This month has been a very trying month for us, it feels like it is never going to end. At the beginning of the month RaKelle got really, really sick and had to stay home from school for a week she was not getting better so I took her back to the Dr. and she had a double ear infection, that happened on the 2nd. I was looking forward to Friday the 3rd because I was planning on taking Jaren to the center and hoping that all the kids would be at school no such luck ALL three home sick. On Saturday we were taking care of a dog for a neighbor and it started having a weird cough I didn't really think anything of it at first because the kids had all been sick with coughs, but it was getting worse. I sent the owners a text and asked them what they would like us to do to help her and they said just to let her rest and give her plenty of water and when they returned on Sunday they would take her to the vet if they needed to. I picked her up and held her for a few minutes and I needed to go get some things done so I handed her to RaKelle and she was holding her and petting her and all of a sudden I heard her screaming, "mom, get up here the dog is not breathing" sure enough I came upstairs and the dog had died in her lap it was so traumatizing and she was hysterical. She couldn't figure out why it died on her and why that particular weekend. She kept saying I killed the dog I didn't do anything to help her and I told her that she did, she was there when she needed comfort and that is ALL that we could do. Luckily we have a Veterinarian in our ward and I called him and told him what had happened and he talked to RaKelle and told her that the symptoms the dog was having she had a heart attack or a blood clot and he couldn't have even done anything for her, that helped a lot. But she did say if a dog dying made her feel this way how could she handle it when her dad dies? I told her I didn't know how we would handle it I don't think we will ever know until it actually happens. So to end the weekend from Hell, Ashlyn woke up Monday with a croupy cough and they all started freaking out because they thought she was going to die because that is how the dog started, so I had to take her in to the Dr so that she didn't think she was going to die.
In all this mess we found out that the kids counselor moved to a different office and we couldn't see him anymore because we don't have a Dr in the office that he moved to, I called for a week to find a new one and found an office but they are booked until the end of July. I told them our situation and they put me on hold for a minute and came back and said that we were on the priority list for cancellation and they were in the process of hiring someone new and the next couple of days we got a call and they could get us in June 4th I took the appointment because I think they all need to go in, and not have to wait until the end of July.
This week was going a little better and then I got really frustrated with Jaren and I couldn't function that night because I was so upset with some things that he was doing. My neighbor took him to a movie on Wednesday during the day because I asked him too so I could get things in order and not have him in my way and so that I could take the afternoon to relax and not be so upset. He enjoyed the movie and that friend wants to take him more, woohoo I am so excited. Friday Braxton had to have some dental work done and I knew he couldn't handle it so I ordered him some oral sedation for the procedure, he did great he was still worried but did fine and didn't have any trouble after, RaKelle asked me if she could stay home from school on Friday because her throat hurt and I couldn't really stop her because I wasn't home when it was time for her to be at school, that night she just kept getting worse and worse and finally at 8:30 pm she asked me to take her to Kidscare because she couldn't even swallow so I took her in and sure enough she had strep throat so bad and the Dr said that it looked like her left ear was still infected. We started another round of Antibiotics she is miserable, her fever broke finally but she still sounds very swollen in her throat. I am not sure why she can't get better maybe so much stress that it is taking a toll on her health and she physically needs to not do anything, I am just hoping that she can make it two more weeks at school and then we can all recuperate for 3 months.
I am getting so burnt out I can imagine that they are as well. I did do some research on some non medical homecare and FINALLY got approved this weekend for some personal home care for Jaren they will come in and help him get dressed and they will help with showers, and shaving and they will also do some housework, I am so excited can you imagine what I can do with 10 hours a week of time that an aide will be taking care of him. We start this week!!!! I can't wait. Hopefully the kids will be able to see that I really do a lot and that we are not crazy and that dad really needs help that we are not able to always give. The validation that will come from an aide coming in and seeing how he really is doing is going to be so nice. Not that I want him to be getting worse but for someone else to see it and not be so close to the situation will be so helpful for me and the kids.
Sunday, May 19, 2013
Sunday, April 14, 2013
You will need tissues for sure!!
Bishops meeting
I had the opportunity to go to a training for the Bishops in our stake to tell my story and how this horrible disease is affecting me and my kids and how we are coping. I hope that I was able to touch some of their hearts and that I will be able to help them and others that live in my community. That meeting was on Thursday night and it was so therapeutic to be able to talk about this disease.
Friday the AFTD Conference
I had the opportunity to attend a conference that was put on by the AFTD foundation which stands for Association for Frontotemporal Degeneration. The conference was excellent so much information and I was able to meet so many new people. I purchased a DVD that is titled " It is what it is" and it is a very touching movie that have caregivers talking about how they deal with this FTD. Here is a link to the 17 min movie clip that you can go and watch, make sure you have a LOT of tissues. http://youtu.be/Ue3y60AsMCE. Jaren's neurologist was one of the main speakers at the conference and I am so glad we changed doctors.
Some of the students from the University of Utah Think Tank wrote some songs about the book they are working on, they were able to come and perform at the conference and it was amazing. I hope that they are able to at least put the lyrics in the book it sums up what life is like. the link to this video is here http://youtu.be/Y7YZWoGt3ek. This class is amazing and they are so polite and I sat by most of them at the conference because I didn't know who anyone else was. The song is very touching and you might need to keep the left over tissues handy from the video for this song!!
