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.
Friday, December 28, 2012
Sunday, December 9, 2012
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.
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.
Sunday, August 19, 2012
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.
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.
Sunday, June 3, 2012
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.
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.
Tuesday, May 15, 2012
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.
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.
Monday, April 16, 2012
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.
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.
Saturday, March 24, 2012
Busy, busy, busy
I have been extremely busy the last couple weeks so I am a little behind. I got my car fixed and registered that is a huge weight off my shoulders. We got Jaren's pump in the mail but we can't get into to see the nurse to help train us on the pump for a month so we can't start using it until then. We have 2 birthdays, Easter, and a baptism with in 2 weeks of each other I am starting to get a little worried about getting everything done. I can't believe my baby will be 8 yrs old on Easter Sunday. He is not supposed to be getting baptized until May but we are going to be doing it earlier so that Jaren will be able to baptize him even if someone has to get in the font with him, the bishop and I decided that if we wait until May and Jaren can't do it we don't want to kick ourselves for not doing sooner so that Jaren could baptize and confirm his only son and the last of our children.
The last two weeks have been so frustrating also when my car didn't pass that was just the beginning. I thought maybe the car would be the trial for that week but of course when it rains it poors. RaKelle had a major meltdown and asked me to help her get some medication that would help her be happy again and not so down all the time, I wanted to cry for her. Then we had an appt with the neurologist and it went ok, nothing has changed and we didn't get to see the doctor for very long so I wasn't able to ask my many questions. We then went from the dr to Parent Teacher and Ashlyn is lying about injuries at school, and she is lying to me about what happens at school and then she gets frustrated when nobody believes her, by the night I was so worn out I couldn't keep up with everything I wanted to just scream and go to bed, but RaKelle had young womens and Ashlyn had activity days so I dropped them both off and was able to sit down for an hour and when I went to pick up Ashlyn someone there pulled me aside and told me how when he has been checking on Jaren for me that my house needs some work and continued to tell me everything that was wrong with my house, I just looked at him and tried not to just start bawling I was so embarrassed and upset that he would even say anything to me like that and he just kept going, I finally said come on Ashlyn we are leaving, I left the house and cried my eyes out I know my house is not perfect and I know I need to do better, BUT I have no time as it is I can barely get dinner on the table and the dishes done, the kids have chores but how can I make them follow through when I am never home? needless to say I asked the bishop not to send ANYONE over anymore to check on Jaren, it is easier for me to call and check on him then to be at work and worry about what people think of my house. Maybe he should walk in my shoes for an hour and then maybe he would realize why I don't have an emaculate house. We got the house really clean thanks to the volunteers that come over so willingly to help us. I have been able to actually keep up on it so far with the help of the kids and Jaren has even been doing his chores. Then Braxton woke up a week ago with Strep throat nobody else has gotten it yet so hopefully they won't.
I am so ready for spring. The weather has been so nice that the kids have been playing outside a lot and it has been nice. I also broke down and bought me a Kindle because I sit at the doctors office so much and I have read all of the magazines and they all have the same kind of magazines and I hate taking big thick books with me because I leave them there and then I have to go back and get them, this way I can stick it in my purse and read books I am so excited I love it already I have even used it and this week we have appts as well so I will get to use it a lot.
