Stepping Back

When someone is sick in our society, we do everything in our power to make it better.  Our survival instinct is very strong and our whole health care system is set up to “cure” the sick.  I hurt my back a couple of days ago.  All I wanted to do was to make the pain go away, to be back to full mobility again, to do everything I could including icing, heat, exercises, rest, visiting the Emergency department, medication anything, ANYTHING…. to make it go away.

Looking after someone who is in palliative care is like doing a total 360 degree turn in thinking.  You literally have to rethink everything you believed about health and getting well.  Instead of fighting tooth and nail and forging ahead like a bull with it’s horns ready to fight, fight, fight….  palliative care requires us to step back.  To take off the boxing gloves and don gloves of the softest cashmere to caress and comfort instead of fight.

To my autistic brain this doesn’t make sense.  It’s not logical.  When you love someone you must do everything in your power to keep them, to preserve them.  To me it seems like giving up.  I’ve spent my whole life having to fight to keep going, to survive that to suddenly step back and just let nature take it’s course is as foreign as being on the planet Mars.

I have to admit I am having a real hard time with this.  I have had several conversations with the palliative care nurse about her blood sugars or her not exercising or not drinking enough water.  She has to each time gently remind me that this is not about these things any more.  This is about keeping her comfortable, and letting her make her own choices about how she wants things to go.  I listen but in my head I cry out NO, she has to do these things.  I can control what she eats, I can control whether she does her exercises.  You are telling an autistic she has to let go of all control.  Stepping back is a huge NO NO.  An impossibility.  Not logical.

How do you let go of someone you LOVE?  I know, I know, I have heard the saying about if you love something you let it go and something about it will come back to you BUT… Mom is not going to come back.  She will be GONE.  I want to cling to her, hold her so tight and NEVER let go.

Stepping back is like turning your back on all that you care about.  I feel like I am standing high in the air on the very edge of a diving board.  I step back and I spiral down and crash into the water sinking deeper and deeper.  I can’t breathe and I struggle to find my way in a strange watery world to a world that makes sense to me and I can breathe.  But I can’t make it to the surface.  I’m drowning, drowning in sorrow and loss.

Stepping back is the new reality for me now.  I have no choice.  The only choice there is, is to keep Mom comfortable and happy.  So can I somehow, turn my fight into fighting to do this in the very best way possible for her.  I think that will be my new goal.  That is the only way I can see to go through this and not drown in the process.  My mantra will be “comfortable and happy”.  I have to let go of the old way of fighting and embrace this new way of fighting for my Mom.  The only thing that’s different is that there is no winner.  And the grief goes on……

Mom’s Theme “I’ll Do It My Way!”

Image result for frank sinatra quotes my way

Mom’s name could very well be Francine Sinatra, the female equivalent to Frank Sinatra.  I’m sure her new outlook on life at this time in her life is “I’ll do it MY way!”.  She is exasperating sometimes.  I never realized that Mom was so stubborn.  Now I know where I get it from because I am about as stubborn as they come.  I guess as I was growing up Mom was kinda the boss of the family so she got to do what she wanted but now as she is a frail elderly woman at a time in her life when most decisions are taken out of her hands and she has little control over her deteriorating body she has resorted to resisting anything and everything that is asked of her even if it is for her own good.

Mom is like a rebellious kid and all I can do is look on with exasperation and let her do her thing.  It’s the last bit of dignity she has.

So what do I mean by her being rebellious?   Well,  she’s supposed to drink water for her diabetes.   She won’t.  She’s supposed to keep her feet up to help with the swelling.  She won’t.  She’s supposed to do her exercises.  She won’t most of the time.  She’s supposed to have a shower twice a week.  She laments, complains and you just about have to take her kicking and screaming to her shower ( not literally),  She’s supposed to use her aid to help her breathing.  She won’t.  She ‘s supposed to work at coughing up the accumulating phlegm she has.  She won’t.   She has let me know loud and clear that she WON’T wear compression stockings if she needs them.  She’s supposed to go to the bathroom more often than she does.  She won’t.  I’m surprised she hasn’t told me that she WON’T go to her own funeral! ( sorry, just had to put that in)

So what does one do with a rebellious 89 year old child??  Well,  I used to harp at her to no avail.  So my next step is to write out a list of things she is supposed to do and tape it close by her then leave her to her own devices.  No more harping, no reminders.  She’s got the list.

I understand her need to do this but unfortunately the only person she is hurting is herself.  She asked me last night why she was getting swelling in her legs!!  I have to bite my tongue and sweetly answer her.  She gets lectures from her doctor, the nurses that come, the PSW’s that come.  She doesn’t need to have lectures from her own daughter.  I need to be on her side not against her.

It’s so hard watching her deteriorate from her own stubborness  but I need to give her some control in her life.  With her probably being on the spectrum as I am, I know the need to have control over our circumstances.  It makes life more secure, more safe.  If this is how Mom needs to be to get through this very difficult thing called dying then I need to step back and let her be despite the fact that every ounce of me wants to have her keep going on as long as possible.  I don’t want to lose her.  It’s a terrible predicament to be in.  It brings anguish to my soul and tears to my eyes.  Sometimes I have to leave her, go to the basement and just cry and cry some more.

The journey continues and I have to let her do it “HER WAY!”

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.