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.

Christmas

Christmas is over and now the new year will begin.  I can't complain about how 2012 was there were a few bumps and some mountains but we were able to climb them and continue to move on.  I have to admit though I am so tired and worn out, hopefully the mountains won't be as high to climb in 2013 but I have a feeling they might be a little bigger than 2012.  As the MLD progresses it gets harder and harder to take care of him especially if he keeps getting pnuemonia and he doesn't get any symptoms.  I took him to the Diabetic Doctor today and his A1C was 8.3 which is really, really, good for him.  I thought for sure it would have been high because of the hospital visit for DKA at the end of November, and the holidays.  The doctor was even amazed at how good it was.  If I could just get him to leave his blood sugar machine where I know where it is it would be nice, he can't seem to keep track of it and it drives me crazy. 

I also went in for a physical yesterday, I go every year it wouldn't be fair for my kids to lose both parents so I try my hardest to keep myself as healthy as possible, I did find out some problems I have though and if I take it serious and do my best I should be able to be better.  I knew the stress would of being a caregiver would catch up to me sometime.  I just have to remember to take care of myself even if it's just an ice cream with a friend or a brisk walk around the block or something to get my mind on other things beside Jaren's care.

I am so sick of cleaning up puke the stomach flu hit us this year and it has NOT been any fun.  luckily it skipped over me but the rest of them got it and of course they all got it seperately so I cleaned up puke for a week straight.  We haven't had the stomach bug for at least 4 years so the kids were not really sure what to do when they felt like throwing up.  I have never done so much laundry in the middle of the night than I did that week.  Thank goodness it was gone by Christmas, and I hope it doesn't come back. 

This new year is going to be really hard the amazing person that lives by us that takes Jaren to the Temple is going on a mission to Germany and they are the best people in the whole world, I will miss them like crazy.  Sister Buchanan was the relief society president and she will be missed by all but I don't know what I am going to do with our her, she will probably never know how much she has done for me and my family, and her husband is one of the best people as well, without fail he would come and check on Jaren every week.  They have the most amazing children I had the opportunity of getting to know their daughter before she moved to Hungary with her family and she was also amazing, she helped me in so many ways I can't even tell you.  She would come to my house and visit with me and fold laundry, or clean my kitchen.  I love this family and will be very sad when they leave, thank goodness for technology so I can keep in touch with them through the computer.  Hopefully the next few years will go by quickly and Jaren will still be here when they come home.  Jaren has grown to really, really like Bro Buchanan and he is sad that he is leaving, I don't know if he really understands that he won't be able to see him every week like he has been.  I guess we will find out when I go back to work and he doesn't come to visit with Jaren during the week.

It has been awhile

I haven't been able to keep up with the blog lately our computer stopped working and so we haven't had a computer for about 3 months.  We finally got a different one and so I have a lot to catch up on.  It is very hard to not have a computer when everything they do now days is on the computer, the kids have homework on the computer, I had to tell their teachers to please be patient with them and to send paper copies home with them because we didn't have a computer. 

School has been in for awhile and the kids are doing really well.  We had a fun halloween and then Thanksgiving came and that was NOT a good week at our house.  The Sunday before Thanksgiving Ashlyn had the stomach flu, then Braxton came home from school on Tuesday and said that his head hurt and he had a fever that is what happens when he gets strep throat so I took him into Kidscare and the rapid strep came back negative, there isn't really much they could do with a negative test, Wednesday he still wasn't feeling the best but his fever had broke and he was not complaining of a headache like he was on Tuesday.  Thursday while we were getting ready to go to Thanksgiving dinner with my family the doctor from Kidscare called and said that the culture came back positive, so he had to start on an antibiotic and couldn't go to Thanksgiving dinner, he was crushed.  He got to eat a happy meal from McDonalds for his Thanksgiving, and he got to rent a WII game from redbox.  We were on the mend and then Jaren woke up Sunday morning throwing up and couldn't stop.  I text our home teacher and he came over and 2 neighbors came and helped give him a blessing, usually I can get it under control with insulin and powerade zero, but he couldn't even get out of the bathroom without puking.  I decided it was time to take him to the ER and at least get fluids in him.  His sugars were at 395 when I got him to the ER so they had come down a lot.  He was so dehydrated it took the tech about an hour to get his IV in.  The doctor came in and talked to us about his symptoms I told the dr it was probably DKA (diabetic ketoacidosis) and he agreed.  But I also told him that a few months ago I couldn't get his sugars below 400 so I took him to the doctor and there was fluid in his lungs, he had pnuemonia and I had no idea thank goodness for the knowledge I have that when blood sugars are high it means there is an infection somewhere.   He did a round of antibiotics and he felt much better.  So the doctor at the ER listened to his lungs and he couldn't hear any fluid but he felt it would be best to do a chest x-ray thank goodness he did he had fluid in his lungs AGAIN.  They decided to admit him but they couldn't decide whether to admit him to ICU or to a regular floor, they did more blood work and said that they had been able to get the DKA under enough control that they could admit him to a regular floor, the admitting doctor on the regular floor did somemore testing with urine, he said that the x-ray showed pnuemonia but they could do some different tests to see what strain it was.  The Urine culture came back on Monday with the diagnosis of Legionella Disease which is caused through water sources, We can't figure out where he got it from but he was so dealthy ill it was scary.  I have never seen him so ill and unresponsive as he was that morning it was horrible.

