Carers- Coping with illness #specialsaturday


I hate getting sick for so many reasons.  I hate not being able to function to full capacity in general but it is even worse when I can’t care for my son.

Right now he does generally okay and can care for himself in some ways.  He is able to go get snacks for himself.  He could even make himself a frozen pizza for lunch.  He can even make grilled cheese for himself.  However he isn’t always motivated to do that and will literally go hungry until someone does it for him.  Aspergers?  Teenagitis?  Or as he says “I am just lazy”.  Whatever the cause, the fact remains the same.  I remember being the same way when I lived at home so I don’t usually worry to much about it.

My husband though does not help him as much.  Many times Sheldon asks for something.  If I am in the middle of something or don’t feel well my husband will tell him to get it himself.  My son will then not get it for himself.  Those are the simple things.

Schoolwork, when he gets upset, dr. appts, medications, insurance arguments, dealing with school (which is much less now!) is all on me.  Sheldon has a better idea of what meds he is on than my husband.  My husband is forgetful and could never keep track of it all.  Dr. appts & insurance- my husband won’t even go himself because he finds the whole process too difficult to manage.  Schoolwork & meltdowns- oh no, not happening.  They have become physical with each other because they just egg each other on.  So no, no, no.

So when I am sick I just push through as best I can.  But sometimes major things happen.  Last year I had to have surgery and this definitely slowed me down.  Although not too much.  My co-workers still laugh about my post anesthesia emails.  Of course there was a crisis at work while I was in surgery.

Anyways I would not want to repeat all of that fun.  Like I have a choice.  Which clearly I don’t because I now have excruciating pain in my left lower abdomen/groin area.  Which I of course had to diagnose myself because that is kind of an obsession of mine.  I wouldn’t go to the doctor until I had already figured it out.  I was good though I did not tell the doctor what it was I just told her my symptoms.  She then said exactly what I knew she would say.  I have a CT scan and a referral to a surgeon for a probable hernia.

Yep apparently I get to have another surgery.  I have heard from multiple people that hernia surgery is a bitch to recover from.  Sigh.

After the appointment I came home and explained to my son that I would need his help.  This all means something to him since not only did I have surgery last year but so did he.

The first night my son did really well and specifically asked my husband for what he needs.  My husband complied because his bedtime list is very short.  This lasted one night.

Last night I went in and explained I was going to take pain medication to sleep and that he was on his own with his dad.  I handed him his pill box and drink.

1) later on he yelled for his dad, his dad yelled back instead of getting up.  The exact thing my husband gets aggravated with me for when I do it- funny.

2) he never took his pills or went to sleep.

3) he lodged a complaint this morning about all the things his dad didn’t do for him.

4) already today I have taken him food and explained what time his grandmother was coming & she would bring food. I explained I was going to lay down until then and he could get his own snacks.  He yelled for me & so I re-explained.  He never went down to get snacks.  Maybe he is living off the goldfish and cheese-its in his room?  Whatever, he won’t starve, his grandmother will be here in a couple of hours.

So clearly I need a plan!

They have sort of functioned without me when I have gone on business trips in the past.  Although they just called me multiple times.  Also that was always a short trip.  I won’t even go anymore unless I can take him with me.  It is just easier that way.  I also know I should still be here and still be able to “oversee” things but they do need to learn to function without me.

1)  I plan to wait until after school year ends for surgery, same as last year.  By the time I actually see the surgeon that may be when they can schedule anyways.

2)  his neurologist appointment is in May so I can handle that.

3)  Him and my husband both need to be trained on what meds he takes.  Will make a list & make sure they know what he takes.  I have simplified it since he is no longer at Brick and Mortar school so this shouldn’t be too hard.  He doesn’t even need his allergy meds anymore since he is staying home.  go figure!

4) the food issue he is just going to have to get stuff for himself.  I know he does at times.  We already make sure he has things here at all times that he can make by himself.  He can do this and it would be good for him.  His dad and I will still make dinner because obviously we need to eat too but the 8 million snacks because he is a teenager well he just has to get himself.  Maybe he won’t eat as much, he certainly isn’t starving!

5)  Will have to pray for no meltdowns although my husband has gotten better at just letting him ride it out & self regulate.  Sheldon has gotten much better at self regulating and removing himself from the situation.  Sheldon’s former, good psychologist, actually worked on this with them together a lot.  I think they will be okay.

6)  I will have to make a list of what he needs for his bedtime routine.  He will have to go to bed before 11 or he will be on his own for that too. Trying to keep him on that schedule is about impossible but he just needs to do it.

So in our case maybe this will be a good stretch of his independence.  Also a good time for my husband to help out some.   It is stressful to be the carer and have your own illness.  I know that in other houses with younger, more dependent children it would be more difficult.  I honestly can’t imagine if I had had to have surgery 5-10 years ago.  Not a good thought at all!!  This post would be much different.  Hell I might even say no surgery & live with the pain.  But he has made such progress.  I know we can do this as long as we wait till after school ends!!

Special Saturday

I copied the following explanation from Deb at Aspie in the Family because she is awesome & I am worn out today!! (the link is for her wonderful post for this week)

This post is for Special Saturday, an online ‘global’ campaign that aims to raise awareness of children with special needs.   Every Saturday a prompt is given to encourage people to write or tweet about something in order to help raise awareness of special needs.  This week’s theme is on carers and how we deal with stress.

If you would like to learn more about Special Saturday then you can do so though the following ways:

Facebook – http://www.facebook.com/SpecialSaturday

Twitter – follow @Specialsat and use the hashtag #specialsaturday

The Blog – http://specialsaturday.org/

Wendy at the Savette Gazette – http://www.savette.com/category/special-saturday/

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Comments

  1. I am so sorry to hear that you need to have surgery and down time. I struggle non-stop with little illnesses here–the usual fare from public school. It drains me, and needing to care for my 5 year old son on top of feeling like crap, well, blah.

    You wrote:

    “However he isn’t always motivated to do that and will literally go hungry until someone does it for him. Aspergers? ”

    Ha! Okay. I think that is part Aspergers, because my 79 year old Dad is just like that. So is my hubby’s Aspie brother. the only reason my hubby fixes food is because he will starve otherwise. I love skillet meals and lean cuisines. I feel ashamed at times since my mom was a SAHM, and cooked every meal. I’d rather arrange my collage collection or read blogs.

    You have a really good plan for how to approach your upcoming challenges. I wish you the best of luck.

    Take care,
    Lori

  2. I really feel for you. As carers we cannot afford to get sick, yet the stressor caring makes it more likely. I am terrified of it happening and, as a lone parent, ending up with my kids being taken into care. I’ve actually taken heart from reading this post and realising that with a good plan, anything is possible xx

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  1. […] more recently I have had horrible pain in my lower left quadrant. I discussed it more here and by the way the plan for their survival without me failed. This was tested when I went to the […]

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