I’m not sure where the last month has gone. It has been a blur of doctors, nurses, tests, sitting for hours at Mom’s bedside, nightmares and deep deep weariness.
It all started with Mom’s voice going hoarse. We kidded that she had a frog in her throat that just didn’t want to leave. And leave it didn’t. It only got worse. Mom became very sick with some sort of insidious bug and for over 10 days I did not know if she would pull through. Every day I sat in her room for hours, drinking loads of tea, listening to my music, playing games on my ipad all the while keeping vigil as she mostly slept and tossed and turned, often struggling to breathe. Every once in a while she would wake up and look at me with a look that is forever etched in my heart. Her eyes bore through me as she silently pleaded, ” Please make this go away” I sat helpless not knowing what to do. At times I would sit on the bed with her and hold her and stroke her head. At her brighter moments I tried kidding with her telling her that she was Darth Vader’s mother as she had a real gravelly voice. Gradually as the days went by, she got better and better until she was basically back to her “normal” self. I finally relaxed feeling very grateful that the worst was over. Then only a few days later I got a dreaded call from the nursing home. The doctor wanted to talk to me. He said she had come down with what they thought was a urinary tract infection. Again the long vigils started although this time with the help of an early antibiotic she quickly recovered. Again I relaxed although with some reserve. I just wasn’t too sure. Every day Mom and I would phone each other and I would keep tabs on her when I was not down at her place. One morning shortly after the second health scare, I could not get through on her phone. All day I tried ( it was my day off from going down to see her). I finally phoned the nurse to check on her. The nurse reported that her phone was dead. This might seem like a minor inconvenience but Mom was using an old Doro senior’s phone put out by Roger’s which was no longer being made. Mom could not manage to dial a number. On her phone all she had to do was press the A button and she got me at home. If she pressed the B button she got my cell. It was working well until now. I went on Kijiji and found a second hand phone just like hers for sale in the city where my brother lives. A week later and he is still trying to make arrangements with the seller to pick it up. Needless to say I am very annoyed. And to make matters worse, Mom and I both did not realize how much we had come to rely on the phone to keep connected. I felt totally lost with not being able to pick up my phone and talk to her when I wanted and I could tell she was feeling it too. It scared both of us.
So add in some health issues of my own, a couple of other irritating incidents and you end up with a very stressful month.
They say it is all in how we react to things that matters and will determine our frame of mind. Well, I must say that I must be reacting very badly to all this because my frame of mind is shot right out the window. What I realized was that these were all things I had no control over. And I like to have control. Control equals safety and comfort coming from an autistic person. Having little control makes the ground like quicksand under my feet. No sure footing, no semblance of order or consistency makes me a sad puppy and a very anxious one. So anxious that to try to deal with the added stress I attempted to alleviate the stress by simplifying my life. That meant visiting Mom and trying to continue working. That’s it. No being with friends, no going to church, no shopping, no facebooking, I basically have dropped everyone from my life. I know people will do this but I think with me it has to do with the extreme exhaustion of being with people that my autism can cause. By eliminating people I hoped to eliminate the weariness and stress that was overtaking my life. My cats were my constant companions. And I must say they are very good kitties. I do not advise anyone who is a caregiver to do this. We as caregivers, more than anyone else need a network of friends, family and community people to gather round us to support us. Unfortunately, being autistic does not always make this the best thing for us at certain times.
The other thing I realized was when Mom’s phone went dead I was left to experience a little of what it might be like when mom died. I could not reach her. I could not hear her voice. I could not tell her the silly things that my cat Gus Gus was doing. I could not tell her about what I did at work or what I was doing around the house. It has scared me to no end. And it is not over yet. We still do not have a phone set up for her. I sit at home feeling somehow the cord that binds us has been severed. I know this is only a temporary sever. It will be reattached but when Mom passes away that cord will be permanently cut and I will be left all alone.
So what do I do? Do I drown in my despair or do I somehow find a new way to go on. This is the year of 2020 vision. A perfect reason to look at things with new eyes. And a new heart. In the bible in Ephesians it says,”I pray also that the eyes of your heart may be enlightened in order that you may know the HOPE to which he has called you, the riches of his glorious inheritance in the saints and his incomparably great power for us who believe.”(Eph. 1:18-19) I am sick and tired of being sick and tired. I don’t want to be afraid all the time, I don’t want to dread the day when I wake up for fear of what might happen in it. I don’t want the intense anxiety sit like a large stone in the pit of my stomach every day. I don’t want to feel like crying all the time. I don’t want to fear the future. I want that hope and the riches God has for me and to live in His power instead of my own feeble power. I want to be enlightened to a new way of being through this journey.
My life does not end when Mom’s does. And although she is in the sunset time of her life my life will go on and a new dawn, a new sunrise will proclaim it’s birth in my life. I have a chance for a new vision. God says in Isaiah 43:19 See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Sure, there are going to be very dark days ahead but I will follow Jesus into the darkness and he is the Light that will guide my way through to the other side.
Let’s face it. Caregiving is not for the faint of heart. It has the ability to take you out and knock you flat. It has the words of “victim” ready to deliver when you are down and out and feeling sorry for yourself. I don’t want to end this journey with Mom as a victim. I want to end our journey whenever that happens as a victor. That we have run the race and finished the good fight. I’m not sure what a caregiver as a victor looks like yet and i am not sure how to get there. But I am willing to give it a try. Anything to escape the life I am living now. I am looking and praying for a new vision in this 2020 year. I may need a new pair of glasses but I will get bright red ones with sparkles on them.