My Brain is on Auto-Pilot

As I’ve mentioned many times in my posts, care-giving is exhausting.  Add the autism into it and it is more than exhausting, it is mind-numbing.  Lately, I seemed to have entered an interesting phase in this journey I am on of looking after Mom.

I suppose you might say I have resorted to putting my brain on auto-pilot to manage day by day.  I know exactly what I have to do to look after Mom first thing in the morning, throughout the day and in the evening when getting her ready for bed.  It’s like a mathematical formula that just repeats itself day in and day out.  My mind also knows to check for what we need in groceries, what medications I need to renew, to do the laundry when the pile gets quite high, to get Mom’s glucernas when she is running low, to feed the cats, to take out the garbage and so on.  Routine, Routine, Routine….

This is all pretty normal but what’s changed is the times that I am not in routine.  I used to work on projects like making my greeting cards, tidying, sorting, doing various crafts, reading, doing my budget and so on.  Now my blank times are just that – blank.  I sit and rock, I doze, I sit and hum, I sit, I sit some more and some more…   And most of the time my mind is blank.  Like it has turned itself off.  Even doing this blog is very difficult and I am forcing myself to think to write.  I have a speech to write for later this month.  I can’t get started.  My brain is out of gas.  My tank is empty.  And there is no gas station for miles around.  I am stranded in this land of blankness.  I forget to look after myself,  I forget to shower, to brush my hair ( I think it has been 4 days since  I brushed my hair – thank goodness for winter and hats.)  I forget to eat and if I do eat, I eat junk food.  Gone is the healthy diet I was on for the past couple of years.  Sometimes I wear my clothes to bed too tired to change.  Sometimes I’m too tired to go to bed and sleep in my chair.  And then pair that with nights when I am zinging and I stay up all night.

Emotions elude me at times.  I don’t feel sad or angry or happy.  I just feel nothing.  I just move through  the day doing what I have to to keep Mom in the best of care.  I must renege a bit here.  Yes, there are times that emotions elude me but there are also times when my emotions gush out of me like mighty torrents of raging waters and I am unable to control them. And it usually over something very trivial.  The other day I  wrote a letter to someone and I had spent a month trying to figure out what to say and just how to say it.  I got it written and was happy with it and saved it and closed my laptop.  Later I went to print it off and I couldn’t find it anywhere.  It was just gone!  You would have thought the world was about to end.  I cried, I wailed, I screamed.  I even felt I was so upset that I would need to go into the hospital and told my doctor so.  But I don’t have the luxury of copping out.  Who would look after Mom??  I have to go on no matter what.  This story does have a happy ending because when I calmed down enough I got myself together and took my laptop to a computer place and for $11.56 I was able to retrieve my letter.  I told the technician that if I had a million dollars I would give it all to him.  I was that happy.

I guess when you don’t have the luxury of copping out and you are in need of a break your mind just tells you it’s going on break whether you like it or not.  And I believe that is exactly what my mind has done.  It’s taking it’s own holiday without me.  How rude!   And it’s just hit the auto-pilot button so I can continue doing what I have been doing.

It’s not that bad really.  I’m not in pain, I’m not suffering much at all.  Being in a blank state is actually quite nice.  You just don’t get much done except the bare necessities.  But maybe that is just where I have to be right now until my brain decides it has had enough of a holiday and wants to come home.

Meanwhile, I’ll just continue to sit and veg and sit and rock and sit and hum and sit and sleep and best of all sit and pet my cats when they take advantage of me being in one place for a while.  Nothing better than petting a cat for your brain on a holiday.

So life is kind of on hold right now.  I don’t go out much.  I don’t do much.  I don’t have the energy to see my friends.  I am not able to read much.  I’m in limbo, in this weird state of mind and I don’t know how long it will last.  I guess I just go with it.  As long as I can take care of Mom I don’t care about me.  I have survived much worse.  I will survive this.

Anticipatory Grief Again – Really!?!

Every day as I look after Mom I live in a state of limbo between death and life.  I know Mom is going to die sometime in the future – probably sooner than later.  I watch her slowly deteriorate as if she were a slowly deflating helium balloon.  But then there is always the possibility that a proverbial pin will puncture the balloon in one single deadly instant.  And when will this happen, and how long will it go on? Questions I cannot answer no matter how much I wish I could.

