No Longer A Child??

One of the greatest fears I have had over the last number of years as my parents got increasingly older was for them to both pass away and I would be left an orphan – totally alone in the big wide world.

These days I face that fear directly on as I face losing my Mom, my last living parent.  This fear has been so great that 2 years ago I was in a very dark place where I concluded that once Mom died there was nothing left for me on this earth.  I planned on taking my own life after Mom went so I could be with her and Dad in Heaven.  This was a certainty for me.  Being left as an orphan somehow had morphed into a nightmare of the worst kind.

I did not understand these feelings I had.  I just knew they were there full force, staring me in the face and taunting me.  I did not want to be an orphan, alone, alone alone……..

I also did not understand the whys of these feelings until I read a book the other day called “Death of a Parent”.  In it, it talked about the universal loss we all go through.  We all lose our parents and we become the next generation.  Our mortality looms in front of us and our history of being a child disappears.  We are now a full-fledged adult.

I don’t know if it has anything to do with my autism but I have always been scared silly of growing up.  There was comfort in being the child.  Being the child meant that when I was needy and didn’t understand the world, I could seek out help.  Children rely on parents and other adults to care for them, to help them, to guide them.  As an “adult” I still rely heavily on others to help me maneuver through this overwhelming world.  This is hard enough for any normal adult but for an adult with autism the world is a very scary place.  So for me to suddenly lose my “child” status when my Mom dies is earth shattering.  Can I still ask for help when I need it??  Am I supposed to be able to all of a sudden manage everything that at the moment I can’t??  Suddenly becoming ONLY an  adult is a 360 degree change and change and autism DO NOT GET ALONG!  Who will I be??  I have enough trouble understanding who I am now.  How on earth will I ever figure out who I am as an ADULT?  I don’t know if I am making sense to most of you reading this.  I have always coveted the CHILD position in my identity.  Losing Mom will change all that…… or will it??

What if…..what if….. what if losing my identity as a child gives me the FREEDOM to explore my life as an adult?  What if it could actually be a positive thing??  What if it means I no longer need to listen to the tapes of who I have been to my parents ( even though I have loved them both dearly, I have lived with an identity of shame, belittlement at times, neglect and much hurt).  What if I can create NEW tapes of who I am?  What if I can see the future as an adventure of discovery and creativity and new beginnings instead a dead end?  Sure, there will certainly be much grief.  I know that for certain.  But could the grief be transformed into hope, renewal instead of a pit of despair of which I can’t escape from.  I think of the caterpillar and it’s transformation into a butterfly.  It literally has to die to self to be transformed into a new creation.  New life can rise out of death.  Just as Mom can have new life in Heaven, I am sure she would want me to live a life here on earth where I would continue to grow, transform, create and love.

I picked the photo for this blog of the lion with the child for a very special reason.  It may seem like a strange choice but just hear me out.  I may lose my CHILD status here on earth when Mom dies but I am an eternal child of the King, the LION OF JUDAH, my God.  I am eternally HIS child.  When I am scared, lonely, needing comfort or advice I have a Heavenly parent that I can go to anytime of the day or night.  I can climb up into the King of the Universe’s lap and rest in His unconditional love knowing my Abba Father will take the best care of me ever!!!!

I’m in Hyper-Alert Once Again!

Hyper – alert – my default setting when anything changes with Mom and the last week or so things have been declining once again.  She had to have a chest x-ray because of more coughing and bringing up lots of phlegm.  They want to rule out pneumonia.  Yesterday she went to the bathroom and was short of breath significantly for at least an hour afterwards.  Not good.   Then the last two days her feet and ankles and up her legs have swollen significantly – much more than they ever have before.  Not good.   Tonight, since she sleeps in her easy chair a lot of the night, we moved the chair out from the wall so she could use the foot rest to have her feet up.  She did not understand she could not lean forward or else the chair would tip which is exactly what it did when she tried to turn  the light out.  So she was on the floor unable to get up.  I sat there calm as a cucumber on the outside trying to figure out what to do so we would not have to phone the paramedics to  come and get her up – on the inside I am screaming out to God to help us through this.  She was finally able to get up but I cannot be sure she will remember she can’t lean forward without first putting down the foot rest.  I will be up for another few hours unable to settle in case she falls again.  A long night ahead.  I will probably be on hyper – alert setting for a few days until hopefully things settle into a more regular routine again.  For how long I don’t know.  Things seem to be changing more quickly lately.  Dealing with the constant changes is one of the hardest aspects of looking after Mom.  Change and me just don’t get along at all.  Living with uncertainty all the time exhausts me to no end.  I used to tease my Dad when he would nod off to sleep while reading the paper.  Now I know what it is like to be awake one minute and then find out you’ve been asleep an hour.  It discombobulates me – I feel I am losing control.  When I am too tired to shop you know I am beyond tired.  That’s where i am now.  But it’s funny – this tired business.  If I tried to lay down and have a nap I wouldn’t be able to get to sleep – that hyper-alert setting would override my ability to go to sleep.  It’s like sleep has to catch me by surprise – with out me knowing.  Well, might as well go do something useful.  I’ll be up for awhile.  Maybe a cup of tea – decaffinated of course.