So now we are picking up the pieces of our not so good week and I took them into see my counselor with me because I was having a hard time dealing with everything and when Jaren didn't come home from the hospital until Tuesday they kept saying how weird it was to not have dad home, I knew it was going to be a tough week.  When we were talking with my counselor RaKelle mentioned to him that our bunny died a couple weeks before this all happened and she said "it hurt so bad when her bunny died, she can't imagine how much it will hurt when her dad dies" as a parent what do you say to that I am just glad I was not alone when she talked about it.  I made her an appointment to meet with her counselor this week so hopefully she can talk about things and know that it is okay to hurt when something like that happens.  I try my hardest to keep my kids level headed about things and to know that any time they need to talk they can come to me but sometimes it is awkward to talk to mom about things especiallly dad dying.  They are doing a little better now, we are trying to get used to our "new" normal, I don't think Jaren will ever get back to 100% he is going to be tired and weak and not have any energy, it is getting harder for him to walk, he was already getting worn out very easy but this pnuemonia totally wiped him out and I don't think he will get the strength back even the little bit that he had.  I guess we will see. 

I wouldn't feel good if I didn't thank the amazing people who stepped up and helped me out so much.  neighbors who brought dinner in neighbors that came in and cleaned my kitchen and bathroom.  My amazing co-workers who brought dinner in for a week so I didn't have to worry about cooking and the many thoughts and prayers received from so many.  My awesome family who helped with the kids and my sister who brought them up to the hospital and listened to me when I had medical questions.  I am so grateful to have such amazing people in my life that care so much to help out. 

I can't believe summer is almost gone

I can't believe summer is almost gone, school starts in a week it came and went so fast.  I have been so busy keeping up with everything that I haven't been able to update for a long time.  We have had a lot going on this summer, we met with a new Neurologist at the University of Utah and he specializes in cognitive development he was really really good and we liked him a lot.  He told us that with MLD it is attacking the frontal lobe of the brain and so he said that the MLD is causing what they call Frontaltemporal Dementia and gave me some numbers to call so that I can get some more help with Jaren and his care.  He goes in on Friday for a Neuropsych evaluation and that will give us a baseline to where he is right now, and we can watch the progression a little better.  It is a 4 hour test and he is going to be so overwhelmed and exhausted I don't know how he is going to handle it.  He also set us up with a Social Worker that knows of some things in the community that could potentially help me, but I haven't had a lot of time to call any of them.  We met with a health educator that told us about a bank that we can store his DNA in so when our kids are old enought to find a spouse they can have some of the DNA withdrawn from the bank and find out what the gene is so that their spouse can be tested so their children won't be affected.  We don't know yet what gene it is because we haven't been able to get that testing done yet, we have not had cooperation with that part of the testing. 

I can't believe school is starting again already.  RaKelle will be in 8th grade.  Ashlyn will be in 6th grade and Braxton in 3rd.  They are excited to start school.  This is the first year I am actually ready for them to go back to school they have been fighting non stop every day I am so tired of it. 

