Tonight as I sit here typing, a winter storm is raging outside my door. Schools were closed and the library where I worked closed early. I came home, got into my jammies and slid beneath the cozy covers of my bed only to face another storm, the storm of my life.
I have not written a new post since November 21, 2018. I have tried day after day to write all that was happening but I could not find the strength to put my words down. It’s like if I didn’t say anything maybe it wasn’t true. I could avoid reality.
Well, the reality is that now my precious Mom is in a nursing home. My worst nightmare had come true. I was so sure she would stay with me till she passed on to Heaven. I was going to look after her in my home, protect her and comfort her and give her the best last days anyone could have. Until I fell apart from the stress and trying to manage her deteriorating condition.
Mom moved into the nursing home Nov. 13, 2018. Tomorrow marks 3 months in the home. It has been 3 months of one of the worst storms of my life. Granted, she is getting excellent care, the staff are stellar, Mom is doing not too badly and in reality I could relax with knowing she is in a safe place with good care.
Unfortunately, my autism has gotten in the way of seeing all this in a positive light. To start off, I had a terrible time with rules. What I mean is that staff didn’t always follow the rules as I saw them. What was in her care plan didn’t always happen and different staff were not aware of her care plan details which drove me crazy. I figured if it was in her care plan, it should be followed by every staff to the tee. Reality in a large facility with many different residents, and many different staff is that things get missed, forgotten, and I became angry, paranoid and suspicious of all staff. This attitude unfortunately was picked up by my Mom who began to hate the place and have her own anger. Thank goodness, I was able to realize how toxic I had become not only to myself but to my Mom. I gritted my teeth and decided that I would not say another bad word about staff or the place. Nothing but positive comments to Mom about her care and slowly she came around to appreciate her being in this place. I still have trouble like yesterday when they lost her roho pillow costing over 300.00 but I am trying to be positive and supportive to Mom and staff.
All this comes down to control. I have lost control. WHen mom was at home with me, I could control all aspects of her care. Even though I was stressed, I had control. And control is central to someone with autism. We thrive on being able to control our lives. Now with Mom in a nursing home, I have suddenly lost a significant amount of control of what happens with Mom. Mom is dealing with this too. She can no longer take a tylenol when she wants to unless she rings for the nurse. She can’t go the the bathroom unless she rings for someone to help her. This loss of her independence has been a major issue in her getting used to living in a nursing home. She feels powerless and insignificant.
To try to help control as much as I possibly can, I go pretty near every day to see Mom. I travel on the bus and walk a short few blocks to get to her place. By going every day I can keep an eye on things and hopefully solve any problem that comes up. Mom loves me to come. I am who she has left in the world. My presence soothes her and helps her know she is still looked after. Unfortunately, the storm in my life has gotten more severe. Going every day has exhausted me to the point that I have been sick since Christmas with various symptoms that come and go leaving me feeling washed out, depressed and feeling hopeless. I am suspecting that I have autoimmune disease. My joints are inflammed and I am in constant pain. I am reacting to environmental susbstances that never bothered me before and I have started to react to corn and soy in my diet as well as coconut products and sugar. My body is screaming out in protest to all the stress it is under. The storm swirls around me leaving me debilitated and fighting to wade through the effects. I am scared. I am very scared. What if I get so bad I can’t work? How will I support myself?
I have been told to cut back on the amount of time I see Mom. This terrifies me. If I don’t go see her and give her a kiss and a hug and tell her I love her I am terrified she will die that night and I will regret for the rest of my life not going that evening. So I continue to go almost every day and I can hardly keep awake when I am there. I bring tea, soothing tea to sip on as we talk or watch TV. I forget that I have not had supper and it will be too late to eat properly when I get home. I often forget to eat breakfast and lunch as well as I am trying to get so many things done around the house. I still have all Mom ‘s belongings that have to be packed up and stored. I will not get rid of them till she passes. I promised her that. I’m trying to desperately incorporate new routines into my life after losing all my routines that focused on Mom when she was at home with me. It’s like trying to crawl out of a black hole. What new routines do I want in my life as I am now by myself? What are my priorities ( besides Mom who is still my number 1 priority). The storm swirls around me as I try to find my way through the blinding snow into a new world. I am lost, shivering, and overwhelmed with the ferociousness of the storm. It’s sucking the life out of me. Literally. I am sick, and I don’t know how to find my way out of this. And the storm is not going to let up anytime soon. In fact it may get worse. I have always been a survivor but at what cost? I want release from the storm. I want it to stop. I want calmness, and peace. I want to sun to come out again. I want to see the sparkle of the snow in the sun and know the worst is over. But the grey skies continue. There is no sun. I am stuck in the middle of the storm. I don’t know how to find my way out. I just keep plodding through the deep snow getting more and more exhausted and more and more and more sick. Where will it end?