My Grief Stew

Today I played hooky from church.  I wanted to be alone, alone in my grief.  Anonymous actually.  I went to Chapters and sat amongst  a throng of people and was totally alone and anonymous.  For a long time I’ve aired my grief like dirty laundry hanging out to dry.  Every last piece of laundry scrubbed over and over attempting to somehow make it cleaner, nicer smelling.  Well, I found out that airing our grief in all it’s detail gets you nowhere.  At least it got me nowhere.  No, I must clarify – it did get me somewhere – right in the middle of getting very hurt.  So hurt, I have basically shut down.  And I cannot make sense of it.  I have no way to resolve it and I am left to wonder what in the world just happened.  Since I have no way of logically understanding the other person’s viewpoint I must conclude that I am at fault.  And that has turned my world as I know it upside down.  I must not be who I thought I was.  I thought I was a decent person, a kind person, a loving person.  But through my own fears I have turned into a monster, someone to deny that they exist, someone to totally reject.  I look in the mirror and I do not know who I am now.  I do not see who I thought I was, I see a monster.

So on top of the grief of dealing with my dear mother,  I now have another thick layer of grief to contend with. ( and just to make matters more desperate – I now have 2 family members with cancer and a couple friends with possible debilitating conditions.  My friends and family I have grown to count on in my time of desperate need or family that I wanted more than anything to reach out to after years of little contact are in their own twilight zone of grief and heartache.  I am left to wrestle with my grief mostly on my own now.  Promises to be there for me thrown aside amidst their own life struggles and upheavals.

Like the layers of an onion being peeled back one by one I cry and wail and carry on in the privacy of my basement – alone.  From now on, my grief must be expressed alone.  The onion is continually sliced with a very sharp, piercing knife that cuts to the heart of my soul.  The knife continues to cut….chop, chop, chop…   till the onion is in a thousand pieces and thrown into a giant stew – a grief stew.  My life is that stew with all the chunks of onion floating around.  At unexpected moments I bite down on a chunk of onion and the strong taste makes my eyes sting and tears roll down my face.  I never know when I will hit a piece of onion in this stew.  And it is a stew for good reason because I am stewing about all this – my autistic mind perseverates and ruminates on each bite and I can’t get the taste out of my mouth or my heart.  I have a beef with the world.  My world.  I hold no bitter feelings towards others – I have a beef with myself.  How dare I should trust my feelings with someone else.  How dare I should trust that what someone says is true.  How dare I should trust that I am worth being a friend.  How dare I,  how dare I……   I am nothing but a fraud,  a reflection – not the real thing.  Coke – it’s the real thing.  I’m a bloke – a fake, a joke.  I grieve now even for myself.  For what I thought I was and apparently am no longer.  I grieve the loss of who I was.  The peas (peace) in the stew is cruelly missing as my world is stirred up to a frenzy and my grief splashes out all over the place, hitting others and burning them, and just making everything very very messy.    Grief stew.  This may seem corny to you – and yes there is corn in the stew because it is corny – a cruel joke.  But I am not laughing.  My laughter is gone like the steam rising off the stew.  It disappears into the air, invisible, non-existant.  Grief stew.  The food I am living on right now.  And I eat it alone choking on every bite.

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……

My Christmas Wish

I haven’t written a post in quite a long time.  Christmas is such a stressful time for me and also so overwhelming and exhausting that I have been just too exhausted to think about writing.

But Christmas Day deserves a post.  What a special day.  Because I have a strong faith Christmas is very important to me.  God came down from Heaven to become a man in order to have a relationship with us.  And what a wonderful relationship it is.  But what does that have to do with this post on grief and my Mom.

Well, Mom is slowly getting worse.  We just got a palliative care nurse to help manage Mom’s care.  She is getting so weak that even signing her name on her few christmas cards was almost more than she could manage and it caused her to have severe shortness of breath.  The last few days I have noticed that when I am with her I can hear her breathe.  It’s like she is lightly snoring or wheezing or something.  Basically her breathing is getting more and  more laboured.

Mom won’t do the exercises that can help her breathing.  She won’t take the medication the palliative care nurse prescribed to help her when she is short of breath.  She wants to do things her way and although it makes me angry I have to respect her desire to do things her way.  It’s so hard to watch her go downhill.  It’s so hard to listen to her complain about all that she can’t do any more and how she feels useless.  It’s so hard to know things are only going to get worse.

I love my Mom so dearly.  I would do just about anything to reverse this aging process so I could have her with me for a long long time to come.  Unfortunately that’s not the way life works.  So this Christmas I made a wish to God.

I asked God that He would take Mom home on Christmas day so she could be with Dad in Heaven on Christmas.  I thought that would be so neat.  She would be free.  No pain, no mobility issues.  She could dance, run, skip and even just walk with no problem.  And her head… her head has caused so much discomfort since her stroke 15 years ago.  She would have no problem any more.  She would be free from her awful head.

I know in past posts I have talked a lot about needing release for me.  I have been at the end of my rope and I needed release but this Christmas wish was more about release for Mom.  I know she is miserable.  It just seemed like such a neat thing if she could be in Heaven on Christmas with her loved ones and her beloved Saviour face to face.  To see Dad again would be so wonderful for her.  I wanted that desperately for her.  But I guess it is not going to happen.  Mom’s doing well today.

Please don’t get me wrong.  I’m not wishing her dead.  As a christian I am wishing her to be in her new body with her loved ones who have gone on before her.  Of course, I will miss her terribly and I will grieve and life is going to be very hard without her.  But at some point you have to lay aside your own fears, your own desires and look beyond your own security and comfort.  I just really wanted Mom to be with Dad.  I know she misses him so much.

