One word we so often associate with those with autism is the word CONTROL. We want and NEED control in our lives. We need sameness and order, predictability and logic. So what happens when those things disappear out of the picture and get replaced with a terrible sense of “out of control”?
That is where I am right now. I love the somewhat whimsical word discombobulated to describe how I feel when my world is mixed up and confusing but my world right now is beyond discombobulated. I am what some have quoted down through the ages as in the “dark night of the soul”.
Through circumstances that are happening in my life right now I feel totally helpless. I couldn’t think of a worse word to describe how I so utterly feel.
What do you do when the person you love the most in the world is dying and you can do nothing about it? Not only that but every day, week in and week out, you watch her deteriorate. You listen to her laments about wanting to die. You see the pained look in her eyes. You see her struggle to make her body do what it just can’t do any more. You see her fight tooth and nail what is happening to her and understand that she knows she is losing the battle. Getting old is not pretty. And I don’t just mean physically. Mom complains about the wrinkles on her skin and the ugly brown spots on her arms and hands as she calls them. She complains she can’t hear and she can’t see. She gets so frustrated when she tries to work on the computer and her hand can’t control the mouse like she wants and all kinds of strange things happen as random things are pressed. Then I have to come to the rescue and bring every thing back into order again. If only I could do that as easily with her life as I do on the computer. And that’s the problem right there. I can’t do anything about any of this. Not one darn thing.
I think the word helpless and all that it entails is one of the most saddest words in the English language. The feelings of helplessness knocks the wind out of you and brings you to your knees. Your heart aches like it has never ached before. Watching someone struggle day after day, knowing someone is miserable and depressed, knowing someone feels useless and forgotten in this world of do, do. do… What can you do when you are 89 and can’t hardly see, can’t hardly hear, and can’t hardly get to the bathroom, and can’t do pretty much anything.
I’m struggling with all this. I keep thinking there must be something I can do to make things better. After all, I have always been the family member that made everyone happy, and solved their problems. What if there is no solution? Nothing except WAIT… Wait for life to play out the way it is to go. And how long do I wait?? A week, a month, a year, 3 years???
Misery breeds misery. And as I deal with the misery my Mom feels it wraps it’s twisted fingers around my life as well. I am miserable – so miserable I am almost immobile. I sit and rock in my chair with my blanket wrapped around me to shield me from the world I am facing. It’s all I can do these days. I can’t handle my life that is so out of control. I can’t handle that there is no predictability. I can’t handle that sameness doesn’t exist anymore.
Being a caretaker for my mother wasn’t supposed to be this difficult but the reality is that I am not the only one going through this. Unnamed, unnoticed households across this city, this province and this country are going through the same grief and helplessness. We privately go about our job of taking care of our loved ones and often deal privately with the pain and struggle it entails. That is partly why I am writing this blog. To bring a voice to those of us who chose or are forced into caring for the elderly members of our family. And because I am autistic, the issues can be much more intense and debilitating than for the one without autism. Many of us have been diagnosed late in life. I was not diagnosed till I was 50. My Mom does not know I have autism and does not know that she is likely on the spectrum herself. In my particular case, it is best that way. But it brings with it a host of problems and a lot of suffering in silence.
I have a faith. My faith keeps me going day after day. I have the assurance that my God will never leave me nor forsake me. I have the assurance that I don’t have to be a slave to fear because I am a child of God. And I won’t be totally alone when Mom goes although I know it is going to feel like it for a while. Right now, being helpless puts a whole new spin on my faith. Being helpless, means I have to give up that need for control and trust in the God who holds all things in his hand. It’s a tough lesson, especially for an autistic. But I know without a doubt, with my whole being that trusting in God to look after the helplessness is the only way out of this “dark night of the soul”. As I talked about in one of my other blogs, “life begins at the end of your comfort zone”. And so tomorrow I will wake up and life will begin once again and I will survive this.