Touching family discussion
Sunday afternoon I couldn't wait to watch the video so I told the kids that we were going to watch it together, and so I put it in and we watched it, it was silent for the whole movie, I bawled my eyes out I know what these caregivers are and have gone through. As soon as the video was over I asked the kids what they thought about the video, they were all crying as well I knew this was the perfect opportunity to talk to them about this trial we are enduring. They saw me cry for the first time in a VERY, very, very long time. I told them that it was hard to watch and that they are the best kids ever and that I could not get out of bed every morning if it weren't for them they keep me going and they help out so much. I asked them also what the hardest part is about this disease and they said that it is hard because friends do NOT like to come over they are afraid of Jaren and so I asked them what we should do about talking to their friends so that they will feel more comfortable. I also told them that since I will not be working this summer that we are going to make a lot of memories and we are going to do a lot of free or cheap things, we are going to start some memory books and we are going to try and find ways to help get the word out about this disease. The girls were very excited and they want to do a Bake Sale and raise money for FTD research. I am so thankful for the wonderful children I have and for the way that they can turn a bad situation into something inspiring. I told them that if they wanted to think of some fun family activities to do this summer to write them down in the family journal and we would try our hardest to do them. They were very aware of the memories that I am trying to make for them and the traditions I am trying to do with them so that when Jaren is gone we will still have some good traditions that will carry us through and keep us going, like the sleepovers in my room, and the dinners/lunches without Jaren. I told them that I don't know when his time will be to go but that we need to live as though this summer will be the last summer we will have together and that we will have some great memories to hold onto. I was so worried about not having any summer hours and then after the conference and the video I am so thankful for the time that I will have to spend with my family. I didn't realize that you would need tissues for this one as well sorry I hope you have some left over from the other two!!
I had the opportunity to go to a training for the Bishops in our stake to tell my story and how this horrible disease is affecting me and my kids and how we are coping. I hope that I was able to touch some of their hearts and that I will be able to help them and others that live in my community. That meeting was on Thursday night and it was so therapeutic to be able to talk about this disease.
Friday the AFTD Conference
I had the opportunity to attend a conference that was put on by the AFTD foundation which stands for Association for Frontotemporal Degeneration. The conference was excellent so much information and I was able to meet so many new people. I purchased a DVD that is titled " It is what it is" and it is a very touching movie that have caregivers talking about how they deal with this FTD. Here is a link to the 17 min movie clip that you can go and watch, make sure you have a LOT of tissues. http://youtu.be/Ue3y60AsMCE. Jaren's neurologist was one of the main speakers at the conference and I am so glad we changed doctors.
Some of the students from the University of Utah Think Tank wrote some songs about the book they are working on, they were able to come and perform at the conference and it was amazing. I hope that they are able to at least put the lyrics in the book it sums up what life is like. the link to this video is here http://youtu.be/Y7YZWoGt3ek. This class is amazing and they are so polite and I sat by most of them at the conference because I didn't know who anyone else was. The song is very touching and you might need to keep the left over tissues handy from the video for this song!!
Touching family discussion
Sunday afternoon I couldn't wait to watch the video so I told the kids that we were going to watch it together, and so I put it in and we watched it, it was silent for the whole movie, I bawled my eyes out I know what these caregivers are and have gone through. As soon as the video was over I asked the kids what they thought about the video, they were all crying as well I knew this was the perfect opportunity to talk to them about this trial we are enduring. They saw me cry for the first time in a VERY, very, very long time. I told them that it was hard to watch and that they are the best kids ever and that I could not get out of bed every morning if it weren't for them they keep me going and they help out so much. I asked them also what the hardest part is about this disease and they said that it is hard because friends do NOT like to come over they are afraid of Jaren and so I asked them what we should do about talking to their friends so that they will feel more comfortable. I also told them that since I will not be working this summer that we are going to make a lot of memories and we are going to do a lot of free or cheap things, we are going to start some memory books and we are going to try and find ways to help get the word out about this disease. The girls were very excited and they want to do a Bake Sale and raise money for FTD research. I am so thankful for the wonderful children I have and for the way that they can turn a bad situation into something inspiring. I told them that if they wanted to think of some fun family activities to do this summer to write them down in the family journal and we would try our hardest to do them. They were very aware of the memories that I am trying to make for them and the traditions I am trying to do with them so that when Jaren is gone we will still have some good traditions that will carry us through and keep us going, like the sleepovers in my room, and the dinners/lunches without Jaren. I told them that I don't know when his time will be to go but that we need to live as though this summer will be the last summer we will have together and that we will have some great memories to hold onto. I was so worried about not having any summer hours and then after the conference and the video I am so thankful for the time that I will have to spend with my family. I didn't realize that you would need tissues for this one as well sorry I hope you have some left over from the other two!!
Friday, April 5, 2013
Major meltdown
RaKelle and I had a huge fight the other night and it turns out that it was a big relief, we were able to talk about things and tell each other how we are feeling and we both bawled our eyes out until midnight. My eyes were so swollen and red the next day I could hardly do anything the next day. She told me that she wishes she was that little 4 year old girl that didn't know what was going on, but then if she was 4 and he passed away she wouldn't be able to know what happened and she would just be wondering what happened to her dad. She also asked me how I can keep going with out a breakdown and I told her that I don't always keep going sometimes I cry myself to sleep and get up the next day and do the things that I need to do, and I made sure that she knew that. I told her that I am trying my best to be strong for her and her Ashlyn, and Braxton. I also told her that she is ok for feeling cheated and that it was ok to be worried about him because he is struggling and it is very difficult to watch him decline she said that it is hard that it is such a slow process. I think it did both of us a lot of good to have a talk and to cry and hug and share our feelings about what is going on in our lives. I hope that she always knows that I will always be here for anything that she needs and that she can always confide in me and tell me things even if they are difficult to hear. RaKelle I love you so much and I am so thankful to be your mom and watch what a great young women you are turning out to be. You are a great help to me with your dad and we still have a long road ahead but we will stick together and make it through.
Sunday, March 31, 2013
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.
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.
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| 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!!
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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.
Sunday, March 3, 2013
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.
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.
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