The last two weeks have been so frustrating also when my car didn't pass that was just the beginning. I thought maybe the car would be the trial for that week but of course when it rains it poors. RaKelle had a major meltdown and asked me to help her get some medication that would help her be happy again and not so down all the time, I wanted to cry for her. Then we had an appt with the neurologist and it went ok, nothing has changed and we didn't get to see the doctor for very long so I wasn't able to ask my many questions. We then went from the dr to Parent Teacher and Ashlyn is lying about injuries at school, and she is lying to me about what happens at school and then she gets frustrated when nobody believes her, by the night I was so worn out I couldn't keep up with everything I wanted to just scream and go to bed, but RaKelle had young womens and Ashlyn had activity days so I dropped them both off and was able to sit down for an hour and when I went to pick up Ashlyn someone there pulled me aside and told me how when he has been checking on Jaren for me that my house needs some work and continued to tell me everything that was wrong with my house, I just looked at him and tried not to just start bawling I was so embarrassed and upset that he would even say anything to me like that and he just kept going, I finally said come on Ashlyn we are leaving, I left the house and cried my eyes out I know my house is not perfect and I know I need to do better, BUT I have no time as it is I can barely get dinner on the table and the dishes done, the kids have chores but how can I make them follow through when I am never home? needless to say I asked the bishop not to send ANYONE over anymore to check on Jaren, it is easier for me to call and check on him then to be at work and worry about what people think of my house. Maybe he should walk in my shoes for an hour and then maybe he would realize why I don't have an emaculate house. We got the house really clean thanks to the volunteers that come over so willingly to help us. I have been able to actually keep up on it so far with the help of the kids and Jaren has even been doing his chores. Then Braxton woke up a week ago with Strep throat nobody else has gotten it yet so hopefully they won't.
I am so ready for spring. The weather has been so nice that the kids have been playing outside a lot and it has been nice. I also broke down and bought me a Kindle because I sit at the doctors office so much and I have read all of the magazines and they all have the same kind of magazines and I hate taking big thick books with me because I leave them there and then I have to go back and get them, this way I can stick it in my purse and read books I am so excited I love it already I have even used it and this week we have appts as well so I will get to use it a lot.
Saturday, March 3, 2012
Enough is ENOUGH
I am so tired and worn out I have been sick for 3 weeks now it is getting old. I started with the stomach flu and then the next week I had croup, yes croup I hardly ever get sick and I end up with croup how does that happen? my kids didn't even have it, nobody else got it or even a cold. I must be so stressed out that I can't fight off sickness. I have been having horrible nightmares that are so bad I wake up drenched with sweat and screaming. I went to the Dr again today because I thought I had an ear infection, I stopped on my way home to get my car inspected and emissions so that it is legal again and it failed Safey inspection, I think the guys at the place thought I was a fruitcake because when they told me it failed and why I started crying. I just kept thinking one more freaking thing I have to take care of and handle and find a way to get it done so I can get it re-inspected within 14 days.
We were able to get his wheelchair and it is a very nice one and he likes it a lot. I think we finally got the insurance worked out finally for the pump and they also were able to qualify him for a continuous blood glucose monitor which will keep track of sugars 24/7 I know it isn't perfect because the readings can be off but it will make my caregiving life a little bit easier especially while I am at work.
I went with a friend last night to see The Vow and it was so close to home I cried the whole movie, my eyes burned all night because of it, one part on the movie I was sobbing and tears were streaming down my face. I got a little jealous though because they got a 2nd chance at their life together and I know that I will not have that chance. It was a good movie and I liked it. We put our kids and our husbands in the movie the Lorax and went to our movie ALONE and it was so nice and relaxing even though I cried the whole time. I totally understood Leo and how frustrating it was for him to remember their happy lives together and that she remembered nothing about it, she didn't even remembering being married. I also got a glimpse at how frustrating it is for Jaren to not remember things and how they get so agitated and ornery because they don't remember and people expect them to remember everything it was eye opening.
We were able to get his wheelchair and it is a very nice one and he likes it a lot. I think we finally got the insurance worked out finally for the pump and they also were able to qualify him for a continuous blood glucose monitor which will keep track of sugars 24/7 I know it isn't perfect because the readings can be off but it will make my caregiving life a little bit easier especially while I am at work.
I went with a friend last night to see The Vow and it was so close to home I cried the whole movie, my eyes burned all night because of it, one part on the movie I was sobbing and tears were streaming down my face. I got a little jealous though because they got a 2nd chance at their life together and I know that I will not have that chance. It was a good movie and I liked it. We put our kids and our husbands in the movie the Lorax and went to our movie ALONE and it was so nice and relaxing even though I cried the whole time. I totally understood Leo and how frustrating it was for him to remember their happy lives together and that she remembered nothing about it, she didn't even remembering being married. I also got a glimpse at how frustrating it is for Jaren to not remember things and how they get so agitated and ornery because they don't remember and people expect them to remember everything it was eye opening.