Thankful in the Centre of Everything!

Thanksgiving has come and gone but being thankful never ever should disappear for a year like a holiday does.  Being thankful is essential to getting through the tough times.  It aids good mental health.  It’s hard to be miserable when you are being thankful.  Most of us are thankful for the usual things like family, a roof over our heads,  food on our table etc etc.  I am especially thankful for all these things but I have devised a list of a portion of things that I am thankful as a caregiver of my Mom.  It might be a little unusual but these items are lifesavers.

  1.  I am thankful for grab bars.  They help Mom stay upright and out of hospital.  I like to kid that I would easily get in the Guinness World Record book for the most grab bars and railings in my house!
  2. I am thankful for lysol and febreeze sprays.  Oh, they work wonders on nasty bathroom odours!
  3. I am thankful for Spray and Wash.  It gets most of the stains out of Mom’s clothes when she misses the mouth or has an accident.
  4. I am thankful for Connie.  She is the most amazing PSW who gives Mom her much dreaded showers twice a week.
  5. I am thankful for Sandra who helps keep my house clean and gives me respite.  She does exercises with Mom and is also wonderful to talk to when I am at my witts end.
  6. I am thankful for my cats who bring Mom and I lots of home entertainment.
  7. I am thankful for Bread and Butter Bakery which right now supplies Mom with her breakfast muffins and her favourite cookies.  Next week she may be on to some other foods but right now these make her day!
  8. I am thankful for a townhouse condo neighbour who is never home.  She lives somewhere else with a boyfriend most of the time allowing Mom to crank up her TV to ear splitting decibles and I don’t get any complaints!
  9. I am thankful for the internet that allows me to look up and solve obscure problems with Microsoft Word because Mom can’t control the mouse and clicks all over the place causing the strangest things to happen. And you better believe that it’s not Mom’s fault – the computer just does crazy things all on it’s own.
  10. I am thankful for doctors who will listen to what you say and try your suggestions  for medication adjustments, etc etc.  I would be even more thankful if I got a doctor’s salary for doing all this!
  11. I am thankful for Lysol wipes that can instantly clean up any bathroom mess and you can just throw them out!
  12. I am so thankful for Hospice Kingston – for Sharon and Anne who help me through this difficult time with such knowledge, insight and a gentle, caring way.  I would be lost without them.
  13. I am thankful for Facebook and my email that keeps me in touch with the world when I am not able to leave my home for taking care of Mom.
  14. I am thankful for my haven in the basement – my easy chair, my cozy blanket and enough sound proofing that I can cry and scream when things are way too much for me and noone can hear except God.
  15. I am thankful for frozen blueberries and milk,  my go to food when I just can’t eat anything else cause I am too overwhelmed with everything and the anxiety takes away all appetite.
  16. I am thankful for my cell phone – not so I can talk to others but so I have a lifeline to my Mom should she need me or anything happens.  It goes with me everywhere.  Works best when it is charged though which is one more thing on my long list of things to remember.
  17. I am thankful for parametics who will come and pick my Mom up when she falls but is not hurt and get her back in her chair or in bed.  I just can’t do it anymore as Mom is a lot weaker and can’t help herself get up.
  18. I am thankful for my dear friends who lift me up when I am down in the dumps or am overwhelmed.  They whisk me off to Tim Horton’s for a steaming cup of tea, some good conversation and a bit of escape from my real world.
  19. I am thankful for my Pastor who always answers my frantic emails when I am at the end of my rope no matter how busy he is with the promise to pray.
  20. I am thankful  for a God who does not change.  He is the same yesterday, today and tomorrow.  Not like my life which is constantly changing and discombobulating me to no end.
  21. I am thankful for a sense of humor which can turn the darkest times into peals of laughter.
  22. I am thankful for tea.  Lots and lots of tea.  My main sustenance, my energy booster and my wonderful relaxing time.
  23. I am thankful for Lawrence Welk.  Yes, you heard me right!  Mom and I watch Lawrence Welk every Saturday night together.  It is one of our special times together as it is her favourite show.  I just like looking at the crazy hairdos and fashions!  Well, I must admit I like the music too.  Must also admit I’m glad when it’s over!
  24. I am thankful for Mom.  For this lady who frustrates me sometime to no end but who I love with a fierce love.
  25. And finally ( although there are many many more things and people I am thankful for) I am most thankful for God, the one who gives me the strength to keep going and the one who provides all that I need to do this incredibly difficult job of looking after my Mom and who lavishes His love on me as his precious child.

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!