Celebrate like it is the last!

I haven't been on the computer much lately so I haven't been updating the blog.  I have been so busy with everything that I haven't really had a lot of time.  Jaren is needing more and more care, work is busy they have been asking me to sub in the classrooms a lot lately and it is hard to work all day when you are not used to it, plus I have to come home at my lunch and feed Jaren and then go back.  Teachers are very, very under appreciated, they are amazing to be able to teach that many students every single day. 

This Christmas was very special for us.  I have always been told to celebrate like this is the last Christmas and for some reason I didn't really think much about it, until this year.  Jaren has had 4 friends from the care center pass away in the last 2 months and so this year it has hit me really, really hard that this might be the last Christmas.  The men that passed away were walking, and talking and laughing last year at this time and now they are gone.  I hate thinking about this being the last one but I took my kids all out on a date by themselves and we also all went together and I brought it up to them telling them that we need to think about things that we would like to do with him here and that we can do when he is gone and that this just might be his last Christmas.  They all were very good about it and we were able to talk about some very important things that are going on in their lives and some of the things that they want to do to always remember him. 

We have been really blessed this Christmas, we were kind of spoiled.  But it was so worth it to see the look on all of their faces on Christmas morning.  It was a bit different this year as Jaren has been in a lot of pain and is now falling out of bed but we just made due with the blocks in the road and we helped him open his presents because his hands would not work that morning.  We are so blessed to know so many wonderful people that really care about us and helped us out this Christmas.

Braxton told me a few months ago that he knows that Santa is real because Jesus used his priesthood to give a man a bushy, white beard and magical powers, it was so cute.  Then a couple weeks later he looked at me and asked me if Santa was real, I told him that I did help Santa out with things but some things are unexplainable, Christmas isn't so much about Santa it's about the magic of Christmas and how everyone wants to help everyone and sometimes we even get presents that I have no idea where they came from, he looked and me and said I think Heavenly Father is blessing us, he knows what we are dealing with and he wants us to be happy, I had a hard time not crying, but we were driving down the street and I needed to see.  It was so touching to hear the perspective from a 9 year old he is such a sweatheart and I don't know what I would do without him.  He is growing up way to fast and he is doing a great job of helping me with Jaren and he takes care of me and he is not afraid to hug me in front of his friends.

RaKelle and Ashlyn are doing so good in school this year, Ashlyn brought home a 3.7 GPA and she was nominated for Lion of  the Day.  RaKelle brought home a 3.0 GPA and she is really having a good time this year.  She said to me the other day the she wants to take seminary again next semester, I knew she would like it if she just tried it.  They are both growing up to be great young women and I am so lucky to be their mom. 

The Alzheimers Association called and asked me if I would do a presentation at advocacy day at teh State Capital and bring my kids as well I am nervous but excited.  We will be there on January 27, 2014.  It will be fun and hopefully it will be worth it.

Update! update!

A lot has been going on here at our house.  After I met with the Mayor I did my first support group meeting and it was good there were not a lot of people there but the ones that were, were able to meet other caregivers.  The next day Jaren woke up throwing up so we ended up in he hospital, ON HIS BIRTHDAY, what a way to spend your birthday huh?  NOT it was not a fun day they had to admit him to make sure that he was getting better and we got to come home the next day which was good, but he didn't really get a whole lot better for a long time after that.  He now has an aide that comes in the morning to help get him up an ready for the day, like eating breakfast, taking blood sugars and she takes him on a walk.  I have to be up and have everyone ready for the day by 7:30 am to be to work by 7:45 am it is nice because I get home at 11:30 am but very hard to get up so early and get everyone ready including myself.

Meeting with the social worker

We went and met with the social worker at the Uof U to see how things were going, he said that we were doing a really good job with things but that I need to break out of routine once in a while so I don't get burnt out.  I have a hard time leaving Jaren over night so he suggested that I leave the kids with someone and him and I go somewhere, I thought about it and it seems weird to me to take him somewhere because it is a lot more work for me to be gone somewhere that he is not familiar with and the kids need a break too, so we decided to go on a little mini staycation!!

Park City

Our little getaway was the best thing we have done in a long time we stayed close to home but we were able to get away and enjoy each other and we definitely broke out of our routine which was so nice.  We left here Thursday afternoon and got there about 3:30pm and of course the kids were really excited because our hotel had an indoor pool so we went swimming ALOT they were in 7th heaven.  Jaren didn't really want to do a whole lot so he stayed in the room a lot and I took the kids swimming.  I even got in with them once.  We did a little shopping at the outlet stores but didn't buy anything.  We wanted to go back on Friday to the outlets. 

