Just had a Lightbulb Moment. Only scratching the surface of this and plan to dig deeper here as I am able: http://www.thealzheimerspouse.com/
But here's the thought: We aspie wives probably have much in common with wives of men who have Alzheimer's !
A few similarities:
1. Many of us know something is not working typically in our spouse's neurology, and yet we are NOT able to drop our expectations for our spouse to act typically.
2. They don't really know us. They can be kind and do things that are asked of them. But they don't really know who we are.
3. The odd ways and strange little things they do tend to add up and drive us batty.
4. We are caregivers in need of support and a respite.
Maybe we've been scuba diving for coping strategies in waters that haven't been chartered yet. Maybe it is the spouses of alzheimers patients who have the most wisdom to share with aspergers syndrome spouses. Same water. Different boat.
Thursday, July 28, 2011
Sunday, July 17, 2011
Frankly, My Dear . . .
So a bit of clarification on "not giving a damn."
It's not okay to not give a damn about another human being as a human being. It's not okay to wish he would go skydiving without a parachute. That's not okay. Jesus says hate is the same as murder and murderers will not enter the kingdom of heaven. Hate is not consistent with Christianity and one who hates is deserving of hell. When you have hateful thoughts, quickly grab them, throw them to the ground, kill them, confess to God and thank God that through the blood of Christ you have forgiveness and can enter heaven, even though you are a wretched sinner and daily prove that to be the case.
I'll stop the sermonette now. :)
But it is okay and in fact, probably necessary for an aspie's spouse to not give a damn what her aspie spouse thinks of her. Because if she is needing his appreciation, admiration, adoration, consideration, she ain't gonna get it.
She must learn to absolutely totally not care at all what he is thinking, or as is more often the case, what he is NOT thinking, about her.
Love God, and live for His glory. Seek His pleasure and work unto His glory and honor. Your aspie spouse will benefit from your living for God. And so will you.
Need people less, love people more. Fight against the "fear of man." Stop "people-pleasing." Stop thinking or caring what anyone (even your spouse) is thinking or not thinking about you. Just stop.
When you are tempted to dwell on others' good opinion or thoughts of you, say to yourself "I just don't give a damn."
And then look upward in serving and loving God. And look outward so that you can see the needs around you and strive to love others more.
Those are the only things in life Christians should really give a damn about anyway.
It's not okay to not give a damn about another human being as a human being. It's not okay to wish he would go skydiving without a parachute. That's not okay. Jesus says hate is the same as murder and murderers will not enter the kingdom of heaven. Hate is not consistent with Christianity and one who hates is deserving of hell. When you have hateful thoughts, quickly grab them, throw them to the ground, kill them, confess to God and thank God that through the blood of Christ you have forgiveness and can enter heaven, even though you are a wretched sinner and daily prove that to be the case.
I'll stop the sermonette now. :)
But it is okay and in fact, probably necessary for an aspie's spouse to not give a damn what her aspie spouse thinks of her. Because if she is needing his appreciation, admiration, adoration, consideration, she ain't gonna get it.
She must learn to absolutely totally not care at all what he is thinking, or as is more often the case, what he is NOT thinking, about her.
Love God, and live for His glory. Seek His pleasure and work unto His glory and honor. Your aspie spouse will benefit from your living for God. And so will you.
Need people less, love people more. Fight against the "fear of man." Stop "people-pleasing." Stop thinking or caring what anyone (even your spouse) is thinking or not thinking about you. Just stop.
When you are tempted to dwell on others' good opinion or thoughts of you, say to yourself "I just don't give a damn."
And then look upward in serving and loving God. And look outward so that you can see the needs around you and strive to love others more.
Those are the only things in life Christians should really give a damn about anyway.
The Aspie Caregiver and Chronic Illness
I keep reading comments on blogs and forums posted by aspie spouses who suffer from chronic illnesses. If there are studies that have researched this I'd like to know more.
Caregivers who don't take care of themselves can suffer physically as well as mentally and emotionally. Not resting enough, not eating well enough, not exercising...all these play a part in deterioration of health.
And then there is the lack of empathy issue when one is suffering.
"I'm tired." I say. Aspie spouse responds "But you just got up." I'm tired mentally, physically, emotionally, and spiritually! Just because I am standing and walking around and YOU CANNOT PHYSICALLY SEE MY TIREDNESS doesn't mean I am not tired!
