What Do I Do Now???

In my last few blogs  I have been recounting the events that have happened to Mom and I as we prepared to put her into a nursing home.  It has been a very difficult time emotionally for both Mom and I but I was not prepared for a trial of sorts that happened to me parallel to all of what was going on in our lives together.

I went right from retiring from working in the school system for 33 years to looking after Mom in my home.  This was basically a full time job although I did manage to work some shifts at the public library as extra income.  I never really knew what it was like to fully retire.  I took very little time for myself except to watch the news on TV in a zombie state when I was too tired to do anything else.  I read some but the stress got in the way of being able to read much except flipping through a magazine.  I went out with friends, usually to Timmy’s for a tea for an hour usually while Mom was sleeping.  My love of crafting and working on my greeting card business fell by the wayside.  Keeping everything in order in the house and looking after the many needs of Mom took up most of my time.

So….. when Mom went into care I was for the first time faced with the gnawing questions, ” What do I do now?”  “How do I spend this extra time I have on my hands?”  “Where do I want to put my energies?”  “What do a really want to do with the rest of my life?”

And the big problem was that I couldn’t answer them.  I had no idea.  I had the strange feeling that I was totally floating through life, entirely disconnected from everything.  I have felt this in bits and pieces throughout my life but NEVER to this degree.  It was a horrible feeling that left me terribly anxious and fearing for my future.  Mom had been in my every waking moment 24/7.  All my routines were centred around her.  Suddenly these routines were gone.  I did not have to make her breakfast.  I did not have to get her pills ready or give her insulin, or get her ready for bed.  Suddenly I had nothing to do that made sense to me.  My whole life was totally out of kilter, so much so that I was totally lost and floating in a netherland.  For someone with autism,  this was a crisis of monumental proportions.  I started questioning my worth on this earth and what my purpose was – questions too big to attend to while going through a crisis.  I was still dealing with Mom’s situation everyday and struggling to bring stability to her life while my own was spiraling out of control.

I have heard since that other caregivers go through similar scenarios when their loved one whom they have cared for a long time goes into long term care.  So I was not alone in this struggle.  It was comforting to know that others went through somewhat similar trials.  I knew that the important thing was to forget about the existential questions of what I was going to do with the rest of my life and what am I here for and focus instead on developing some regular routines for myself.  Routines that would ground me and surround me with familiarity and comfort.  I started saying to myself even when I took my pills, or brushed my teeth that these were MY routines, MY life now.  I even started developing a couple of brand new routines that I could call my very own.  I would make my first cup of tea in the morning and get back into bed and read my bible for a few minutes.  Never mind that I often fell asleep!!  It wasn’t that the bible was boring – far from it.  It was that for a few minutes I was allowing myself to relax, and let my anxieties rest in the words of my heavenly Father.

I then started to try a few new things like going out to my friend’s farm and visiting with them and all the animals.  I took my camera and lost myself in the joy of taking pictures.  I started to fix up Mom’s two rooms she had in my home.  The decorating bug had hit me and I started having fun planning what I was going to do and doing some of it.  In the middle of this though, was having to pack up all mom’s stuff and storing it.  It was a hard exercise but a necessary one.  I even took a knitting course on knitting mittens.  This has been something that has been on my bucket list for many years.  Slowly, slowly, I feel myself gaining inner strength again.  I feel I have enough routine in my life that I am not floating aimlessly through space.  I’m still working on this.  It’s a whole new world out there to choose what I want in my life and what I can do without.  And of course I still have Mom to care for even though she is not at my home now.  I still go visit her pretty near every day which works out to about a round trip of 4 hours out of my day.  Then I still have her banking, her mail, her appointments etc etc.  It is still a full time job but I can relax a bit knowing she is in a place getting good care. It’s taken 5 months to get this far.  This is an evolving process that does not move quickly.  The speed of a snail is how I look at it.  But I’ll get to somewhere eventually.  The somewhere for me.

And what about those existential questions?  What AM I going to do with the rest of my life?  Well, God promises he has good plans for me and if I ask him he will direct my steps.  I don’t know where the next few years will take me.  It is definitely an adventure I am on.  Adventures have ups and downs, twists and turns and things known and unknown.  We’ll see.  I’ve always wondered about skydiving!  Then I’d really be floating in midair!  But only briefly before I had my feet planted both firmly on the ground again.  Things are percolating in my brain,  creative things, doing my speaking for autism or mental health again, volunteering, and most of all writing a book which I desperately want to do.  So yes, we’ll see.


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