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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