now what?

I am beyond my stress breaking point at the moment.  Hospice has decided that Jaren is too stable to be able to stay on hospice so they are taking him off of the hospice program which is good that he is stable enough to not have hospice but what am I supposed to do? they are coming tomorrow to do the exit paperwork and he will have to give back his cane, and his walker, and he won't be able to get meds anymore through them.  I have researched taking him other places but they charge to much for care I would be working to pay for him to have care what a waste.  I am frustrated that when you leave hospice that they have to take everything away.  With MLD we fall through the cracks with so many other programs that I get so frustrated and angry that there is not more to help people in our situation.  Medicare is giving his pump supply place problems and not wanting to pay for his pump supplies because he is on hospice so I have been fighting with them because hospice will do nothing for his diabetes at all, he has not had supplies for his diabetes since December because of Medicare.  I am so tired of fighting with everyone about everything just to get something for him.  Now I have more on my shoulders because I will have no help from hospice, I will not call hospice again unless I absolutely need it I don't want to get help and then have them swipe it out from under us again, I can't do it this week has been an emotional roller coaster that I don't have time for or the patience for.  The diabetes supply store contacted me earlier this week also to let me know that he has to keep track of all of his blood sugars and there has to be at least 4 a day for medicare to keep the supplies, how on earth do they expect me to track it when he doesn't even take his sugars regularly because he can't remember how to take them or doesn't take them because he can't remember that he needs to take them. 

Soccer is starting this week also and the kids are excited but all I can think about it how am I going to do it all and keep the kids involved in activities? I just can't do it all, the kids might miss a week or two of practice because I can't be in forty places at once.  I will try my very hardest but I can only do so much before I shut down to a point where I can't function.  Hopefully when I get used to no help from hospice I will be able to get on a different schedule and be able to do MOST of it without having a breakdown.

I guess I have something more to learn with all of this stuff that is being thrown my way, sometimes I am just in survival mode and just keep going.  Sometimes I wish I could just have a spouse to talk to about things and not feel like I am talking to a child that doesn't understand anything I am talking about.  I just hope that I am learning enough that I will not regret any of the decisions that I have to make.  I want to be able to face my kids and say I am doing my best and I know you didn't have a "normal" childhood but look what great kids you have turned out to be because of the trials that we went through together.  Now that I have complained enough I have to go get him ready for bed so I can get some sleep to wake up and start all over again. 

need to vent!!

I am so frustrated right now I could scream, they are going to drop Jaren from Hospice most likely in a week, because he is too stable.  Now what they have helped me out so much I don't know what I am going to do, not to mention now that we won't have hospice anymore we are losing everything his cane, his walker, all of his meds so frustrating.  I can take him to a day program but it is $8 dollars an hour I will be working just to pay for his care.  Needless to say this week has been a living hell.  I called to make an appointment with his neurologist because with hospice we can't see the neuro but if they are going to drop him I have to take him in and get meds and a cane or a walker I have called two days in a row to get an appointment and the "person" that makes the appointments for his Neurologist is covering for someone also and so I have left 2 messages and not one phone call.  I think I want to change my mind about bring on the challenges, I think I am done for awhile.  So the daily routine we have is about to change AGAIN which means more for me to do.

Then why do some people get embarrassed for the things that Jaren has to do or use to help him? it just isn't right, if you can't accept him for him and the equipment that he has to use then don't come and see us or go with us anywhere.  Why do some people just not get the fact that we are NOT normal but we are STILL  human and he also has feelings just like everyone else.

I am having one of those weeks, I can't do anything without him standing right behind me over my shoulder telling me how to do it different and how to, I make something for dinner and he doesn't like it or I ask what sounds good for dinner and he says I don't know, so I suggest something and it never sounds good.  The nintendo playing is driving me absolutely nuts, I can't get him to do anything lately and then I can't get the kids to do anything because they want to play nintendo with him when they get home from school.  Thanks for listening to me gripe.

Jessica and Brian were so nice to take us snowmobiling this last weekend, we had a great time, the kids enjoyed it so much. It was really cold but we still had fun. Braxton was in 7th heaven because he rode with Brian and he did some fancy stuff with the snowmobile and Braxton couldn't wait to go to school to tell his friends that he got to do some cool tricks. They were exhausted that night and went to sleep very quickly it was great. Thanks Jessica and Brian for taking us!!


