Remembering Dad

May 20th – a day etched in my brain that won’t be erased like that child’s toy, the Etch- A- Sketch.  May 20th is the day Dad died.  Seven years ago now, but still as if it were yesterday.

May 2nd I wrote a blog entitled ” Anniversary Grief – what’s that?”.  I talked about anticipating the anniversary of Dad dying.  It may be helpful to read that before you finish reading this blog.

Yesterday, my anticipation and grief reaction to the anniversary of Dad’s death was at its worst.  I woke up almost unable to function.  It was an effort to move, to think, to get going with my day.  I cried all through my usual therapy session in the morning.  The world was closing in on me and I felt lost.  I also was having constant flashbacks to the hospital room where Dad lay, his breathing laboured, his face contorted.  It was not pretty, not peaceful like people often say death is.  The flashbacks tormented me and I couldn’t get them to go away.   Along with having flashbacks,  my sensitivity to light, and noise was heightened to almost unbearable levels.  I decided it was one of those days where I would spend most of it curled up in my easy chair covered by a very soft blanket and rock.  I had to cancel my tutoring student which made me feel like I was once again  a failure for not being “normal” and able to handle things.

Mom, too, was having a very difficult day.  I don’t know whether it was her stroke effects that causes her head to hurt, or her congestive heart failure, or heart ache of missing Dad or a combination of all three.  I was really worried about her.  She looked awful.  I began to wonder if I would lose her as well on this anniversary eve.  I stayed home, checking on her every little while.  She did not want to talk, she looked so sad.  I felt helpless.  It was NOT a good day.

I went to bed not knowing if Mom would be alive in the morning.  My brain, working in patterns again, imagined she would follow Dad to Heaven as he had gone 7 years before.  I made sure I kissed her goodnight and said, “I love you”.  I wondered if I was in for a long, difficult, sleepless night.

I knew that on the day Dad died, I would have to run.  I don’t mean going for a jog.  I mean running like the wind to somehow still the anxiety inside me.  So….. I planned on some errands I had to do all over town.  I would roam and wander and get lost in the movement of going, going, going…   My first stop was a garage sale I had seen advertised close to my house.

I awoke to the sun streaming through my window.  It was a beautiful day.  I felt so much better than I had the day before.  Somehow the anticipation is always worse than the actual event for me.  And as I listened with apprehension, I heard sounds coming from Mom’s bedroom.  She was still with me!!  I must admit I did have a bit of mixed feelings about this.  I thought that if Mom had to go sometime, going on the same day as Dad did would somehow appeal to my autistic brain’s need for logic and pattern and practicality.  After all, it would be much less stressful to have one anniversary to commemorate than 2 different ones.  However, that aside, I was very glad to have her still with me.  She, too, was feeling much better.  After attending to all the things I needed to do for Mom I set off for the garage sale.

It was like old times.  Mom and Dad and I used to always spend Saturday morning going to garage sales.  It was our weekly ritual and we all loved it.  Especially Dad and me.  And here we were, I imagined, going to a garage sale together just like old times.  I carried on a conversation with Dad as I walked along.  I told him all about what I was doing in my life, and especially that I was keeping my promise to him and looking after Mom in the best possible way I could.  The garage sale turned out to be amazing and I picked up several treasures.  Dad was truly with me I thought.  On my way to drop off my new things at home,  I saw a sign for ANOTHER garage sale near-by.  Again I talked to Dad as I walked down the streets to this sale.  Again, it was a great sale.  Two great sales??  That was too much to ask for.  I had not been to two great sales in a row in years.  My heart soared.

I headed downtown to do some errands, then took the bus all the way to the other end of town to do some other errands before I finally arrived home in the early afternoon.  The need to roam and wander had ceased and I could finally settle down at home with a cup of tea.

Later in the afternoon, a most curious thing happened.  Actually it was a wondrous thing, a miraculous thing.  Dad loved to garden and especially loved his flowers.  At their old house, he had some beautiful tulips that were red and yellow.  They bloomed about the same time every year and the year Dad died they were in full bloom.  The house had not yet sold so I was able to pick many of them to create bouquets of Dad’s flowers for the funeral.  Those beautiful vibrant red and yellow tulips were somehow a symbol to me of God’s goodness through all the pain.  Well, last fall, I planted a whole mess of bulbs in my little garden at the side of my house – my Dad’s memorial garden I call it.  Many of the flowers were up including some tulips of pink, purple and red.  Today I knew I needed to replace some of the flowers in the bouquets I had been making for Mom from the flowers in the garden.  I went out with my scissors to pick a few and to my amazement there were a number of red and yellow tulips in full bloom!  They were not there yesterday.  I did not even remember buying any red and yellow tulips.  It was like Dad put those tulips there on this very momentous day,  letting me know he was OK and he was watching over me.  It was also an incredible gift from God to know that He too was letting me know I was loved and was not alone in the midst of my pain.  He knew what I needed on this difficult day.  I carefully snipped two of the miracle tulips and brought them in to Mom.  We marveled together of God’s goodness to us.

Well, it’s now 9:45pm, time for bed.  Time to let the grief that has been front and centre to settle back a bit into the inner recesses of my mind.  Do I forget?  NEVER!  Dad is with me every day.  I miss him so much.  But grief is like the ocean.  The tide goes in and out, the waves are big or they are calm.  It’s never the same from day to day but it’s always there, always lapping at my toes.  Dad, thanks for a good day with you.  God, thank you for you faithfulness and your endless love.

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.