I am experiencing anticipatory grief – that feeling of loss even before a death occurs.  I sometimes feel it must almost be as bad as the actual grief at the time of death.  It certainly consumes me like it is eating me from the inside out.  I wrestle everyday with thoughts of fear, great sadness, worry and I am in a constant state of suspense.  I am in the middle of a living horror movie knowing  it will end but not knowing anything else about the details.

I am on constant alert.  I call it being “hyper -vigilant”.  The constant alert goes to HYPER ALERT when something happens to Mom to indicate there is a change for the worse.  This happened this week.  Wednesday, our caregiver came downstairs to tell me that Mom was in a confused state, unsure of what was happening.  She was also needing her nitro spray often and hours later Mom confessed she had been having pain down her left arm.  I struggled to know what to do about going to work.  Should I go or stay home and watch Mom?  Mom assured me she wanted me to go to work so reluctantly I headed off with phone around my neck in case she phoned.  I silently worked away at the library putting books away  the tears close at hand.  I wanted to run home and hug Mom and make sure nothing happened to her.  Yet, when I left at the end of my shift I was afraid to go home – afraid of what I might find.  Constant limbo, constant suspense, constant alert.

Mom has been with me for over 3 years now.  3 years of living in limbo.  Three years of not knowing when or how.  It wears you down and after a session of being in HYPER ALERT I just grind to a halt.  Managing what I need to do for Mom is all that gets done.  The rest of the time I am in my easy chair rocking, rocking….  trying to get back some semblance of normalcy, a daily simple rhythm again.  It may take days to get to this point.  And then in the facade of normalcy I wait…  wait on tenderhooks for the moment something happens again to send me hurtling back into HYPER ALERT.

Being autistic does not make this any easier.  In fact, it makes this life much more difficult.  We like order, we like sameness, we like predictability.  I live with none of this and it wreaks havoc on my body and mind.  When I worked in the school system,  I worked with one young autistic boy who used visual aids extensively.  He had pic symbols across his desk to outline his daily routine.  Preciseness, predictability and knowing what was going to happen next determined his whole emotional well-being.  I made sure his symbols accurately detailed his day, I gave him 5 min. warnings when things would shift to the  next symbol.  I did all the things I needed to do to keep this boy on an even keel.  I even had a magic card – the CHANGE card.  I would quickly switch it in if there was an unexpected change in the day and then talk about the change with him.  Most times the change went smoothly with this magic card.

I WANT THAT MAGIC CARD!   I want someone to hand me the CHANGE card when something is going to change in my day.  But I don’t have that magic card and neither does anyone else for me.  There are no warnings, no alerts across the TV screen, just this sickening sense all the time that my whole life can change at any moment and I can’t do a thing about it.

Grief – we think of grief when someone dies.  We don’t think of grief before someone dies.  But it is just as real, just as potent, just as relentless. It puts your life on total hold.  It’s called anticipatory grief.   Harriet Hodgson wrote an article entitled, “Why is anticipatory grief so powerful?”  You can probably google it but it was on http://thecaregiverspace.org.  I leave you with a quote she says, “If sudden death hits like an explosion, knocking you flat, then a slow decline arrives like a glacier, massive, unstoppable, grinding you down.”

I am out of strength.  I am spent totally.  But I have a God who gives me the strength that I do not possess to keep going day after day for as long as necessary.  His power is made perfect in my weakness.  And as long as I have my beloved, precious Mom with me I know my God will carry me through what I have to go through.  He does not promise to dispel the despair we suffer but he does promise to walk through it with us.  He is my ENOUGH when there is no answer, when there is no predictability and when I want to quit.

Time – precious thing that it is, keeps ticking.  The angel in my photo at the top is holding onto a clock.  Only God knows the time Mom has here on earth.  We watch the clock sometimes wishing it were over and at the same time wanting time to go on forever.  That’s anticipatory grief.  There’s no” time timer” ( a special clock to use with autistic kids)  here to see how much time we have left.  Each moment with Mom is a precious moment.  Today I gave her a bouquet of dandelions.  Their bright yellow bobbing heads the ultimate mother’s bouquet from her dear child.  Will I ever have another chance to give her this precious little bouquet?  I don’t know but I’m not taking a chance on time stealing my opportunity.  You really do live as if each day is the last one.  I live this out in real time but this story could happen to any one of you.  A loved one could die in an accident or have a massive unexpected heart attack.  I appeal to you, no matter what you do remember life is fragile.  Despite going through this living hell of anticipatory grief I am still thankful that I at least get to go through it knowing I can make a difference in the time I have.  Make sure you make a difference in the time you have with your loved ones.