Autism and Caregiving – Mind Grind of the Worst Kind.


Over the past few years, especially since Mom had her heart attack and developed congestive heart failure,  I seem to be struggling more and more to a greater degree as time goes on.  I struggle with  depression, extreme tiredness, volatility, extreme sensitivity, rumination, perseverance, black and white thinking, and extreme compartmentalism as well as a host of other things.   I just seem to not be able to manage this caregiving thing and often desperately want release despite that meaning Mom will be no longer with me.

I have tried so many things to calm my life and reduce the stress I am struggling under.  I am swimming at the YMCA  four times a week.  I have a strong faith which gives me the strength I rely on to do this job.  I try to eat well, take my vitamins, get enough sleep,  spend me time, rest.  However,  the desperation just seems to be ramping up day by day.  I am afraid I will crash in a way that will not allow me to continue to daily look after mom.

So I asked myself,  what the heck is going on??  Why can’t I walk this journey one foot after the other in time to the beat of our lives and do it in a way that is healthy and less stressfulTh?  I did not have an answer so I asked my Doctor.  She laid it out plain and square.  “It is your autism”, she said.  I asked her to explain.  Here is what she revealed about having autism and being a caregiver.

On a global scale, autism can cause high anxiety and depression.  That is a known fact.  I suffer from both of these things on a good day let alone a bad day.  Any worry about Mom morphs into hyper-viligance and high anxiety.  So when I phone Mom in the morning and she says she is having a bad day with shortness of breath etc I panic big time and  start worrying is this going to be her last day?  On the contrary, if Mom reports that she is having a good day,  I relax somewhat although never completely.  (yes, I know, maybe I should not be phoning her each morning.  I am setting myself up for problems)   Depression sets in as I am too weary emotionally to do the other things in my life I need or want to do.  Depression sets in when I do not see an end to this journey. Depression sets in as I struggle to imagine what life is going to be like after Mom is gone. The anticipatory grief is a very constant travelling companion as I venture on this journey.  How will I survive without her?

On  more specific autistic traits,  I have a few which are giving me a really hard time.  One of these my doctor tells me is my inability to compartmentalize.  I don’t understand it completely but other people in my situation would be able to put Mom off to the side when other things are front and centre.  Unfortunately,  Mom is ALWAYS front and centre.  I can’t set her off to the side, I can’t let my brain rest from thinking about her.  It’s 24/7.  Hence the extreme weariness and stress.  I can’t rest literally.  I can’t take a break.  With Mom in a nursing home now, my Doctor is trying to get me to self-talk about how Mom is being looked after in a good place.  I do not need to constantly think about her.  I need to let the staff do their job to look after Mom and  I can relax or at least try to, knowing the staff will contact me if there is a problem.  I’m trying this self-talk and I add that God is looking after her too and he can do a much better job than I can.  Hey, he is the king of the Universe!

Another problem I have which aggravates everything I do is that I ruminate about everything.  I go over everything in my mind over and over and over and over – get the picture!?  This is extremely exhausting and frustrating when you can’t stop it.  Everytime I have to talk to a nurse or someone else at the nursing home I have a script I develop and repeat over and over maybe 50 or 60 times and then if I revise it that is even more repeating.  It’s like an irritating ear worm that just won’t stop.  And as I keep repeating I keep getting more and more anxious.  A vicious circle. A brain grind of the worst kind.  This doesn’t just happen with people connected with Mom – it may happen with anyone I have to say something to in my life.

And when you have Mom front and centre ALL the time, and  you are ruminating about everything in your life you start chanting to keep everything together.  I chant jingles, license plates, adds, street signs, words I hear from conversations around me.  Over and over and over.  I click my teeth together like I am chattering from the cold.  I pick at my fingers constantly.

Then with this all happening and you are so exhausted you become touchy, grouchy, and just plain miserable.  Volatility  happens in the more extreme moments.  Every little thing bowls you over like it was a giant tsunami wave.  I left a parcel for Mom the other night at the nursing home.  I did not want to go up to see her because I was sick.  The parcel got misplaced.  I was frantic and  so upset.  My emotion meter would have read ” WAY OVER THE TOP”.  The parcel was found a few hours later.  It was not the end of the world.  My whole life is “WAY OVER THE TOP” these days.  My co-workers are getting used to me having meltdowns over trivial things at the library.  Unfortunately I am not getting used to it. I am ashamed and embarrassed.   Meltdowns seem to be the norm.  I seem to be in a perpetual state of apologizing  these days for my rash words, my crying, my complaining.  My emotions are all over the map as I walk this journey.

These are a few ways my autism makes it much more difficult to be  a caregiver to my Mom.  There are several other traits which also make it hard.  All in all, this is a desperate journey I am on.

 BUT…  my loyality to my Mom,  my attention to detail in her daily care,   my focus on what needs to be done each day, my determination to see this amazing journey to it’s completion,  are just a few of the positive traits my autism has given me to indeed complete the journey I am on.

With the wonderful people I have around me, and most importantly with my faith in God,  I will get through this somehow.  I am on a parallel journey to see what I can do to use all that my autism has given me – the worst with the best to set before me a plan of strategies to lessen my stress and weariness.  My life may be a bit of a mess right now, but I have the MESS iah  who is an expert at dealing with messes.  I will daily hand over to Him my messes and trust that He will turn them into messages of love and comfort and rest for me and he will he will turn my brain grind into the BEST kind.

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