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.