Ashlyn will be turning 10 on Sunday, I can't believe it, she is growing so fast, and she is acting so much better maybe she will give me a little break until she is a teenager.   Our youngest Braxton will be 7 in two weeks, he is growing like a weed and hasn't stopped.  RaKelle has been asked by our bishop to sing a solo in church she is amazing with anything that has to do with music, she will be singing this Sunday, I don't think she is even nervous she will do an amazing job.  I wasn't sure if she would be able to do it loud enough but I went over with her to practice the other night and I couldn't believe how amazing she sounded. 

A DAY IN MY SHOES

I just want to write a little about what a day is like at our house, the day begins at 7:00 am I usually get up and get myself ready for the day and then get the kids up and ready about 7:30 am getting them ready is sometimes not that much fun sometimes they fight, sometimes they don't want to get ready on time and they sit around.  I am trying to get Jaren set for the day in between telling the kids to brush hair and teeth and shoes on, getting Jaren ready for the day is just as tiring as going to work.  I have to get meds ready for him, make sure he takes his sugars, and eats breakfast and sometimes I have to stay right next to him to make sure he takes his meds, if people are coming over to see him either the nurse, or a volunteer from hospice I have to make him aware so that he doesn't get scared when someone knocks on the door, I have to tell him that we will be back in a few hours and that if he needs anything to give me a call at work or on my cell.   I feed them breakfast and we are out the door by 8:15 am on a good day.  I then go to work from 9:00 am to 1:15 pm I work with 4th graders and Kindergarteners and make copies, and sub in classes that need some help or if another aide isn't there.  I get home from work and make sure Jaren gets lunch and give him more meds.  I then start some laundry or dishes and then it's time to pick the kids up from school.  When the kids get home from school they have a snack and then they do chores, I make the kids do chores because I can't do it all myself.  I have to put Jaren's name on the chore chart also because he needs to do chores too, and he hates doing the same things over and over every week.  Our chore chart consists of living room, dishes, bathroom, garbage and sweep, those are the daily chores that they rotate weekly, and every Thursday they have to sort their own laundry so that I can wash it on Friday's on my day off then the weekend they get to fold it all and put it away.  After chores are complete I try to get them to do homework while I am making dinner, we eat between 5:30 and 6 pm on good days, during soccer season and when things come up we don't eat until later.  After dinner we watch a little tv and try to get the rest of their homework done.  Then it is about time for bed so we start the bedtime routine, I give meds to the ones that need it, and scripture study and family prayer then the kids go to bed, I can't go to bed until they are asleep or I have kids in bed with me.  I also can't go to sleep until Jaren goes to sleep or he will get up and wander or do things that he shouldn't be doing.  In between all of my day to day fun I have to make sure Jaren is taking his insulin and his blood sugars.  I then get to go to sleep and hope that I get more than 3 hours of sleep in a row, then the alarm clock goes off and it starts all over again!!

I felt like I needed to share with others what it is like living in my shoes even for one day, I have probably left out a ton.  Somedays are not as stressful as others but some days I don't want to get out of bed especially when Jaren didn't sleep that well the night before.   I am not trying to get pity I just feel like some people do not really understand how hard it is to feel like a single mom and have a spouse living in the same house but can't do a lot of things that most spouses can. 

one of those weeks

This week has been one that I do not want to remember, Jaren woke up with pink eye on Monday in both eyes, and he has pneumonia.  He has been on heavy antibiotics and drops for his eyes and the eyes are looking better but the coughing is still horrible and it sounds awful and like it hurts really bad.  Because of the infections I can't keep his sugars below 200 which is really high.  He is not a very fun person to be around when he is sick, he is ornery, and he whines, and mopes around all day but if I were him I wouldn't even want to get out of bed in the morning so I should just be thankful that he got up today.  He doesn't sleep well at night either so when he is sick it is worse, and when he doesn't sleep I don't sleep I have to stay up with him and make sure he doesn't wander. 

