Saturday, July 16, 2011

Someday I'll finish what I start...

After so long a hiatus, I'm sure that if anyone is left reading this blog, they're wondering "what happened?!" and "where has this dratted woman disappeared to now!?"

Lake Michigan in the early morning

In a quick nutshell, I am back in the States, in Chicago, or rather, currently just outside of Chicago in Evanston Hospital.  I am in the Palliative Care Unit with my mother, who, at her own pace, by her own choice, is letting go of "this mortal coil" and moving towards whatever may or may not happen on that "other side".

She was diagnosed with a brain tumor at the beginning of June.  The blasted thing was the size of a golf ball.  It turned out it was cancerous.  There was unfortunately another shadow on the MRI to tell us there was another tumor possibly  forming.

Something had to be done as she was suffering incredible horrible headaches, her memory was often affected with blanks and confusion, and she'd started to have balance and vision issues that included falling and cutting her head open.

In the end, after a diagnosis was reached I flew to Chicago, and had a couple of weeks with her before the surgery was scheduled.  The last week before the surgery, I was with her 24/7, as she had fallen, needed to be rescued by the Fire Department and have 7 stitches put in her head in the emergency room. Besides which she was constantly terrified as she'd become very wobbly on her feet.

The neurosurgeon and his team operated, in Evanston Hospital on Friday, June 17 (four days after her 86 birthday which we celebrated with a party) and they successfully, and surprisingly removed the whole tumor.

We were all hopeful until Monday morning the 20th when she had a mini-stroke behind her eyes.  The surgeons went back in and inserted a stent to releave the pressure in her skull, and she remained in the Intensive Care Unit until June 30th when they removed the stent, and moved her to a regular room for 24 hours.

With what seemed like a sudden move, they discharged her the next day to the rehabilitation facility within the Independent Living complex where she lives.

24 hours later she was back in the hospital running a high fever, unconscious with an infection in her brain. This time she went from the ICU to the Palliative Care Unit within 48 hours. 

She'd made her wishes clear before the surgery (My mother signed a Do Not Resuscitate order, and she had made it abundantly clear, she was adamant that she'd didn't want further surgery or any "heroic" attempts at prolonging her life and we all honored her wishes.) 

Of course we're gutted and the process is not simple, but we're all managing - and I am in a good enough place to handle what comes next on my own.

The bottom line was finally stated by her amazing and very excellent neurosurgeon, when he came to visit her.  He looked at me over her sleeping body and said "Sometimes it seems that we surgeons just want to save everyone, but sometimes we have to pause, stop and look at what the patient wants and needs. We can't lose sight of the person.  She's an 86 year old woman with brain cancer. "

When things started to go pear shaped, everything was handled with a lot of respect, dignity and kindness. As of yesterday we've all been receiving hospice support.

I am spending my days and nights here, at the hospital, sleeping in Mom's room. And she is gradually moving towards her own endgame.

T flew from Greece last weekend and we gathered around to bid her take her journey with our blessing and godspeed.  T left today to return to Corfu.

I am already missing him, and wishing for his strong quiet presence.

Yet death and dying are very personal things, both to the person who is dying and to the friends and family affected.  We all have to wrestle with our grief and our grieving, alone.

I've not kept a journal up to this point, but I've decided to write a few of my thoughts down as I sit here in hopes that it might help someone else who has to travel this road.  

We all have to travel this path at one time or another, because we have, or will have to go through the loss of a dear someone who means something immense and special to us.

There is so much to do and many things to think about, but for now, the sitting by the bedside and the waiting seem to be what fills my days.  Quiet music plays.  I've sprayed her favorite cologne on a soft floppy plush toy that seems to give her comfort as she hugs it to herself in her dreams.

Sometimes she smiles, sometimes she furrows her brow.  There is no way of knowing for sure if any of this makes any difference, but I talk to her quietly, and sometimes I rub her back or her forehead.

I am in no man's land, waiting for my mother to die.


  1. Oh Jes...such a sad time. I did the same with my beloved Dad, but I was so glad I could be there with him at the will take comfort from that when the time comes.

    Sending you lots of hugs xxxx

  2. Thank you SO much dear Linda... this is such a difficult time for our family. I thank you for your kind words. They rest deeply.

  3. Dearest Jes, all my thoughts are with you, I traveled a similar road with my mother, but sadly was not with her when she passed on, although I spoke to her...with her listening ( as the nurse told me) 20 mins before her death, it had to be enough, as I was churned up with guilt at having to leave her side when I did. I know she heard me, and was able then to let go, if my mother was one thing it was a fighter, and she had fought her brain tumor for five extraordinary years, two of which she shouldn't really have fought, but she was stubborn that way. Your mother knows you are there, she knows she is loved, and she is not alone, though alone she must move on. Take care of yourself too, you are saying the best farewell you could ever say.xxxx

  4. Oh dear Caroline, Thank you so much for your kind words. I'm so glad you did manage to speak to her before she died.

    Isn't it strange, no matter what you do or how you do it, there's always "mother guilt"? (My mother wasn't with HER mother when she died and always berated herself...)

    Yet here I am sitting with her and fighting in my own head with other "mother guilt demons". Sigh.

    Still I guess the act of writing things down seem to expiate some of dratted guilt.

    hugs to you/

  5. It is nearly 30 years since my mother died too soon and I still remember it as though it were yesterday. These last days are precious and I pray they will be peaceful for your mother and all who love her.



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