I am so ready for Spring!

Here at the Gordon house, we are so ready for spring.  I have to say though we haven't had the illness at our house this winter like we usually do.  Jaren wasn't in the hospital at all this winter.  He did end up in the hospital the middle of March, he was fine all weekend and one Sunday afternoon he said I don't feel so good, I took his blood sugars and he was high so I gave him some insulin and he wasn't feeling any better so I took it again and it had only gone down by 100, he started vomiting and couldn't stop so I took him to the ER so that he could be rehydrated because usually by the time he starts throwing up he is dehydrated and I can't get it under control myself.  When we got to the ER they were really busy but they started the IV and he started feeling better but they couldn't get his sugars to go down and they were worried about some of his blood work, his Anion Gap was opened and acid level wasn't going down either so they decided to admit him to the ICU.  It was a little stressful because it was about 1 am, when they got us up to his room the doctor came in and asked Jaren " what brings you here today?" Jaren looked at me and looked back at the doctor and said "um, a van" the doctor started laughing thank goodness and said "I guess I should have asked that a different way."  I had to laugh myself it was actually really funny.  I then had to explain to them that he suffers from Dementia because of the MLD and I had to explain what MLD was because not many people including doctors know anything about MLD.  Since that hospital visit he just hasn't been himself, his sugars have been out of control and I can't seem to keep him under 300.  I went to see my counselor and told him about it and he told me that the MLD could be making the brain do things that the insulin is being affected and not working correctly.  I don't know what to do about that besides just taking sugars and giving insulin.  The pain has been so bad as well that he has had to have major pain killers to keep it under control.

It has been a really tough year so far.  RaKelle had to have surgery on her knee to finally fix it.  I really didn't realize how much she helps until she couldn't.  She is awesome!! I was focused on her a lot and I was trying to take care of Jaren and it was really hard.  I didn't feel like I could leave him alone while we were at the hospital so I asked some neighbors to check on him.  It was a LONG day but we made it through, she is doing really well one more week and her brace gets to come off.  When Jaren was in the hospital I was so focused on getting Jaren better that I kind of let her fall to the back burner and she was sitting in the hospital with me and she put her foot up to elevate it and her whole foot was swollen I felt so bad. 

Jaren has not been sleeping at night he wanders the house and wakes everyone up.  He gets confused on where to sleep.  Last week he woke Braxton up because he wanted to "talk" at midnight.  Braxton didn't have the heart to tell him he was tired and to go back to bed so he sat up and listened and talked to him.  I asked what he talked about and he told me that he said "your mom is so pretty I want to marry her."  and Braxton told him he was already married to me and Jaren told him he wants to get married to me again. He said that Jaren kept talking about Ashlyn and how sometimes she is not nice, and he was talking about RaKelle and how tall she is.  He talked a little bit about nintendo.  Needless to say I couldn't get him up on time and he was late for school.  I thought it was super cute of Braxton to stay up with his dad and just listen to him. 

I get overwhelmed when they miss a lot of school but I feel like that is not something I want to fight them on.  I feel like sometimes they just can't go to school and if they do they won't be able to concentrate so it really doesn't do them any good.  I know they have to send letters home when they have had to many absences but I can't handle when I read them, that just makes one more thing I have to work out with the administration and it is overwhelming and frustrating even though they are super nice about it.  I am trying my best to raise my kids and take care of him sometimes it is not as stressful as others and sometimes it gets to the point where I just want to run and hide and cry a lot.  Sometimes I just want to stay in bed and sleep until it all goes away, but I know that is not possible.

Advocacy Day

The kids and I had the opportunity to go up and speak at the State Capital.  What a great experience for us.  The kids did an amazing job telling their story and telling how it really is.  We were able to let people know how hard it is.

The Deseret News was there and they did an awesome article on our family, and they sent out a photographer to our house to capture us taking care of Jaren.  If you would like to check it out go to http://www.deseretnews.com/article/865595003/Wife-caregiver-says-families-living-with-dementia-need-support.html

I don't know if I will make any difference now but hopefully in the future it will help others. 

I went to the grocery store yesterday to get a printed copy of the paper and we were on the very front page in the headlines.  It said to read the article on B1 so I went to it and a huge picture of Jaren and the girls.  There were a few more in the article as you read on.  The kids were very excited.

Thank you Deseret News for getting the word out and for you wonderful story!

Celebrate like it is the last!

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

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

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

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

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

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

Update! update!

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

Meeting with the social worker

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

Park City

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

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

Bake Sale

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

Meeting with the Salt Lake County Mayor

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

School is coming fast

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

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

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

some good, some bad

Good

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




Bad


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