We went to the diabetic doctor on Tuesday and she would like to take him off of the insulin pump and put him on an insulin shot that he would only have to take 2 times a day once in the morning and once at night, which could be a good thing because he would only have to take his sugars twice a day, but his diet would be very strict which means I would have to lock up the cupboards when I am at work and what would happen if he goes low while I am working I would not even know until I came home and he was passed out or something.  Why do some decisions have to be so difficult? Well if there were not difficult decisions we would not learn anything, but do all decisions that I have to make have to be so hard? I can't talk to him about what he wants because he doesn't even remember talking to the doctor about it, so I am on my own.  I can't wait until this week is over, it has been a stressful week and I just want to crawl in bed and stay there until things get easier!! too bad that won't happen anytime soon so I better just take a deep breath and suck it up and hope the week will end better. 

One question I have this week is why do I feel like I am alone?  I feel like I can't hang out with friends anymore because of what we are dealing with and I can't always get away to do the things that others get to do.  I know I have a lot to deal with but don't shut me out because I am not like normal moms or wifes.  I like to do things with friends even though I don't get to stay out for a long period of time, and sometimes I might have to bring along a child or two. 

quick update

It has been awhile since I posted last, I have been so busy with work and the kids school stuff, and Jaren, and soccer season starts soon so I have been working on soccer things since I am on the board.  This month seems like the longest month kind of wierd since it is the shortest month it just will not end!!

Jaren is doing ok he has ups and downs this week has been a down week he has come down with a cold and it has knocked him out completely I think he might be back on the mend this week (hopefully).  Our social worker from Hospice was able to get in contact with the Beehive Home for the elderly and they do day programs for a cost, so she is now working on figuring out a way that he can go to the Beehive home so he doesn't have to be home every day all by himself.  Wednesdays and Fridays Hospice has volunteers that come in and sit with him so I am trying to get him into a program on at least Tuesdays and Thursdays and possibly Mondays. 

I still enjoy my job very much, I work with some amazing people and I enjoy working with the kids that I work with.  The kids are keeping busy with homework and RaKelle and Ashlyn are in the school choir so that takes up some time also.  RaKelle and Jaren and I were able to go to Middle School orientation a couple of weeks ago, I can't believe I have one old enough for Middle School.  She is not very excited she is a little nervous, she decided she wants to play the flute.  This next year is going to be an adventure for all of us.  Ashlyn is really excited for soccer to start again, and she is doing really good in school.  Braxton is the funniest kid he says the craziest things that make you laugh and then he laughs and his laugh makes you laugh harder, needless to say we have a hard time with family prayer.  I don't have much time to do a lot, Jaren's care takes most of my time, but I am happy to do it (most of the time) sometimes he is more work than I want to even think about.  Thanks to the Elders Quorum presidency that took him to a movie this week.  I am so thankful to have good friends close by.  Thanks to Mary and Greg for listening to me complain and anything and for the help that they give me and their willingness to do anything for me.  They watch the kids on short notice a lot and they never complain.

Hello Reality, Welcome to the Gordon House

This week has been crazy and a bit of a reality check for us.  Jaren has been having a hard time with bladder control so we called hospice and they of course were really good and brought some stuff to help out with that, We also made an appointment with McDougal Mortuary and met with them today, that was the real reality check, WOW I knew funerals were expensive but I guess you don't realize HOW expensive they are until you sit down and crunch the numbers.  The lady we met with was really, really sweet and she cared about the situation it seemed, and was so very, very helpful, we picked out caskets and we were put on a payment plan so that I won't have to come up with the money all at once.  I was surprised at how they made it so comfortable to talk about without making it horrible to think about and to plan.  I am so glad we took this important step in the planning and preparing process now I will know for sure what he wants and I DO NOT have to make all of the decisions by myself.  I am really shocked at how they can work payments out for any budget the payments are very reasonable and doable.  It was still very hard to think about, we are still young I should not have to be planning a funeral, I know, I know you should always prepare for stuff like this, BUT I think it would be much easier if we didn't HAVE to think about it and that we could plan it because we wanted to not because we know what is coming!!

After we met with the mortuary I had to take another trip to the Doctor, this time for me.  I have a really bad sinus infection and I let it go on to long because I have had a dull headache for about a month and just figured it was stress, I woke up this morning and my top teeth hurt so bad and my face felt like it was going to blow up.  What a long day!!  The hard part about being sick and being a mom and a caregiver is I don't get a day off I still have things that need to be done and people to take care of, so hopefully the meds will work really quick and I will be feeling better really soon.

