Thursday, July 14, 2011

Putting Your Own Oxygen Mask On (first)

And a unique component to being caregiver to this particular 'disability' (let's call it that for the purpose of this post, at least), is that few, if any, others even know you are in this role.  Most caregivers are given encouragement and help from others.  Meals are brought.  Doors are opened.  Help is offered.

But not when dealing with this 'invisible' handicap/disability.  You are alone.  And the person you are caring for doesn't have a clue how much you are struggling and how hard you are working.  He doesn't comprehend that you need a break.  He doesn't understand the effort required just to get through the day.

We have multiple, serious problems going on in our lives right now.  So serious that friends are bringing meals and offering to help.  They see the external issues, and yes, they are very difficult.  But those issues are a drop in the bucket to this silent, invisible burden that I carry all alone.  While friends are offering sympathy and support during these trials we are facing, my aspie spouse is as he always is.  Completely detached and unaware of any emotional needs his wife may have.  But right now she needs emotional help and encouragement more than ever before in her life!  (Big Scream, Uncontrollable Sobs.)

As all of the pressures have been building and building and the lack of sleep (for me, that is, he sleeps through anything) adding up to where I can barely walk straight from exhaustion, he sees me lying down and says "What's wrong?"  I've learned the only 'safe' answer to that is 'I'm tired.'  This time that tiny part of me that tries to never completely give up hope that he could one day empathize took over and I actually said 'I'm exhausted'.  His response "Well, I've got to go to work."  Just a 30 minute nap while he watched the children could've rejuvenated me enough to function better the rest of the day. (I know, I should've said as much.  But in this state, I am unable to think logically and clearly.  I just needed some expression of understanding and help!)

OK, I think.  So maybe I can rest when he gets home.  He feels he has to go to work (though he has many weeks of unused vacation hours built up!), but when he gets home he will remember I am suffering right now and could use a break. Once home, he never once asks how I'm doing.  Around 9p I ask him to do the dishes and get the kids in bed because I desperately need to get some sleep (hoping for the first solid night's sleep in well over a week).  He argued, acted disgusted, glared, and grumbled.  There was not one inkling of empathy in his response.

Normally I am overcome with guilt and would work despite my weakness and exhaustion, but this time I went to bed.  If he can't take care of his wife when she is nearing nervous and physical breakdown then I'm going to have to take care of myself and not give a damn what he thinks about it.

Sorry for the negativity.  I'm at a very low point right now overall.  :(


  1. Please do take care of yourself. I totally know how you feel. My husband and I are in the middle of relocating so people are helping me because they know I'm alone, but I don't actually feel much more alone than when we are living under the same roof, so I totally get the invisible burden. Please do take care of yourself, you husband will always take care of himself first because he is made that way - we have to learn how to do that because we are so used to give, give, giving. Oh and when you are trying to tell him how you feel, melodramatic is the only way to go! He can't do empathy, it's just not going to happen. When you can think straight try to explain in terms of consequences. You are under stress and exhausted therefore you can't do x,y and z - so please can he do it. God bless, keep praying (I will too)

  2. Sorry to hear you're doing as badly as me!
    I have thought about the line about putting your own mask on first several times since your previous post.
    Not that I've done it, but I've thought about it.
    Thinking of you and hoping things get better for both of us!

  3. Thank you ladies for the encouraging words!


  4. Praying for you! I could have written this post. I think you are very special, to be able to cope with your situation. Being an aspie wife is not for the faint of heart. I admire you!

  5. I have lived "your life" over 30 years....I'm so exhausted and terribly lonely!
    I know what you are going through and I just can pray to God to help us...

  6. Just looking for other women who can understand what I'm going through. . . feeling so lonely. Looks like I found you all :)

  7. "...Normally I am overcome with guilt and would work despite my weakness and exhaustion...

    If you worked despite your weakness and exhaustion, you'd have given him a reward (clean dishes without having to scrub them himself *and* without having to help you get less tired first) for how badly he treated you. :( Your husband is not God and being God's servant doesn't mean being your husband's servant.

    "...but this time I went to bed. If he can't take care of his wife when she is nearing nervous and physical breakdown then I'm going to have to take care of myself and not give a damn what he thinks about it.

    "Sorry for the negativity..."

    Negativity? This is *positive*! You stood up for yourself! :D

  8. Thanks for a helpful blog! We also have multiple, serious problems going on in our lives right now. I am working hard on finding myself again in all this. We've been together for 16 years and I only found out about his AS half a year ago. All our struggles suddenly 'made sense'. If I was financially independent I would have lived on my own again now. I too feel more lonely living with him than when I'm on my own. Having said that, I know it will be incredibly hard for me to break up. We have talked about a separation, and he doesn't quite understand why I can't hold out for the sake of our child. For my own health's sake, I know in my heart what I have to do.

  9. A little afraid to post this...sometimes my hubby checks history. He doesn't believe in AP, but he and my son both have it. They clash with one another and have different manifestations. I can relate to your many sad, conflicting feelings. I recently allowed myself to have an out burst--never sure if I've caused damage to our marriage in those situations. We are both church leaders, busy, busy, homeschooling, and I teach at a co op. Life with this added issue (AS) is so exhausting and lonely. I must remember my "True Lover" is Christ Himself, though I will always long to be understood and appreciated by my spouse