The Day Everything Changed Part 2

This blog covers the next 18 days after the momentous day in Part 1.  It was a time of great distress, uncertainty, and many ups and downs.  To me it was a living nightmare.  All Mom’s routines had changed which made my life and hers very unpredictable.  Nothing was the same as it had been and it was as if we were in a swirling void of chaos and sadness.  Mom was definitely declining severely during this time and I was constantly reeling from the thoughts that any day might be her last.

After the oxygen and pump were hooked up Mom basically lived in her chair in her bedroom.  She slept more and more of the day, her head buried in her pillows.  I spent most of my time lying on the bed in her room drinking endless cups of decaffienated tea and watching her intently as she slept or talking with her if she was awake.  She wanted to know if everything was in place for her funeral and was frantic that I look into her insurance to make sure I knew what to do.  We talked about funeral plans and how she felt about leaving this world.  She would tell me she felt alone, very alone and she could not feel God’s presence.  I took my black letters I used for decorating in my church library and taped the verse ” I will never leave you nor forsake you” on her cupboard door where she could always see it.  Secretly, I read it over and over too, as I felt very alone in these bleak days.

There were some bright spots in the sadness.  Late in the afternoon, Mom was usually awake and restless.  I began telling her family stories.  I would start off with,  ” Once upon a time there was a family….”  I retold often funny family stories I had experienced since my youth.  Like the time Mom left the lemon out of the lemon pie, or the time my young brother left the lid off his jar of tent catepillars when we left for the weekend.  They were everywhere when we got back even down the sleeves of clothes hanging in the closets.  I told her about the time we were in the CN tower having lunch in the revolving restaurant and Mom put her purse down on the window ledge and it waved goodbye as we kept revolving around.  Ian and I frantically started running around the restaurant trying to get back her purse.  It had a happy ending but was just one of those family stories that gets told at family gatherings.  Part of our heritage as a family.  That was a day I will never forget.  Mom and I had a very special time together remembering stories.

On the medical side of things,  Mom began not eating at all except an occasional glucerna, a meal replacement drink.  She became weaker and weaker and could no longer get down the hall to go to the bathroom.  I brought in the new commode from the garage I had bought and saved for such a time as this.  Sitting right next to her chair it was still an effort for Mom to shuffle two steps over to use the commode.  I became everything to her, daughter, PSW, nurse, caregiver, etc etc.  I never thought I would end up toileting my Mom but she would not allow anyone to do it.  That meant I was home 24/7 basically.  I could not leave her in case she had to use the bathroom.  There were also times when she continued to be very confused.  She became frantic even if I just went downstairs because she would forget where I was and panic.  I took to writing on a white board where I was in the house and when I would be back so she would stay calm.  It meant that many nights I did not have supper because I just could not leave her that long to get something ready.  Tea became my staple food – not the best solution for an already exhausted, worn out caregiver.

Then came the period of days when for some reason she had severe diarrhea.  It would run down her legs onto the carpet, her blankets, her clothing.  I spent one night doing laundry all night.  Mom was so embarassed and I was so tired.  We were two tortured souls bound together by sickness and decline.  Nights were spent watching her intently in the dark as she still struggled with her breathing.  Whether it was sleep apnea or more mini strokes, she would often stop breathing for 20 seconds or more.  This terrified me to no end.  I would wait anxiously to see if she would start breathing again, worried each time that this was her last breath.  Often I did not fall asleep till somewhere around 2 in the morning.

Nurses were coming every day to see her and check her pump.  Our mandate was to keep Mom as comfortable as possible.  That was it.  Was this the end??  I spent each day suspended in time wondering when that dreaded moment would come and it would be all over.  Funny thing though,  not many tears were shed during these days.  I think I was in my robotic caregiver state.  I had to keep going no matter what.  There was no time to mourn or lament.  There was laundry to do, medicine to administer and I was bound to Mom as if she were an extension of me.

It was a quiet time with just the two of us mostly when the  nurses or PSWs weren’t there.  I was not able to work or go out,  All life beyond our immediate situation was suspended.  I spent a lot of time crying out to God.  I did not understand why he did not take her to relieve her suffering but I knew he was with us through it all and that he was sovereign and loving.  Although I questioned God I did not expect an answer.  I just trusted he had it all looked after.  I just had to keep doing my part in this saga.  The 2 cats were also upset.  They would often howl and Oreo would go into hiding.  Other times they would keep watch over Mom like brave little watchmen.  Gus Gus would often curl up on the bed with me as I lay drinking my tea and watching Mom sleep.

Sometimes Mom would want to watch one of her shows but she could no longer get into her sitting room where her TV was.  I would bring up the laptop and with an extra speaker she could watch a show once in a while.  But soon this became too much for her.

Gradually, Mom got weaker and weaker.  Her legs would sometimes buckle as I got her to shuffle the two steps over to the commode.  My back took a beating but I did not know of any other solutions.  My friends and doctor were adamant this could not go on.  I would not survive the emotional and physical toll it was taking on me.  I refused to accept other solutions especially going to the hospital.  It was out of the question.  I would continue to care for her as I had been doing.  Mom and I were in this together for the long haul.  However long it took.  I would not desert her.  My friends and doctor looked on with concern and worry.  Finally the palliative care nurse ordered her to be bedridden and a catheter put in.  I fussed about this but realized that it was the only option we had if she continued to be at home.  It was planned for the next day.  What happened that next day would change the course of our journey drastically.  Things would never be the same again.  Read about that day in my next blog coming soon.

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?