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?