Friday morning we got up went swimming of course and then got ready for the day went shopping and then in the afternoon my sister came up with her husband and he grew up in Park City, he is a farmer up there so his brother and him took the kids and I horse back riding! Jaren stayed back at the cabin with my sister that was nice of her to stay with him so he didn't wander off.   It was sooooo fun the kids loved it, it was a beautiful day and they were so nice to take us.  If you ever go to Park City call Red Pine Adventures for horse back riding in the summer time and snow mobile tours in the winter.  They are excellent and they were so nice.  After the horse back riding we went and stopped at his parents house and got to talk to them for awhile, when we left we went and saw the sheep that they own and then we went to dinner with them.  Saturday came way to fast, and it was time to go home.  We did go swimming one more time though before we checked out.  After we got ready and checked out of the hotel we went and toured the Utah Olympic Park, it was the neatest thing they have a museum that you can tour for free, they have a bobsled that you can sit in for pictures, and they let you sit outside and watch the skiers train it was amazing!! they did ariels and landed in the pool it was really cool to see.  They also have a free chairlift ride that you can ride up and then walk down a little trail back to the main building.  They also have some really cool zipline rides too but they cost so we didn't do those.  I am so thankful that I was told to actually go somewhere, we have not been anywhere for a very long time.  I guess I was waiting for someone to give me permission to actually take a break and not feel guilty about it.  It was hard to take Jaren but he did really good and it was really nice to enjoy some time with just me and the kids that was fun and not to much work. 

Bake Sale

I didn't mention the bake sale, RaKelle and Ashlyn put together a bake sale for a young women activity for the AFTD.  The AFTD held a food for thought week fundraiser and their goal was to raise awareness for FTD (frontotemporal dementia) in all states in the US and in Canada.  The girls did an awesome job, we got donations from a ton of generous people that shared their talents with baked goods.  I was very pleased with the great job they did.  They raised $735.00 for the AFTD and I know it will go toward a lot of good things for that foundation and we were happy to do it.  It taught my kids that we can do things in our own community that will help a lot of people all over the country and it didn't take that much effort.  It was freezing cold that day but it could have been worse it could have been snowing so that was a blessing.  They learned how to collect money and give change.  They got to talk with people and tell them how it is living with a loved one with dementia.  I hope that they will remember how good they felt when we counted how much they raised and how many people came to support us for this cause.  I hope that they will do more in the future.  I am so thankful for the AFTD giving us the opportunity to help many people like their dad. 

Meeting with the Salt Lake County Mayor

Last Monday I was sitting at the computer and I decided to email the Salt Lake County Mayor, I received a phone call the next day on the way to Braxton's school and they said they recieved my email and that they were having an open door for the people in the community to come and talk with the mayor about concerns they have, he said that the appointments had been full for quite sometime but that 2 minutes after he had read my email a lady called and cancelled her appointment, so I was able to go and meet with Mayor McAdams.  RaKelle was able to come with me, when we got there we filled out some paperwork to explain what we were there for, I went back with a guy from the mayor's office and he explained to me how things would work, they had called the director of Human Services to sit in on the meeting and they listened to me and told me that something was happening with Valley Mental Health and that Salt Lake County was taking it over and so they are able to make changes to the policies and things.  I said it is very important to stop basing services on age it should be based on illness and they all were in agreement with me.  The mayor happened to be the same age as Jaren and was able to relate.  I felt like I was able to accomplish some things and even if they don't happen in the next few months it will help a ton of others in the future.  I took teh letters from my kids and gave them a copy of them, I also gave them a bunch of websites that they could go to for more information on MLD and FTD.  I feel like these trials I am living through will help people in the future and they don't have to ever feel like I do about no respite care.

School is coming fast

I can't believe it is time for school to start again.  This summer I was hoping to do a lot of stuff with the kids but we ended up at doctor's appts and tests at the hospital, I am very proud of my kids though for keeping a good attitude most of the time, minus all the fighting.  I am ready for school to start hopefully it will cut down on the fighting we will see.  Ashlyn starts school on Thursday and the other 2 start next Monday.  They have the 7th graders go to school for one day before the rest of the students so they can find all of their classes without the 8th, and 9th graders. 

We had a good friend come over tonight to help Jaren give the kids a blessing and I had no idea that Jaren was clueless about how to do it and what to say.  I know he has a hard time remembering the words that he has to say so I always have someone here to help, but this time he couldn't do any of it and our good friend did a great job helping him.  I hope he was able to feel the spirit I know I did.  When all the kids were done he asked if I would like one and it caught me by surprise but it was very touching and I know I will be able to handle the trials that are ahead with the beginning of school.

