Guilt to Gratitude: The Happy Wanderer

Several weeks ago I came home from church to find Mom sitting in her easy chair with blood all over her and all over the carpet. She had fallen and hit her head and hurt her back.  That moment created some sort of paradigm shift in my existence.  Where before I had felt fairly comfortable leaving her to do errands and other outings, I now felt terrified to leave her even for a few minutes.

Suddenly, my world had caved in upon itself.  I was no longer free to come and go as I pleased.  This would be very difficult for anyone but for me with autism it was doubly difficult.  I am a wanderer.  I spend a lot of time wandering around town, whether it is to do groceries, to visit my favourite stores, to meet with friends at Tim Horton’s, to just go walking.  Wandering is a huge stress releaser for me.  As a young adult years ago when I was having severe problems,  I would find myself wandering in the middle of the night in my pyjamas around my neighbourhood – sometimes even in the middle of winter.  I would often run when things got tough.  I would run when things got scary.  I would run when I was overwhelmed.

Suddenly I was a prisoner in my own home.  Trying to set up respite was difficult and I could find noone to come in on the weekend.  That meant not going to church and being in the house for 2 whole days.  Just the thoughts of it made me squirreley.  The first weekend I spent at home I became deeply depressed and then I came down with very sore blisters in my mouth – surely a sign of stress.  After 2 weeks of this entrapment, I decided I could no longer do this as it was going to be the end of me.  Part of the problem was that when Mom fell, she declined to phone me ( I ALWAYS have my cell phone with me when I go out) and she didn’t push her lifeline button.  These were two safety nets Mom and I had set up to make sure she would be safe when I went out.  She had refused to use either one of them when she fell.  How could I trust her?  I had a long talk with her about the importance of using the safety nets we had set up and I told her that if she did not use them I could not leave her.  Now, she was also feeling trapped.  She did not like me hovering around her and particularly did not like being “babysat” as she put it.  After much discussion, we decided that we would go back to the way we had done things before she fell.  She would phone or push her button and I would leave her on her own for short periods of time.

Only there was one thing I did not count on – GUILT.   If I tried to leave her for a short period I felt an overwhelming sense of guilt that if she fell or something else happened it would be my fault.  I had to be aware of how she was at all times.  I soon realized that this guilt was partially my feeling that I had to have everything under control.  I could not walk in on a scene like I had that day after church.  Controlling every detail would prevent the extreme fear I had experienced that day or so I thought.  But trying to control every detail was impossible for one thing and for another it was not the way God wanted me to run my life.  By trying to control everything I was removing God from the equation of my life and that could equal disaster.  I wanted God back in His rightful spot – at the centre of my life with Him in first place, not my act of controlling.

I had to fight the guilt and control.  So I decided to take a trip to my favourite place – Value Village and NOT get someone to stay with Mom.  She would be on her own.  I stayed away 3 hours and they were the most anxious 3 hours I have experienced in years.  I almost passed out several times from the extreme anxiety of leaving Mom.  But I did it!!  And Mom was no worse for the wear.    Over the last week I have ventured out on my own several times leaving Mom alone.  Each time it gets a little easier but I have to commit her to God’s care and ask God to help me deal with my anxiety.

So I am free to wander again.  I am so full of gratitude for this privilege.  And that is how I look at it now.  It is indeed a privilege that at any time could be taken away again.  To feel like a caged animal in your own home is a frightening experience and not one I want to repeat.  I still feel trapped in the sense that I am bound to Mom for her care and well-being but I will deal with that as best I can.  That is just my life right now.  As long as I can wander I can experience some relief from the restraints that are on me at this time in my life.  And wander I will…..

Helpless and hating it…

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.

Mom’s Wish – My Loss

Today was Dad’s birthday. I wonder if they have balloons in Heaven?  He would have been 89.  He would have caught up to Mom who was 89 in April.  Mom was the first to mention it this morning.  I sang a lively rendition of “Happy Birthday” to Dad much to Mom’s delight. ( I am know for my serenading people on their birthday with various renditions of “Happy Birthday” including the Hallelujah chorus rendition!)