I don’t know if this is going into another stage of grief or another acceptance of sorts but I wanted to give Mom a special Christmas gift by asking God to send the angels to take her to Heaven.

It is true I am exhausted, overwhelmed, and burnt out.  I need release too. But I am willing to keep going as long as Mom is on this earth.  I know God will give me the strength.

I guess I will have to tuck my Christmas wish in my pocket and hold on tight to it to maybe next Christmas.  It’s OK to make a christmas wish but if it is not God’s wish then I don’t want that wish at all.  God’s timing is perfect and that is what I want for Mom.  Instead of this Christmas wish I have had the blessed chance to have another christmas with my Mom and that is so special.  When someone is in palliative care you just take each moment as it comes and you treasure each moment as a special gift.  I may  not have gotten my christmas wish but I got a very special christmas gift – my Mom for another christmas.  What more could I possibly ask for?

My Apologies for no blog

I have not written a blog in almost 2 weeks.  It has been a very difficult 2 weeks where I have felt like I was literally drowning in my grief, my anxiety and my responsibilities.  I also came down with very painful mouth ulcers (blisters) that are probably a result of the stress I am under.  Thankfully they are mostly healed up now and although I still feel I am struggling in violent waves that continue to crash over me, my head is above water for the moment.  I am hoping to write a couple of blogs in the next few days.

In a Twinkling…

A couple of days ago I went to one of my favourite places to shop – Value Village.  For anyone who is not familiar with this store it is a second hand store selling everything under the sun.  It is a mecca for treasure hunters and a big part of the fun of going is in the hunt itself.  To find that elusive item that you just never thought you would ever find, or that unique item that winks at you and begs you to take it home with you.  Well, I was looking at the jewelry when I spotted a silver bracelet.  I love silver jewelry and as I looked closer at it through the glass counter I saw the words ” Kate Spade New York”.  I love Kate Spade things but I can’t afford them so I just drool when I look at items in a store.  Here was my chance to have a real Kate Spade item and for the super price of 7.99 ( and I had a 30% off coupon).  Can’t get any better than that.  When I got it home and took a closer look, I realized it had a saying inside the rim.  It said “in a twinkling”.  How interesting I thought considering what I have been going through.

All my anxiety, grief, worry, heartache that I am experiencing daily these days is all wrapped up in that little saying,  “in a twinkling”.  When Mom takes her last breath on this earth, in a twinkling she will be whisked off to Heaven and in that same twinkling, my life here on earth will change forever.  It’s hard to believe that a mere moment in time can change everything!

I wonder every day what it will be like without Mom.  I also wonder how I will handle Mom passing.  Will I fall apart?  Will I act as if nothing happened and just stuff everything inside and move forward with my life?  Will it be a bit of both?  Will I react right away or will it be days, weeks, months later?  I’ve read some research on autism and grief that states that we often have a delayed reaction to our grief.  Will that be me?

A number of years ago, I had a very special childhood friend who I called my Aunt Agnes.  She was not my real aunt but a distant relative just the same.  I loved her to bits and loved to visit her.  When she died I was living hundreds of miles away and I invented an elaborate scenario in my mind of how she was not dead.  I believed this with all my heart for several years till I ended up in the hospital for depression and suddenly and unexpectantly it all spilled out.  I cried for days and days.  Am I going to do something like this with Mom?

I also have a habit of closing myself off when I am upset.  I don’t answer the phone, I lock the front door and basically retreat into my own world.  This is my greatest fear of what might happen when Mom dies.  I told my Doctor the other day to please, please not let me do this if it happens.  She said that for me it may be alright for it to happen for a little while but she would be there to help me reconnect with the world if I couldn’t.  It scares me.

I also worry if I will be able to do all the things that need to be done for the funeral etc.  When my Dad died my Mom was there to help me but I won’t have her this time round.  I am determined to speak at her funeral just like I spoke at Dad’s.  Will I be able to get something together to say?  Something that is honouring and loving and will bring a sense of legacy and meaning to Mom’s life?

How can a moment in time be so scary?  That “in a twinkling” is the stuff of nightmares for me.  But I guess I have to think that for Mom that “in a twinkling” will be the stuff her happiest dreams.  “In a twinkling”, she will no longer be in a body that does not do what she wants it to do, she will be free to walk without weaving and stumbling from the effects of the stroke.  She will have no more headaches and she will have her “new” head she always tells me she wants.  She won’t be an “old lady” that she despises being so much.  Best of all, she will be again with Dad and all the other members of her family that loved the Lord.

But “in a twinkling” I will be left alone here on this earth.  And I dread that moment with every part of me.

So back to the bracelet…  I am wearing it.  I am going to continue to wear it.  It is a daily reminder of what is to come but it is also a daily reminder of another “in a twinkling”.  One later, sometime down the road when I too, will in a twinkling, go to be with Jesus and I will see Mom and Dad once again.  This bracelet can be a symbol of hope if I choose it to be.  It’s all how you look at it.  Momentary pain for eternal gain.  And what I do after that “in a twinkling” that whisks Mom away from me will determine what the time between those 2 twinklings is going to be like.  I want to continue to live my life to the fullest.  I want to try new things.  I want Mom to be proud of me in how I handled myself.  I want God to be glorified in my life that I have left.  I want to help people.  This girl has plans…..lots of plans….. that will be for another blog!