ALS SUCKS

I always post about how much fun we are having and all the visitors we have.  The boats rides we go out on, the fish we catch…I never post about the shit days, well today was one of those.  From the second Duane woke up it was bad.

I moved his feet too fast.

His coffee was too hot.

Even though I asked to floss and brush his teeth 3 times, he ignored me and then told me that a “normal person” brushes their teeth 2 times a day and I need to just start brushing his teeth.

His shake was too thick and I tried to make him drink it too quick.

I moved too fast when I was putting on his shirt. 

I never help him, I just stare at him and don’t help.

I parked the scooter too close to the car.

I am always doing two things at once and never focus on him. 

didn’t eat lunch with him – I was feeding him and wanted to focus on him.

I was sad when he made fun of me for not being able to put my new spinning bike together.

This takes us to 2pm…The day didn’t get better and this was no where near a bad day.  

But today sucked.  ALS sucks.  What ALS does to the body sucks.  It’s the worse disease there is.  People with ALS keep 100% of their mind their body just stops working.

– xoxo Victoria

 

 

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6 thoughts on “ALS SUCKS

  1. So sad for you Victoria , I know you are doing everything you can for him and to make him comfortable . You are both too young to be going through this, sometimes the more you try to do for someone the more frustrating it gets. Tomorrow will be better, just start each day fresh and you will get through this. Love you. Auntie Sue.

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  2. I am sorry for your rough day. We all know how much you do & how you do the best of your ability. I know what you have to experience daily has to wear you down. I saw my Mom mentally have to deal w/my Grandma as much as physically. Make sure you are taking care of YOU the caregiver as well. YOU are a part of this equation so don’t lose focus on you. Holding you up in my prayers…..

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  3. Aww so sorry. You are amazing in everything you do. And very much appreciated everyday even when it’s not a bad day. Wishing you sunshine, rainbows and happiness today

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  4. Isaiah 40:31
    But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

    Philippians 4:13
    I can do all things through him who strengthens me.

    I Love You Victoria😘

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