Saturday, February 18, 2012
Valentines Day
Valentines came so fast this year. Our church has a sweethearts ball every year for valentines day and Jaren and I went to on our very first date 15 years ago, and we have gone every year for 15 years. I asked him last Saturday if he wanted to go with me this year and he said NO it kind of hit me a little hard he always wants to go, I realize he can't dance a whole lot but I thought he would at least want to go for old time sake. I decided to take him anyway so our friends came and went with us so her and I did line dancing and visiting and the guys just sat in their chair and watched us. After we got home we took the kids all out for ice cream it was really good. I am so thankful for our friends that like to hang out with us and that they have similar issues that we have so they actually get it. On valentines day our friends parents were nice enough to take us all out to the movie and to dinner it was so much fun.
I have been so busy these last couple of weeks I can hardly remember from one day to the next so it was nice to sit down and enjoy a movie and dinner and good company. I have had the flu this week and now I am fighting a cold why do they all have to hit at the same time? I even had to call in sick to work this week and I never do that. I have been really good this winter about not getting sick but I guess I have a lot of stress lately and it kind of hits hard and fast when I am stressed and can't fight it that good. Some things that have happened lately have been good and bad, the insurance approved a wheelchair for Jaren so that is a relief, I am still working on getting a new insulin pump there have been some bumps in the way for that so hopefully it will work out. He also got fitted for a new pair of shoes that are made specially for him with special made inserts to help with the neuropothy in his feet and legs.
The last time I took Jaren with me to visit with my counselor so that he could meet Jaren and get an idea of what I deal with on a daily basis so when I met with him again he told me that he could see why he puts up a good front that nothing is wrong and that when he started asking questions and things he could tell that something in him is not right, it was so nice to be validated with knowing that I am not crazy and he does have problems, I know he isn't the same person I fell in love with 15 yrs ago but nobody can really tell that he is not the same because they don't know him the way I do. It is a very hard job to be a caregiver 24/7 and being pulled in so many different directions with kids, and homework, and work, and dr appts, and housework, and trying to do things for myself so that I don't run out of energy to deal with day to day problems. I am so frustrated with so many different feelings that I am experiencing with the progression of this disease I feel so anxious a lot of the time and sometimes I don't know why or what to do about it, I have a hard time attending church because I don't feel comfortable at church all the time. It is getting harder and harder to leave him at all, he forgot how to write his name the other day and he has also been getting up and turning the nintendo off right in the middle of him playing it, that is so not like him he would play nintendo all day if I would let him and to be honest sometimes it is not worth the fight so I let him play because I can't stand the tantrums. The whole sweethearts ball thing made me realize that we are at a point where he is not able to do a lot of things that we use to enjoy doing, I hope the wheelchair will give him some energy to at least go places together as a family and that he won't get so worn out.
I have a feeling we don't have a lot of time together and I want to make the most of it, but I can't do that if I have so many energy leaks that I can't keep up with everything I don't want to put him in a home but I also have a family to take care of and children to keep healthy and sane. I hope that he can stay with us until his time on earth is done my goal is to make whatever sacrifice I have to, to keep him alive well to the best of my ability and that he will enjoy his last days here at home with us and laughing as a family and enjoying each other without the stress of daily living.
I have been so busy these last couple of weeks I can hardly remember from one day to the next so it was nice to sit down and enjoy a movie and dinner and good company. I have had the flu this week and now I am fighting a cold why do they all have to hit at the same time? I even had to call in sick to work this week and I never do that. I have been really good this winter about not getting sick but I guess I have a lot of stress lately and it kind of hits hard and fast when I am stressed and can't fight it that good. Some things that have happened lately have been good and bad, the insurance approved a wheelchair for Jaren so that is a relief, I am still working on getting a new insulin pump there have been some bumps in the way for that so hopefully it will work out. He also got fitted for a new pair of shoes that are made specially for him with special made inserts to help with the neuropothy in his feet and legs.