I got a call the other day from the school that I work for and I get to start September 11, 2013, and my hours have changed from last year.  I will be working from 7:45-11:15am Monday-Thursday and 10-1 on Fridays.  It will be difficult to get everyone out of the house by 7:30am but I am way excited to be home so early so I can get some things done before the kids come home from school.  I am looking forward to the new school year.  I am really sad though that I won't be working under Jayne this year she is an amazing person and I will miss her terribly,  thank goodness she will be in the same building still I can still go talk to her. 

some good, some bad

Good

I have been in the process of trying to start a support group for FTD (frontotemperal dementia) in the evenings for the caregivers who work during the day like myself.  I finally got word on Thursday that I got approval to do a support group at the Bingham Creek Library for an entire year, it will be every 2nd Wednesday of the month at 6:00 to 7:30pm I am so excited.  I know support groups are sometimes the only thing that gets people through the day or week.  It is people that know what you are going through and that can empathize with you and you can say anything and they know exactly what you mean and they validate you and your thinking process.  I can't wait to get started.  The first one will be September 11.  I think that this will also be very therapuetic for me as well.




Bad


There is always some bad with the good, and I know this isn't just me going through this part but I seem to not be able to handle it as well with Jaren changing so fast and my blood pressure being out of control.  When I went in to the doctor for my BP it was 180/110 I started medication and it stayed high but when I went in for a BP check on Thursday it was 122/88 I can't tell you how relieved I was.  The kids have been fighting so bad lately I finally couldn't take it anymore on Saturday and sent everyone to their rooms so I could be alone for a minute.  RaKelle has been so rude to me lately, and if she isn't being sassy and rude it's Ashlyn, and Braxton just eggs it all on and then cries when he gets hurt.  I finally let them out of their rooms and we talked and I told them that either they have to be better at not fighting and being mean to me or I have to put dad in a home I can't be the mom and the dad and the caregiver and take care of everything that he needs, I know he needs a lot more attention than they do, and I know I don't have enough energy to do it all but I am trying my best.  They have not fought at all YET today I think maybe I finally made it stick in their heads that I am trying my best and I can't do it all and they need to help out by not fighting.  I had to make sure and thank them for helping me as much as they can with Jaren, and I am so thankful for what they do.  But the fighting has to stop.  I know siblings fight and I know that sometimes it will escalate but 24/7 fighting is way to much. 

doctors, tests, and more

We finally had the Endoscopy test today with the GI doctor, it was so fast I thought we would be there forever but we weren't.  The Dr said that Jaren has a hiatal hernia but no ulcers so that is good.  He said the hernia is not something to worry about as of yet.  He said that they did put something in the esophagus to stretch it out a little bit and they did take some biopsy's so they don't have to put him through this again.  The Dr seems very knowledgeable and so I trust what he is doing, I know he has to rule out everything before we make a decision about a feeding tube to make sure that the tube will be our best option.  He said if the stretching does not work and we should know if it is going to work or not, right away if it works great, if not we have to go back in for a swallow study with a speech pathologist.  This roller coaster ride of emotions is not fun.

Saturday night he choked really bad and couldn't even eat dinner.  He has lost some weight in the last week so it is a little concerning.  He woke up on Monday throwing up so the first thing I did was check his sugars and they were not to high, so I knew it wasn't DKA again.  I called the family Dr and he was out sick so I talked to the nurse and told him what was going on with him and he asked me what my thoughts were because I am the caregiver and I know him the best! It made me feel like they cared what I thought.  I told him that I was worried because of the choking the other night and the last time he was hospitalized for pneumonia he was throwing up.  He told me to bring him in on Tuesday when the Dr was back in.  I took him in yesterday and he looked much better but I wanted to make sure.  His lungs were clear, and he gave us a prescription for phenergan suppositories to stop the vomiting when it occurs.  I was talking with the nurse and was telling him that I had high blood pressure last time I went in and he wouldn't let me leave until I had it checked again, and it was really high so he walked me right down to the receptionist and made an appointment for me for Wednesday, I really am thankful for the people that care about me and take care of me.  I am so busy taking care of Jaren that I don't always catch symptoms for my health.  I can see why caregivers are often very ill.

very emotional

The girls went to Brighton camp this week so it was just Jaren and I and Braxton home.  We did a lot of fun things together but we missed the girls like crazy.  They went the whole entire week and didn't call me once, Ashlyn said that she only cried once or twice which is really good for her. 

