Recalculating!

Lately, on TV, there is a car commercial that keeps repeating the word “recalculating”.  As I heard it being repeated I sudddenly realized that this word sums up my life these days.

When you are dealing with someone in palliative care there is no constant state, it is forever changing and usually not for the better.  At least not in the long run.  The thing is – my Mom may seem like she is on the way out one day and then she wakes up all cheery and fine the next morning.  Meanwhile I have spent an agonizing night thinking I am going to lose her at any moment.

It’s like being on a yo-yo.  Someone is whipping you back and forth sometimes at top speed that makes you dizzy and sick to your stomach and then once in a while a yo-yo trick is thrown in just to complicate things.

This past week I had an electrician come to the house to do some very minor changes on two outlets.  In the course of turning the power off and on a couple of times it just happened to knock out Mom’s chair lift – the one that goes up and down our stairs and cost 10,000.00 to install.  A fluke.   I call the company I bought it through and was told you could not get parts for it any more and they would not send out a technician to my house.  It is less than 4 years old.  So I RECALCULATE…..   what do I do now??  I am in a new reality of crisis proportions since now my elderly mother is trapped on the top floor of my house.  Fortunately after a day of extreme anxiety the electrician and another company were able to get a replacement part and it is now working again.  RECALCULATE….

I go with Mom to the doctor hoping to arrange for a palliative doctor to be assigned to Mom’s case.  RECACULATE… no such luck.  She’s apparently not imminently palliative so I am just supposed to keep calling and leave messages to the doctor when I have a problem.  And wait….

Mom was taken off one medication for her diabetes.  She was put on another one and reacted terribly to it.  I thought I was losing her.  RECACULATE….  Acting as doctor for my mother I call and tell her other doctor that I think she is reacting to the medication and she should come off it.  Doctor agrees.  Now her blood sugar levels are screwed up and I must every night RECACULATE to hopefully get the dosage right so her levels don’t spike.

Mom is getting weaker.  She needs more physical supports to get around.  I buy a new tension floor to ceiling pole to put in her bedroom so she doesn’t fall like she did one night.  She loves it and it is helping her.  I need to RECALCULATE…. I’m not used to her having a pole almost in the centre of her room and I bang into it every time I’m in her room.  I’m clumsy at the best of times.  This will take some extra RECALCULATION…..

I now have 4 hours respite every Sunday morning so I can go to church and not worry about Mom.  This is all fine and dandy until I realize that every sunday morning now I have to make sure the kitchen and living room is tidy, instructions are given, food is left ready, etc etc    RECALCULATE…..

Are you getting the picture here??  Everyday there is something that happens that I have to physically or emotionally or both RECALCULATE to care for Mom.  RECALCULATE = CHANGE.  I don’t do well with change especially when it is happening constantly and often at top speed.

And change is most difficult when it concerns what is directly happening to Mom.  I am in constant limbo about her condition.  Is she getting worse?  Will she bounce back or is this the new normal?  When she feels horrible at night will she be alive in the morning?  When the fullness comes in her chest and down her arm is she likely to suffer a heart attack?  When? So I RECALCULATE… thinking I am going to lose her.   No, false alarm.  Maybe something she ate.  RECALCULATE….

That word RECALCULATE is my new norm.  My new reality.  Except RECALCULATING means my new reality changes every time.  My head spins sometime.  My heart sinks lower and lower.  RECALCULATING is exhausting and highly anxiety producing.

I’m not exactly sure what the car commercial is all about concerning the word recalculating but one thing I do know.  Recalculating a car is very different than recalculating life with your elderly mother day in and day out.  There is no manual.  There is no guide.  This is uncharted territory and I am terrified.  The road has so many twists and turns and potholes and bumps that you just hang on for dear life.  You just grip the steering wheel till your knuckles are white and you RECALCULATE…. Again…. and again……and again……

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.

Easter -joy and fear

I LOVE EASTER!  I have so many wonderful memories of Easter as a kid at my grandparent’s home.  In fact, those are the only memories I have of my grandparents.  Grandma’s geraniums with their prolific blooms lining the windowsill even today brings me wafts of their earthy smells to my senses 50 years later.  Getting dressed for church with my new Easter hat and little white gloves and a chocolate bunny joyously discovered at the foot of Grandma’s brass bed lined high with her quilts.  That chocolate bunny, I swear, was almost as big as I was.

And of course, Easter means so much to me spiritually – a risen Christ!  I still get goosebumps every Easter Sunday when we sing “Christ the Lord has risen today – Hallelujah!”  It is my all time favourite hymn.

Mixed in with these wonderful memories and traditions are some very sad times from the last few years.  Two years ago on Easter Sunday my Aunt Marion died suddenly.  Then last year on Easter Sunday my Uncle Bob, her husband, joined his sweetheart in Heaven.  A strange but touching story, certainly filled with much sorrow but also tinged with a wisp of everlasting love and hope.

So it was as Easter approached this year, my logical, mathematical, autistic mind that thrives on making sense of the world through finding patterns started anticipating that the pattern would just continue.  Mom, my uncle’s sister, would follow suit and would go to Heaven on this Easter Sunday.  To you that may seem totally illogical but to my mind the pattern made perfect sense.  So as Easter got closer and closer my fear of losing Mom got stronger and stronger.  By Easter Sunday I was gripped with overwhelming fear that I would lose her sometime on that day.

For many of us with autism,  patterns are what help make sense of our world.  Our need for sameness, for predictability helps sooth our anxious thoughts.  Much of the time I convert activities, thoughts etc into mathematical – like formulas that will always ensure a predictable outcome.  Unfortunately, in this world, the word out is that “change” is the only thing that is predictable.  Try as I might I cannot control my world.  And unfortunately, for us as autistics, our need for patterns can cause great anguish like in this case, rather than sooth us.  It’s a double bind sometimes.

I must say that as I woke the day after Easter and Mom was still with me I was overjoyed.  This was one time when I sure was happy my patterns did not follow their supposed course.  What relief!  What joy!  To know that I still had Mom with me was the best Easter gift anyone could ever give me.

This Easter the dreaded pattern was broken.  I can relax now until some new pattern of my mind finds its way into my life.  It’s funny because Easter is all about breaking the pattern of humanity.  Christ died so the pattern of death is broken for all time.   Believing in Jesus, brings us life forever in heaven with Him.  And that’s a pattern that is written in his blood and death on the cross.  NOTHING can change it.  So I leave this Easter behind knowing I still have my Mom and knowing that the promise of life everlasting will never be broken.  My patterns may come and go and be broken over and over but God is the same yesterday, today and forever.  He will never change.  Wow!  That’s pretty cool to my autistic mind.  HE HAS RISEN.  HE HAS RISEN INDEED!