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. :(