The last time I took Jaren with me to visit with my counselor so that he could meet Jaren and get an idea of what I deal with on a daily basis so when I met with him again he told me that he could see why he puts up a good front that nothing is wrong and that when he started asking questions and things he could tell that something in him is not right, it was so nice to be validated with knowing that I am not crazy and he does have problems, I know he isn't the same person I fell in love with 15 yrs ago but nobody can really tell that he is not the same because they don't know him the way I do. It is a very hard job to be a caregiver 24/7 and being pulled in so many different directions with kids, and homework, and work, and dr appts, and housework, and trying to do things for myself so that I don't run out of energy to deal with day to day problems. I am so frustrated with so many different feelings that I am experiencing with the progression of this disease I feel so anxious a lot of the time and sometimes I don't know why or what to do about it, I have a hard time attending church because I don't feel comfortable at church all the time. It is getting harder and harder to leave him at all, he forgot how to write his name the other day and he has also been getting up and turning the nintendo off right in the middle of him playing it, that is so not like him he would play nintendo all day if I would let him and to be honest sometimes it is not worth the fight so I let him play because I can't stand the tantrums. The whole sweethearts ball thing made me realize that we are at a point where he is not able to do a lot of things that we use to enjoy doing, I hope the wheelchair will give him some energy to at least go places together as a family and that he won't get so worn out.
I have a feeling we don't have a lot of time together and I want to make the most of it, but I can't do that if I have so many energy leaks that I can't keep up with everything I don't want to put him in a home but I also have a family to take care of and children to keep healthy and sane. I hope that he can stay with us until his time on earth is done my goal is to make whatever sacrifice I have to, to keep him alive well to the best of my ability and that he will enjoy his last days here at home with us and laughing as a family and enjoying each other without the stress of daily living.
Friday, January 27, 2012
Family Journal
My counselor that I have been seeing has given me so many ideas that I have tried and I absolutely love them all. He suggested that we start a family journal he suggested it before christmas but I forgot totally about it with the holidays and things so I finally got one out and it is so amazing. He suggested that we set it out where ever we will see it constantly and to treat it like it is gold, he also said to make sure that everyone knows that anyone can write in it and read at anytime. The kids have really grasped this concept and they are writing things about school, and RaKelle even opened up to me about some things that she never has before it is so awesome. It has given all of us an opportunity to write stuff that we don't want to talk about and we can answer things on there too. It will be an amazing thing to read when his time here on earth is over.
Another suggestion was to start some traditions with just the kids and I that we do every week, or month, or as often as needed that we can do when Jaren passes away and that they will look forward to every week, or month. So we started to have sleepovers in my room RaKelle sleeps in there on Thursday nights since she doesn't have to go to school until later on Fridays, and Ashlyn sleeps in there on Friday nights, and Braxton sleeps in there on Saturday nights. They love it, they look forward to it every week and they count down the days till they get to do it again, they like that everyone has to go to bed on their night but they get to stay up later with me and watch TV or a movie and then we go to bed. Our neighbor made them Daddy Quilts for Christmas out of Jaren's old clothes and they are so beautiful so they wrap up in them and they use them as covers at "our" sleepover!! It is so neat to see how excited they get to sleep in my bed.
We are still waiting on Jaren's wheelchair, and now he has to have a new insulin pump so we are getting all the paperwork done for that now so much fun for me (not), but in the end it will be worth it (I hope) I know he will not be able to learn a new pump so ALL of his care will be on my shoulders except testing his sugars since he can still do that, the new pump that we chose still uses the insets which is the tubing, so that will be nice too even though I have had to do that for awhile now because he forgets how to do it or he does it so different that the catheter gets bent and he doesn't get any insulin at all. I know I will have to be more attentive to his diabetes but hopefully it won't be a huge adjustment for him because change does not sit with him.
He has been going to Taylorsville senior center on Tuesdays with his friend Noel and they enjoy it. My friend picks Jaren up on their way to the center and then I pick them up from the center and take them home it works out so nicely and it gives us some time to get things done without our little shadows following us wondering what we are doing and why we are doing what we are doing.
