeks ago to the class that is writing the book, it was so fun we enjoyed it and they were so kind.  I was a little nervous but once we got there it was so easy to talk to them.  I guess it is easier to talk to a group of people when you know a lot about the situation and since it was about Jaren and the disease it was very easy to answer their questions (well most of them) one of the questions was a little bit hard but I think I answered it the right way and that it made sense.  Elise and Lindsay were so kind and brought all the kids a lamp for helping them with this book project, Jaren and I got movie tickets and free babysitting!! I am so happy to help them and I know the book will be amazing I can't wait until I can read it.   

Snow Shoeing

We had the opportunity as a family to go Snow Shoeing through the Alzheimers Association and through and organization called Splore who takes families that normally couldn't do things like snow shoeing because of a disability.  We had a great time met new friends, they figured we walked about 11/2 miles Jaren couldn't quite make it the whole time, he stopped about a mile and said I'm done I can't go any farther, so him and I and one of the Splore ladies stayed with us and Braxton made his way back to stay with us.  The weather was beautiful and we had layers on at the beginning and by the end we were down to short sleeves.   I was a little worried about Jaren because his legs and feet and arms have been in so much pain lately he can barely walk, today his legs were not working and so he has been on pain pills a lot lately.  I was even a little concerned about leaving him while I went to church, he made it Braxton did a great job taking care of him today.

I don't know what to do if he can't get around anymore I can't quit my job, and I can't afford a nurse for round the clock care.  I don't want to put him in a home, I think my kids would fall apart.  I don't know what to do I guess just a day at a time and sometimes hour by hour and then when the time comes we will make decisions together as a family.

The girls from the University of Utah undergraduate program have been coming over and they are so nice and my kids have had so much fun with them.  They are very easy to talk to and get along with.  We are doing a video interview for them on Friday and then we will be going to the class for Q&A and to tell a little bit of our story.  I am excited to get the word out.  I think if I am not willing to share my story people will not know what to do to help people like us.  I try my hardest to be strong and do everything I can BUT I can't do it all alone I need support from people to help me out.

We have Parent Conferences this week and I am a little worried about going because I don't like them.  I always feel like a crappy parent after I find out how far behind they get because I can't sit down with them every night for homework.  I went to RaKelle's this last week and she is doing really good, her grades are all up and she isn't failing any classes yet.  I know she is struggling with school and life in general but she is doing some great things.

Braxton is having major anxiety issues still, he doesn't want to go anywhere but if I have to go somewhere he is crying by the time I get home because he is so worried.  He has been leaving home for a little while with his best friend Rion but he always comes back with in an hour and then he will go back for a little while longer and then home.  Sometimes I have to send Ashlyn with him or RaKelle so that he will go and not worry about things one time RaKelle went with him and they stayed pretty much the whole afternoon.  

Why do kids have to be so mean?

Somedays I wonder why I send my kids to school, some kids are SO mean.  I took Braxton into the counselor today and while we were driving up there he made a comment to me so I asked him to go into further detail, he told me that some people at school are teasing him about his dad being sick and telling him that he will never get better and their dad is better because they aren't sick.  I have never wanted to hit a kid so hard in my life.  He mentioned it to his counselor as well with huge tears welling up in his eyes.  I have never cried at one of their appointments until today.  Ashlyn has told me before that she is having the same problem but she lies a lot so I never know when to believe her but now I know she is telling the truth and I am not going to put up with it. 

I couldn't believe how grown up Braxton sounded as he was talking to the counselor about it, he asked Braxton what he did when he was upset about that and Braxton said I walked away to be alone for a minute and took deep breaths and waited to go back to play with friends until I didn't want to punch them anymore.  I couldn't believe it what a great boy he is turning out to be.  I just feel so helpless and sad that the kids have to put up with stuff like this, it's not like we asked for this crap to deal with.  I am sure one day we will look back and know that we have learned something from this but right now I just want to keep the kids home and never send them to school again and just stay locked up in my house and never leave so they don't ever have to hear anyone making fun of them or their dad. 

RaKelle is also struggling a lot she is fighting me on taking seminary, she is very adamant about NOT taking it.  I know she is having a hard time with the church and with Young Womens right now but I don't know how to help her.  I told her she had to at least take it the first semester and then if she still felt that way she could stop and then then take it again in High School.  I guess she is having problems with the fact that it isn't fair that her dad is struggling so bad and why she can't do anything about it and that she is going to lose her dad and she is frustrated and upset with God for taking her dad away from her.  I need to do a better job at scripture study and family home evening to help point out that it isn't anyones fault and that we can not make it through this trial without faith and support from the church and prayer to help us through day to day.

Sweethearts Ball

Jaren and I have been going to the Stake Valentines Dance for 16 years this year and every year he does less and less.  The dance was our very FIRST date.  We went with a couple that live by us and it was fun.  Jaren didn't do a whole lot but I did some line dancing, he didn't even want to slow dance with me, one time I finally got him to dance with me and he complained that his back was hurting and wanted to sit down so we sat down pretty much the whole night.  I think it was a kick of reality that we can't do things like we used to.  I don't know how many more we can go to it is hard to sit and watch all these couples dance and have fun and we just sit on the chairs and watch.  It is hard to think that we used to actually know how to do a lot of dancing and we were pretty good at it.  The couple that we doubled with was very nice and they can dance it was nice I just wish that Jaren would have been able to do more. 

I know it's a "Sweethearts" Ball but I wished they could have played more line dancing songs so that I wasn't sitting all night long.  Oh well, maybe we shouldn't go anymore it gets harder and harder every year. 

Doctors appointment

We went back up to the U of U for Jaren's neurology appointment to go over his test results from his neuropsychological exam and his MRI that he had back in September, those appointments are always a little overwhelming but we made it and it wasn't to bad until after we got home and it all set in. 

They called us back and did the usual vitals and then they always do a mini mental exam before the Dr. comes in and at the U it is always a student first and then they both come in together and talk, this time the Dr. and the student asked me to come into their office alone with out Jaren so that they could talk to me.  I went with them and they had his MRI's pulled up on the computer and went over them with me, they said that the report states that there has not been any change but they are going to question them because they see significant changes on the scan.  They showed me the scan from the last time and then the scan from Sept of 2012 and I could see the changes and I am not a Dr. I was pointing things out to them and they were agreeing with me that I was not crazy and that the changes were very significant.  The results from the Neuropsychological exam showed that he struggled with it but that he was very compliant and did the best he could.  He has a hard time following instructions and he scored 1 out of 10 on some of the test and 2 out of 10 on others which is not good, they which makes sense and it coincides with the MRI.  His brain is shrinking and you can definantly see that.  I couldn't believe the change.

He talked to me about how tough things are going to get.  I asked him to give me a timeline and he said there really isn't a time line but the brain is not a threaten to his life now, he said that people that have Dementia are more likely to get hit by a car because they don't know not to walk out in front of one, or forget the chew their food and choke to death. 

We then discussed some options of where I could get some support from and I told him that I had been working with the Alzheimers Association and that they wanted to use the kids letters on a national level.  He stated that he has an undergraduate class that is trying to come up with a curriculum for school age kids that would help them deal with terminal illness in their families and asked if I would be a guest speaker for his class and if they could call me with any questions and of course I said YES, I would love to help.  This is why I am going through this trial so that I can help others and tell them what I know to save them a lot of trouble, I told him that a caregiver is a caregiver no matter what disease the patient has it is hard work and sometimes frustrating and overwhelming.  It feels really good to know that with everything that I am going through that maybe in the future I can help those that need the help, that I had to fight for day and night.