My child says "my head and throat hurt so bad!" Aspie father says "I think you're fine." Just because he is walking around and not vomiting doesn't mean he is not sick!
And so we learn, sad as this is, pathetic as this is, we learn that in order for him to recognize that we are not well enough to do work around the house/go to school/whatever he is requiring of us, we must not get out of bed. We must be sure to LOOK physically sick or else we "most certainly are not sick."
And so we learn to stay in bed, exaggerating the look of our illness in order to get the most miniscule hint of understanding that we are not feeling well. We do this so too much won't be demanded of our weakened systems. And then we aren't getting the exercise we need and we are not eating well enough and are not taking care of ourselves in any other way. It's self-preservation that barely preserves.
And chronic illness may be common for those who live with aspies.
You don't say.
Caregivers who don't take care of themselves can suffer physically as well as mentally and emotionally. Not resting enough, not eating well enough, not exercising...all these play a part in deterioration of health.
And then there is the lack of empathy issue when one is suffering.
"I'm tired." I say. Aspie spouse responds "But you just got up." I'm tired mentally, physically, emotionally, and spiritually! Just because I am standing and walking around and YOU CANNOT PHYSICALLY SEE MY TIREDNESS doesn't mean I am not tired!
My child says "my head and throat hurt so bad!" Aspie father says "I think you're fine." Just because he is walking around and not vomiting doesn't mean he is not sick!
And so we learn, sad as this is, pathetic as this is, we learn that in order for him to recognize that we are not well enough to do work around the house/go to school/whatever he is requiring of us, we must not get out of bed. We must be sure to LOOK physically sick or else we "most certainly are not sick."
And so we learn to stay in bed, exaggerating the look of our illness in order to get the most miniscule hint of understanding that we are not feeling well. We do this so too much won't be demanded of our weakened systems. And then we aren't getting the exercise we need and we are not eating well enough and are not taking care of ourselves in any other way. It's self-preservation that barely preserves.
And chronic illness may be common for those who live with aspies.
You don't say.
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. :(
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. :(
Thursday, July 7, 2011
Breathe Deeply
One of the workshops I attended this year at a large autism conference was "Caring for the Caregiver." It was an accepted fact that parents of autistic children are drained, much as any caregiver of any disabled or handicapped person is. Such folks are in a role with high demands placed on them and are in need of encouragement and a respite. But hear an NT spouse use the word 'disabled' in reference to her aspie husband and more often than not she gets attacked--not encouraged.
An aspie spouse is an aspie child who has grown up. And just as an aspie's mother is his caregiver when he is young, an aspie's spouse is oftentimes in the role of caregiver in their marriage. And she (or he) gets drained.
But currently there are very few (if any) workshops given specific to her filling that particular role. So it's important to allow yourself to call it what it is and seek the kind of support any other caregiver of a disabled person would need.
The most important thing I learned from the workshop was that I must BREATHE DEEPLY. Literally. The medical doctor giving the lecture taught the following: "Fill your abdomen with a deep breath as you count to three. Then let it out slowly as you count to six." This really helps body and mind and soul to relax.
Remember the instructions given on an airplane in case of an emergency:
"Put on your own oxygen mask first." Only then can you properly care for those who need so much from you.
Sometimes life feels like One Big Emergency in an NT/AS relationship, doesn't it.
An aspie spouse is an aspie child who has grown up. And just as an aspie's mother is his caregiver when he is young, an aspie's spouse is oftentimes in the role of caregiver in their marriage. And she (or he) gets drained.
But currently there are very few (if any) workshops given specific to her filling that particular role. So it's important to allow yourself to call it what it is and seek the kind of support any other caregiver of a disabled person would need.
The most important thing I learned from the workshop was that I must BREATHE DEEPLY. Literally. The medical doctor giving the lecture taught the following: "Fill your abdomen with a deep breath as you count to three. Then let it out slowly as you count to six." This really helps body and mind and soul to relax.
Remember the instructions given on an airplane in case of an emergency:
"Put on your own oxygen mask first." Only then can you properly care for those who need so much from you.
Sometimes life feels like One Big Emergency in an NT/AS relationship, doesn't it.
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