Another suggestion was to start some traditions with just the kids and I that we do every week, or month, or as often as needed that we can do when Jaren passes away and that they will look forward to every week, or month. So we started to have sleepovers in my room RaKelle sleeps in there on Thursday nights since she doesn't have to go to school until later on Fridays, and Ashlyn sleeps in there on Friday nights, and Braxton sleeps in there on Saturday nights. They love it, they look forward to it every week and they count down the days till they get to do it again, they like that everyone has to go to bed on their night but they get to stay up later with me and watch TV or a movie and then we go to bed. Our neighbor made them Daddy Quilts for Christmas out of Jaren's old clothes and they are so beautiful so they wrap up in them and they use them as covers at "our" sleepover!! It is so neat to see how excited they get to sleep in my bed.
We are still waiting on Jaren's wheelchair, and now he has to have a new insulin pump so we are getting all the paperwork done for that now so much fun for me (not), but in the end it will be worth it (I hope) I know he will not be able to learn a new pump so ALL of his care will be on my shoulders except testing his sugars since he can still do that, the new pump that we chose still uses the insets which is the tubing, so that will be nice too even though I have had to do that for awhile now because he forgets how to do it or he does it so different that the catheter gets bent and he doesn't get any insulin at all. I know I will have to be more attentive to his diabetes but hopefully it won't be a huge adjustment for him because change does not sit with him.
He has been going to Taylorsville senior center on Tuesdays with his friend Noel and they enjoy it. My friend picks Jaren up on their way to the center and then I pick them up from the center and take them home it works out so nicely and it gives us some time to get things done without our little shadows following us wondering what we are doing and why we are doing what we are doing.
Sunday, January 1, 2012
Welcome 2012!
I can honestly say I am so glad that 2011 is over!! I would recap what happened but to be honest my days, weeks, months, all mesh together and I can't remember what honestly happened. I do however know what happened the last couple weeks of December and I want to remember someone very special. My grandma Adams passed away December 16, 2011 from complications with pnuemonia so the Tuesday before Christmas we had to go to Idaho for a funeral. This picture was taken in April of 2009 it is 4 generations of the Adams girls. That was the last time that I saw her, I know its sad but it is so hard to pack up everyone especially Jaren and all of his stuff and go somewhere he gets tired and ornery and so we just didn't have an opportunity to go up.
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| 4 generations of Adams girls |
Christmas came and went and we had a really good Christmas. Christmas eve we have a party at my moms house and my siblings and I rotate families my older brother Mat and his wife Becky and their cute kids had us for Christmas this year and he gave us the best present. He used his points that he had saved up when he travels and was able to give us a 2 night stay at a hotel in Layton. The kids reaction when they opened the present was really fun, they were already trying to decide what swimsuits and pajamas they were going to pack. We went to Layton and stayed at the Townplace Suites and it was so nice and relaxing. The kids got to go swimming in the pool and Jaren and I even got in the pool with them the first night and it was so fun it was almost like old times Jaren had energy and he was laughing with us and playing around in the pool with us it was so awesome. We went to Layton Hills mall Friday and got to shop a little bit because we all had gift cards that we got to use. We then went to see Alvin and the Chipmunks with my brother and his family and it was the cutest show we loved it, then we went to their house for dinner that night and ate together and played Wipeout on the Wii and laughed and just had a great time. We even got to go to dinner on Thursday night to Red Robin I had a gift card for there from a while ago but it was walking distance from our hotel so we walked to the restaurant and ate. We did not want to leave it was so nice. But everything comes to an end I guess. It was just what we needed somewhere to go that wasn't too far away in case something happened but far enough away that we felt like we got away from our everyday life. It was very weird though to share a bed with Jaren again I haven't slept next to him for a couple months now and it was "crowded" now that I am used to having my own space when I sleep. He did really well on our "vacation" and he really enjoyed himself. So THANK YOU, THANK YOU, THANK YOU!! Mat and Becky for the awesome weekend we absolutely LOVED it!!! That was the best way to say goodbye to 2011!! to bad we couldn't leave all the trials that will face us in 2012, but I was able to relax enough to fill my tank and be able to handle whatever awaits us in the coming months.
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