Challenges!! Bring it on!!

I think every year starts out with really, really hard challenges.  This year has been no different, the first week was ok, last week was extremely draining.  We went to 7 different doctor places none of them for Jaren! I took the kids to see their counselor on Monday and there appointments are each an hour long so we were there for 3 hours but I don't want to drive up there three different days back and forth.

Tuesday I went to another appointment for me yes it was nice to have time by myself even if it was at a doctors office, but I was a little frustrated by the time my appointment ended I wanted to cry.  We had a incident a couple of weeks ago where RaKelle and Jaren got in a fight when I was not home and RaKelle got yelled at by Jaren and it scared her she was hysterical, I talked to her about it and she said she was afraid and she didn't know what to do because her dad had never ever yelled at her before I made the two of them talk about it, I then realized that I can not leave them alone with him he can't handle the pressure, so of course I was frustrated because I will never be able to have me time without either some of the kids or Jaren.  I went to the bishop and we came up with a solution that when I need to have some me time I would find a babysitter for all of them or for at least some of them, we then had a family meeting together telling them the plan and they all agreed that was the best thing.  I can NOT function without some ME time at least once a month I will have a breakdown.  I talked to RaKelle's counselor about the incident and he helped her work through some things and I talked to Jaren's doctors so that they could change some things so he wasn't so irritated with everything.  I then told my counselor and she told me that she had a legal obligation to turn us into CPS that totally freaked me out, I wanted to talk about it so that I could figure some things out not for her to tell me that she was going to turn me in. 

Now for the next day, Braxton came home from school and he was really whiney, he said to me mom do I have pink eye? my eyes are burning, I said "no" and felt him and he was burning up with a fever of 102.2 I gave him some motrin to bring the fever down and I took him in because he had a really bad cough, they started him on an antibiotic and sent us home.  The next morning he woke up with a croupy cough so I called our regular doctor and they fit him in that morning, we went and when the doctor came in he said " I am worried about his blood pressure, can we take it again?" they took it again on the other arm and he said " that makes me worried his blood pressure in his right arm is higher than the blood pressure in his left" so they did an exam and then said can we check your blood pressure again.  They took it 10 times and he was so brave he just let them do what they needed to do.  The doctor then said I don't think we are going to treat the croup yet but I think we need to do further testing on the blood pressure thing.  I guess when the blood pressure is higher on the right arm than it is on the left it means there is something not right with the heart, they wanted to do an EKG, and an angiogram but they decided they wanted to start out with x-rays so they sent us straight to the hospital for x-rays.  The doctor called that same day with results telling me that everything looked fine but that everytime he came in to the doctor they wanted to check his blood pressure. (talk about a scary day).  I then went and pick up the girls from school and RaKelle informed me that she thought her thumb was broke, back to kidscare. Last time I didn't believe Ashlyn when she broke her arm so I figured I would take RaKelle in to get an x-ray, sure enough it was broke in two places. 

Jaren actually slept all night on Thursday and of course I was up with Braxton all night with croup we went outside at 3 to clear it up so he could sleep.  Nope no sleep he could breath better, but he wouldn't go back to sleep. 

Now for the ending of the LONG week, We had the hospice doctor here on Monday and he checked Jaren out, new Medicare rules are making it so that the doctor has to recertify the hospice patient the nurse can't do it anymore.  Friday the nurse from hospice and the social worker came over and told us that we probably wouldn't be able to stay on Hospice much longer because he isn't declining physically enough it is all cognitive,  How stressful that is to hear I don't want him to decline faster but I also don't know how I will be able to do it without there help.  I guess I will go back to calling a ton of places again, I don't know that I can take the rejection again but I have no choice, I am determined to get the help that we need. 

I thought I was ready for the new challenges we would be facing, but I started to change my mind and then a new week started, even though the challenges are still here I am ready to face them so BRING IT ON!!! some days I might have to pretend that I can handle them and then fall apart when nobody is watching but we will get through it somehow with the help and support from friends and family that help us through a lot of things.  I know we only go through the things we can handle and that we will learn from the challenges, what in the heck am I not learning by all this that I need to learn?