I have been getting more and more worried about Mom.  She looks so sad and dejected.  She sits in her chair with her eyes closed or just stares off into space.  She is not having good nights, often up with trouble breathing and not feeling well.  I have been going to bed myself wondering if she will be awake in the morning.

Tonight was an especially hard time that has catapulted me once again into hyper-vigilance with hyper-anxiety.  I asked a simple question I have asked her a million times.  ” Is there anything you would like, Mom?”  I’m usually referring to some food she might like.  This time though her answer took me by surprise.  She said, ” I want to go home.”  ( home meaning Heaven).  My heart quickened in my chest and my stomach felt like I had just been punched.  I replied, “I know you do Mom.  Although I want you with me forever, I know you want to go home.  I can’t be selfish here.  It hurts me to see you suffer and be miserable.”

What transpired next was a half-hour conversation where she asked me a number of questions like how much was left to pay on my mortgage,  what would I do for income that I would not be getting from her monthly stipend etc etc.  I got the feeling she was wanting to know I was going to be alright without her.  I assured her I was going to be alright.  I had a few close friends, a church family that I felt closer than I ever had before, I was going to be an Aunti to a new little adopted girl who I adored by my best friend’s daughter, I had my brother, my “belle-soeur” ( my sister in law) and my wonderful niece and nephew and my cats.   I told her I was trusting in God to look after me and provide all that I needed.  ( she does not know I have autism and when I said this I knew I was trusting God for a lot more than what she might think.  I was basically going to be alone.  I had already a hard time coping in the world.  I knew trusting God was going to be key for me to my being able to keep going in this world as someone with autism)  I then showed Mom the ring I had bought but had not shown her yet – a silver ring with 2 hearts and an infinity symbol band on the ring – symbolizing mom and me being together forever.  She was quite interested although I don’t think she grasped the significance the ring had for me.  I am very sentimental and I have many, many things that have special meaning to me.  Things in my life are given meaning I think to help ground me and help to keep real the parts of my life which are no longer tangible.  Memories are cemented in my mind by a thing that I attach a meaning to.  Unfortunately, it means I have a lot of things in my life.  Sometimes people don’t understand my attraction to things of all sorts.  They help glue all the pieces and memories of my life together.

So back to our conversation… We continued talking for a while and then just sat quietly with each other, the cats joining us in the bedroom.  We were all together my little family.  All I could think about was what was going to happen?  Was Mom going to die tonight?  I don’t know.  She may surprise everyone and live another several years or she indeed may go tonight.  I just know that these episodes put me in such a state of hyper-vigilance for days until I think the danger is over and things resume a calmer state.  This wreaks havoc on my whole system.  Everything goes haywire – my eating, my sleeping, my ability to concentrate, to look after the house and all the other things I have to tend to.  It exhausts my already exhausted frame.  I feel shell-shocked.  I feel physically sick.  I cry.  So now as I am writing this I wonder – will I be able to get to sleep tonight?  I don’t know but will probably need to sleep part of the night in my easy chair wrapped in a blanket, my knees tucked up under my chin.

Mom’s wish.  A simple wish to go home.  We all wish to go home when we are away.  I can’t deny her that.  But Mom’s wish come true means my loss.  Am I selfish? Yes, indeed, at times I am.  I want her here with me – always!  My loss will be overwhelming, immense, unfathomable, almost unthinkable.  But my loss will come just the same.  There is no control here, no say.  Just loss.

As I am typing here, Mom is asleep in her room.  I just heard her cry out “Lorne!”  That’s Dad’s name.  Oh, how she misses him.  She needs to go home.  I must say goodbye soon.  I must loosen the grip I have on her life and let her go.  And accept the loss.  Wishes are more important than losses.  Wishes are often the result of losses.  I wonder what wish will come forth from my loss.  Tonight ( or in the days ahead) a wish and a loss rest in the heart of God. A God with a heart big enough to make any wish come true and any loss to be cut down to a size that is not overwhelming or unbearable by His great great LOVE.