Thursday night Jaren wanted to sleep downstairs with me so I helped him down the stairs and it was hard to get to sleep because I am not used to him being right next to me.  My brain started turning and I started crying he actually put his arm around me and I realized how much I miss that and how lonely I am even when he is right next to me.  I miss his kisses, and I miss cuddling with him.  Friday has been a really weird day it seems that last night it was all a dream.  I hate MLD and I hate that it has taken away my best friend and I hate that he is not the same person I married.  I try really hard to stay positive most of the time about all this crap but I feel like sometimes it is ok to break down and feel sorry for myself once in a while.

Now to something more positive, we were able to go and meet up with a family from Arizona that is also living with loved ones with MLD and it was really fun to meet them and to talk with someone else.  They have the most beautiful kids and they are so fun to be with and to talk to.  They are a very positive family and they are amazing to me.  I am so thankful for the many friends a families that we have been able to come in contact with because of MLD but I still dislike the disease very badly. 

I have the opportunity to teach relief society this coming Sunday and I am a little nervous I have never taught and adult class before I am used to teaching children so it should be interesting.  I guess I have something to learn from the lesson, it is about Charity and helping others out is what I am getting from what I have read a million times.  I hope that people will get something from the lesson and that I can teach with love and not offend people.  Maybe I am not the person to teach this lesson!

No Electronics Day / Girls Camp

A couple of weeks ago I was so sick of the T.V. and the Nintendo being on 24/7 and all of the fighting, I decided that we were going to have a no electronic day.  It was the best decision ever I made sure Jaren went to the center that day so that he wouldn't whine about not being able to play his DS and the kids wouldn't yell at him for trying to play it over and over.  We got so much done that day and there were little fights but ones that didn't get out of control and there were no tears!! I am going to try and do that more but I have to make sure that it is a day that Jaren won't be home. 




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swallowing

Last weekend Jaren couldn't swallow any of his pills so he didn't have any pills for a couple of days, I tried opening the capsule and putting it in applesauce without him knowing, I tried putting them in milk, chocolate milk, pudding, nothing was working so I finally went to Walgreens and got some spray stuff called pill glide and sprayed it and he got most of them down.  With it being on a weekend I couldn't call a gastroenterologist  because he is not an established patient, I did call the family doctor and they told me to take him to the ER but I really didn't want to sit there forever, I decided since he was able to swallow most of them with that spray that we could wait until Monday.  I called first thing Monday morning to a GI doctor and they didn't have any openings until July 29th, yes that says July.  I took the appointment and asked them to put him on a cancellation list and they called on Wednesday and they had an opening on Thursday so I took the appointment and I am so glad we chose the one that we chose, he was so kind and so honest and he told us right from the beginning that he had never heard of MLD and he will have to research it to know what to do.  He did order an endoscopy and they have to put him under anesthesia for the procedure so I hope he does well.  He said if that all comes back normal they will then do another swallow study and then go from there.  I asked him about a G tube just for meds and he said they want that to be the last resort but that if he is aspirating with food and things that we will keep that in mind.  I told him that I know eventually he will probably have to have one and I don't want to be stuck not able to get into a doctor for a month and a half he told me that now that he is a patient it should be easy to get into them.  

Braxton had Cub Country this past weekend and Friday he came home with a sore throat and as the night went on he started getting a fever, I took him in just in case it was strep and he had to have 2 strep cultures and they both came back negative I still haven't heard if they have come back from the lab yet for the longer culture. He was very upset that he didn't get to go to Cub Country on Saturday but he laid in bed all day Saturday and half the day Sunday he is finally feeling normal.   I was up all night with him Friday night and then Saturday night Jaren was up all night because he couldn't feel his feet at all and then he started crying because they hurt so bad. I don't know what to do for the pain.  

I guess I wasn't done with sickness

I thought we would get over everything, boy was I wrong.  RaKelle finally got better and then Ashlyn came down with croup, and Braxton got strep, and that same day RaKelle came home from school with the stomach flu and missed the last 2 days of school, I got a little bit of the stomach flu but it only lasted 1 day, thank goodness.  I am so thankful that Jaren has not been sick.  I had a horrible cold but I am much better.  I thought maybe we were in the clear and then Braxton woke up with Pink Eye.  Now hopefully we will be done and enjoy our summer.

I have enjoyed being home so far this summer, I was not allowed any hours this summer and I was praying that I would get to work at the school again in the fall.  I got a call on Monday asking if I would be willing to come back and work as a k-3 classroom aid! yeah I can't tell you what a relief that is for me to know that I will have a job again when school starts.