RaKelle turned 13 in June and she is definantly a teenager she woke up one day with the attitude and I am not really sure how to handle her she has been such a great kid and she still is she is just testing me.  For her birthday I surprised her with tickets to the Osmond Brothers Concert, we went to dinner and then to the concert it was so fun and to see her face was so amazing.  She loved it the whole time.  I have to explain why I got the tickets because they are an older group, when I was pregnant with her she wasn't moving at all one day and I was getting worried I was getting ready to call the dr when Donny and Marie talk show came on and Donny sang on the show, she went NUTS she didn't stop moving until the song was over, it was cool, when she was a baby if I couldn't get her to stop crying I would just turn a song on from Donny and she would quiet down.  As she got older she knew when he was singing on the radio, she had an imaginary friend named Donny and she had a doll named Donny she still has that doll to this day.  He wasn't at the concert but she still loved it.  She always told me she was going to marry him.  It was so fun to spend that time with her and to see her face when they were singing.  The 2nd generation Osmonds were also there and this is the first time they have all been on stage together since 1996 so it was really cool to see.  She has been so busy with different girls camps this summer and she just spent a week in Washington with my parents and her cousins and aunt and uncle, she will be home tonight and I can't wait to see her I miss her so much. 

I am sure I am missing a whole ton of stuff for updates but I don't want to bore everyone.  Hopefully as soon as we get back into the swing of things with school and be on a normal schedule I will be able to keep up with the updates.

10 things I never thought I would say to my spouse

I have been thinking a lot about how my life is not that "normal" and I have to laugh at some of the things that I say to Jaren.  I never thought I would say some of the things that I say to my husband or about my husband. 
1. go to time out for fighting with your kids.
2. you can't say things like that in public, you will get hit.
3. go play nintendo before I hurt you.
4. I am watching my friends husband tomorrow, he has the same type of thing as Jaren.  If you don't behave you will be grounded.  
5. come here so I can help you put your pants on correctly
6. let me help brush your hair
7. go to bed or you will be grounded tomorrow.
8. please go on a walk but don't get lost. 
9. no I don't need any help go watch a movie or play nintendo
10. please go to sleep so that I can go to bed and sleep for some of the night.

I guess I just have to laugh at this, these things you say to your children most of the time but I never in a million years thought that I would have to treat my husband like a child and put him in time out and tell him to stop fighting with his kids.  Most of the time he doesn't know what he did to get in trouble he just knows that when I am mad he better go to his room and think and then he has to apologize even though he has no clue what he did.

Yesterday was really scary for us, we woke up late and his blood sugar goes low in the morning so I knew he would be low but when I got to him he was so zoned out and then he started to have a seizure, luckily I caught it in time and gave him some food before the seizure got worse and he got to a point where he wouldn't eat anything.  He was so out of it yesterday he slept pretty much all day. 

Sometimes I feel like I can't keep everything together.  Our Wii broke a couple of weeks ago and I can not tell you how much I have wished for another one.  He doesn't stop, we will be watching TV together and he has something to say about EVERYTHING that is going on.  He just follows me everywhere and he keeps asking why the Wii doesn't work and when can we get it fixed.  I didn't realize how nice the Wii was for keeping him entertained and occupied so that I could get things done without him always down my back for everything that needs to be done or when it is done he finds everything wrong with it.  I thought I was going crazy with him playing 24/7 but really it was a help.  I feel like he is progressing so much that he might even forget how to play by the time we get a new one. 

School is out now and I am hoping that things will transition smoothly.  I know it is hard for Jaren to have his schedule interrupted but I can't help it.  I am sure he will throw some tantrums and get sent to his room for time out but we all live here and he needs to cooperate with all of us as well.  I will have a meeting with the kids and explain to them that when they are home he isn't use to it and that he is used to doing his own thing so they need to be patient while we all adjust to the new schedule.  He will still go to the daycare on Tuesdays with his friend and my friend and I and the kids will get to do some fun things together without any whining or tantrums from the dads. 

