03
Oct
10

Dying by degrees

Sometimes people die in an instant.  Other times, they die slowly.  I’ve been watching Julie die for weeks now.  Slowly, her world becomes smaller and more difficult for her.  A few weeks ago she could visit for an hour or more.  Two weeks ago it was 30 minutes.  A week ago it was 15 minutes.  Now it might be 5.  Or zero.

A few weeks ago I started having to walk with her anytime she was moving, because she seemed a little unsteady.  Then she needed a hand getting out of a chair.  Now walking even a few steps alone is out of the question and she can’t stand up at all without a lot of help.  Soon the two of us might not be able to get her standing at all.

At some point for most terminally ill people, the mental functions begin to deteriorate.  Julie started searching for words a while back.  Then she started using the wrong words for things.  Decisions became more difficult to make, and I stopped giving her as many choices.  In the last few days on occasion I’ve had to give her directions around the house — which way to the table, or the chair for example.  Today she asked if this was our home, and then asked me to tell her about “home”, making quote marks in the air with her fingers.

Our dog was one of the great pleasures in her life.  Yesterday I realized that he no longer brought her joy.  If she notices him at all, she seems to find him more of a pest than anything else.

And today we passed something of a sad but expected milestone.  For the first time, she didn’t know who I was.

As I say, I was expecting it, and it doesn’t change my job.  She still trusts me to take care of her and watch out for her.  When I tell her who I am, she believes me.  It’s more like she doesn’t recognize my face than that she doesn’t know who “Brian” is.  At one point she told me that “Brian will know where [something] is.”  This could be a result of the disease, or of the meds.  It doesn’t matter, since we’re not going to take her off of her pain meds in order to clear her mind.  Comfort is the rule of the day — all else is optional.

And the meds do seem to be keeping her comfortable.  That’s a blessing, and all I’m really hoping for.  If the 9/22 guess is accurate, I’ve got something less than 10 days with her.  If we can keep her comfortable through the final stretch, that will be a victory in my book.  I’ll take my victories where I can find them.

I think that’s it for now.  Take care, everyone.  Thank you for all your warm thoughts, your prayers, and your good wishes.

-B.

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9 Responses to “Dying by degrees”


  1. 1 Laura Illige Harvey
    October 4, 2010 at 7:16 am

    Oh Brian – hugs and love to you. I wish I could help in some way. Laura

  2. 2 Lynnette
    October 4, 2010 at 10:37 am

    Virtual hugs to both of you. Take comfort in knowing you are doing the very best thing you can for her in her last days. You are amazing. I am sorry you are traveling this journey at all, but she has the best partner available for it.

  3. 3 Tom Luther
    October 4, 2010 at 6:23 pm

    Thank you, Brian,

    For sharing your journey. I don’t know you or Julie, but I expect to find myself in your boat in the near future, and it’s good to know what I might expect. My heart goes out to you as you both walk through this dark valley.

    • October 4, 2010 at 7:51 pm

      Tom,

      I’m so sorry to hear that you are in a similar situation. Know that you are not alone and that people care. As huge as these events are in our lives, we are not the first to walk this path. Many have gone before us, losing a dearest loved one, and continuing on to find that life is still good. We each have a dark, sorrowful time ahead of us, but there will be sun again and we will find joy.

      -B.

  4. 5 Mary Jane Greenlaw-Essary
    October 5, 2010 at 11:19 am

    Dearest Brian, Teddy told me that she, Bill and Aunt Julia were coming to see you and Julie Kay. I hope that visit brought you some comfort. I never know what to say to someone who is dealing with death. Having been there with both my parents I do know that there really are no words. Just know that there are a lot of people who love both of you soooo much and want to help or be there in any way they can. In my case, distance prevents me from doing much more than saying “I’m praying”. I have such admiration and respect for both you and Julie Kay and I know in my heart, that although the coming months are going to be difficult, the incredible life the two of you built together is going to provide great comfort. God has his hand on her shoulder and will wrap his arms around you soon. Love to you and Julie Kay. Mary Jane(cousin)

  5. 6 margaret Stonich
    October 5, 2010 at 3:58 pm

    Dear Brian,
    Thanks for sharing your heart wrenching, honest account of caring for Julie in her last days. Her decline has been so rapid considering we were talking on the phone a few months ago. I am glad she is comfortable. I appreciate you sharing about Robin, I was wondering if he was still able to give her comfort. It must be difficult sharing this most intimate experience with us. Some how this helps me to imagine my own passing. I hope I have a partner as wonderful as you.

    P.S. You write really well!!

    • October 5, 2010 at 8:05 pm

      My comment about Robin no longer bringing Julie any joy was true at the time. On two subsequent occasions, however, Julie has made a point of petting him or visiting with him. I’m glad to see that, and of course, Robin is too. You don’t suppose Julie just wanted to make me look bad, do you? In spite of her difficulty speaking or making decisions, she does still slide in an occasional joke.

  6. October 6, 2010 at 10:45 am

    Julie and Robin have a bond that goes beyond the daily peaks and valleys for dear Julie, I think.
    Brian I cannot emphasize this enough, Julie and you (and Robin) are being sent so much love through the distance (near and far)…

    …a time not too long ago Julie and I shared some time together, during our visits I found that she and I have some common interests and thoughts. I feel compelled to share this one today for some reason (and I have before) but here it is again:

    Go placidly amid the noise and haste,

    and remember what peace there may be in silence.

    As far as possible, without surrender, be on good terms with all persons.

    Speak your truth quietly and clearly; and listen to others,

    even to the dull and ignorant; they too have their story.

    Avoid loud and aggressive persons; they are vexations to the spirit.

    If you compare yourself with others, you may become vain or bitter,

    for always there will be greater and lesser persons than yourself.

    Enjoy your achievements as well as your plans.

    Keep interested in your own career, however humble,

    it’s a real possession in the changing fortunes of time.

    Exercise caution in your business affairs, for the world is full of trickery.

    But let this not blind you to what virtue there is;

    many persons strive for high ideals, and everywhere life is full of heroism.

    Be yourself.

    Especially do not feign affection. Neither be cynical about love;

    for in the face of all aridity and disenchantment,

    it is as perennial as the grass.

    Take kindly the counsel of the years,

    gracefully surrendering the things of youth.

    Nurture strength of spirit to shield you in sudden misfortune.

    But do not distress yourself with dark imaginings.

    Many fears are born of fatigue and loneliness.

    Beyond a wholesome discipline, be gentle with yourself.

    You are a child of the universe no less than the trees and the stars;

    you have a right to be here.

    And whether or not it is clear to you,

    no doubt the universe is unfolding as it should.

    Therefore be at peace with God, whatever you conceive God to be.

    And whatever your labors and aspirations, in the noisy confusion of life,

    keep peace in your soul.

    With all its sham, drudgery and broken dreams, it is still a beautiful world.

    Be cheerful. Strive to be happy.

    = Max Ehrmann =

  7. October 6, 2010 at 11:51 am

    Brian,
    I can’t stop thinking about you guys – but I’ve struggled with what to say. There are no words. Please accept this virtual hug, and give a real one to Julie from me. I continue to pray for your strength, peace, and endurance through these final days. You are surviving the unimaginable. You are an amazing husband and friend. We should all be so lucky as Julie to spend out final days cared for by such a man.
    With much love,
    Jenny


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