RaKelle is still really struggling with life but she is able to tell me when she needs to talk and she is very open with me and their new counselor is really good and they like him except for, Braxton is having a hard time with the change but I think when they build up their trust he will be fine with him.

We were able to go to the Sweets candy factory for a free tour and it was so much fun and it was really cool to see how they make the delicious candy that we eat! Jaren loved it and he didn't complain one time which is different for him, he usually complains about everything.  They gave samples of a lot of different candies and they were all so nice.  I hope that we can do some more tours this summer, at different places.  We have kept ourselves very busy so far we haven't had a chance to even sit down and relax, but it is fun.  I am trying to get my house completely clean and go through everything but spending time with the kids is a lot more fun so we do a little bit each day before we go do other things so it will get there but who knows when.

The aide coming in 3 days a week for about an hour for now is wonderful, I have really enjoyed getting to know her and she is really fun.  She is good with Jaren and if he doesn't want to shower and things she says ok we will just sit and talk or play nintendo and then she comes back 2 days later and he gets in and she helps him shave and he is doing so much better now that he is clean most of the week, he won't always change his clothes but that's ok, that is not a fight I choose to have so I just let him wear whatever he wants.  He still enjoys going to the center and now that it is summer I get to spend the entire day with just the kids and we don't have to worry about Jaren staying home alone, or having to come home and check on him.

Hopefully now I can say that we are done with illness for awhile and we can enjoy the rest of our summer!!

I am done with sickness

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.

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!!

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.

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. 

new year challenges

The new year is here and it is going so fast.  I feel like I can't keep up with everything.  My birthday was on the 14th and they took me to dinner and then we didn't do anything else it was really, really nice, lately I haven't wanted to do anything I just want to stay home and do nothing.  That never happens so when I get the chance to do nothing I enjoy it.

I was supposed to have a meeting through the Alzheimer's Association with my stake president and all the bishops and their counselors to raise awareness about memory impaired and to hopefully start a support group in my community.  I had prepared for it for a few months and I was ready, they called and changed it on me.  It was a little frustrating because I had to prepare mentally, physically, and emotionally, and I had my kids write things down about what it is like to live with their dad who has memory problems and acts like a child.  It was very hard to read them and it opened my eyes a little bit to the fact that they are seeing the decline in his personality and other things like that. I don't know if you can read them but I thought it makes it more real when it is in their handwriting.  Hopefully when I do have the meeting it will open many eyes to the fact that it affects the entire family.  I tried to make them as readable as possible.

RaKelle's letter she is 13

Ashlyn's letter she is 11

Braxton's letter he is 8

It is affecting my kids at school, RaKelle is not doing very well her grades are suffering bad, Ashlyn just keeps worrying about everything, someone gets a stomach ache and she cries because she gets worried and clings to me like no other.  I finally had to take Braxton in to the doctor for anxiety because he doesn't want to go to school, he doesn't want to go to any friends house, he doesn't even want to go anywhere with me but he also doesn't want me to go anywhere either it is getting frustrating.  I hope that the medicine they put him on will work because I don't know if I can take the stomach aches and the crying much longer.  

All Jaren wants to do lately is sleep the other day I came home from work and he was in bed and said he had been there all day, and then he wanted to sleep more.  He is so confused about things it gets irritating.  He can't remember how to play all the games that he plays and then he loses everything, when I come home from work he has the tv on with a Wii game and the DS by him and he tries to play all of them at once but they are not even close to the same game so he gets frustrated.  I am so thankful for the opportunity I had of taking care of him but it is starting to take its toll on me.  I am so thankful for the things I have learned from being a caregiver and I am thankful for the great kids I have and that they are turning out to be sympathetic and loving to people. I am thankful for the great people that have helped me through these trials.

I don't want to sound greedy but I want a "normal" life, I want to have a "normal" marriage I want to be able to talk to my spouse like I used to, I want to be able to tell him something and not have him ask so many questions and then forget everything that we just talked about.  I want to be able to have my spouse sleep in the same room with me, I want to be able to hand over the kids grades and have someone else take care of it, and someone to help me discipline the kids when they are not behaving.  I want to be able to sit with my whole family at church, and not be treated different because my husband is not like other priesthood holders and he can't do things that most of them can.  I want to be able to go to work and not have to worry that the kids are stressed out at school not being able to concentrate at school, and I want a spouse that can work and that when we come home from work we can talk about what happened and things like that.