Mother's Day

Happy Mother's Day to all those Mom's out there.  I hope you all had a very good day filled with family, and fun.  I have to admit though that I really struggled with Mother's Day this year, I usually love it because it's a day that I don't have to do anything.  This year was a lot different, Jaren has gone down so fast this last year I have to do a lot more for him now so I had to take his sugars give him insulin and stuff like that.  Holidays are hard anyway but for some reason this one was really hard.  My mom and dad took the kids shopping and they got me a crock-pot and I loved it, I use my crock-pot at least once a week and the one I have now the handle on the lid broke off but I still used it, but the new one is really really nice.  I am so thankful that they could do that for me, of course they made things at school, and scouts, and stuff which is always nice too.  I think mother's day was just another dose of reality of things to come and the fact that I probably won't get a break.  I have a hard time with the fact that he can't take the kids shopping and he can't make breakfast, and he can't do the things that other dads can do.  Church is also hard on Mother's Day because a lot of dads take over on that day so that their wives can have a break at least at church.  I know there are some out there that are single or that go to church alone, but I do have a spouse he just can't do a whole lot and he doesn't come to church with us because it is too overwhelming. 

We had an appointment with his Neurologist at the University of Utah, we went back up there because some things happened at the other office and we felt it was better for us to go back to the U.  I am so thankful we did she was so nice and she was so thorough with the exam, we were up there for 3 hours, so I know she was behind but she still took the time with us and answered my MANY questions and I didn't feel like we were just another patient and she had to move on.  We did find out however that she is moving out of state at the end of May, but she referred us to another doctor at the U that specializes in memory function and Dementia type diseases so I am excited to learn about why he does some of the things he does and what we can expect when he does some of those things, this new doctor might be able to give us a little bit more info for a time line, it gets so frustrating when I don't know what to expect and why he is doing weird things. 

We have an amazing guy in our ward and he has asked Jaren to work with him in the LDS temple on Saturday nights with him  in the Baptistry so he has been with him a few times and he really likes it I think it is good for him to get out of his normal routine sometimes, and a plus for me that I get to spend some time with just the kids without Jaren so we can start up some traditions that we can carry on after he passes. 

2 birthdays, Easter, Baptism, and Anniversary

It has been a busy couple of weeks, we have had 2 birthdays, Easter, a Baptism and we are celebrating our Wedding Anniversary today.  Ashlyn turned 11 and Braxton turned 8 on Easter Sunday, Braxton was Baptized on April 14th and it was so awesome.  He was so excited and Jaren was actually able to baptize him, my dad was able to get into the font with him to help him remember how to do it, and the bishop stood right next to him during the confirmation and whispered it in his ear.  We are so blessed that he was well enough that day to perform this special ordinance.  It truly is a miracle.  Sunday while I was at church he decided he needed to change the tubing on his insulin pump and did NOT put another one on so he had gone most of the day without insulin and I thought we were going to have to take him to the ER to get fluids but I was able to get it back in control so we didn't have to go in.  Thanks to Cody Pearson and my dad for dropping everything and coming over to give him a blessing if not to comfort him but to comfort the kids knowing that he would be ok without having to go to the hospital.

Today is our 14th wedding anniversary, I made the mistake of asking Jaren if he knew what an anniversary was and he said "yes" " it is the day we got together"  I said "yes, kind of" I then asked him what marriage meant and he didn't say anything he got silent and I told him that it was ok if he didn't know I just want to know if he knew what it was and he got really sad and said "no, I am sorry"  I acted like it was no big deal but it was a shock and it really did hurt.  The more I thought about it the more it hurt it makes me wonder what he thinks I am to him I guess just a caregiver and someone that he can lean on for help with his problems.  I am trying my hardest to not dwell on it but I can't stop thinking about it.  I didn't get married to be a caregiver for the entire marriage.  No I wouldn't change anything I would have still married him but the more he progresses the harder it is to think that I am actually married.  I love him still but it is a very, very different love.  I am very grateful that he has made it to our 14th wedding anniversary but I am getting so tired and worn out being a caregiver is the hardest job EVER!!!  I think we should make a reality TV show with celebrity's and trade places with them for ONE day and the caregivers could live a day in luxury and the celebrity's would have to take care of our loved ones for one day but I don't think the stars could handle it at all, they wouldn't know what to do without nanny's and cooks and someone to make them look pretty and not have time to work out or barely even get a shower in and work to keep food on the table. 

RaKelle is really struggling with life right now and I don't know what to do about it besides let her know I am here to talk and listen and a shoulder to cry on.  Being her age I know is so difficult it is a very hard age without all the trials that she has and I think she is handling it as good as can be expected, but as a parent it is hard to see how hard life is on her.