What I've learned from my mother as she lives with Parkinson's Disease

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My mom is 89 and has Parkinson's Disease.

She was diagnosed about eight years ago, and now lives in an assisted living facility near me.

I never really understood the terms acceptance and grace until I watched Mom navigate this daunting disease.

Funny thing is, my mother never was particulary brave, tolerant or patient. But she is all of those things now and more. As things have gotten more dire, the more sanguine she has become. Quite the opposite of how I thought she'd handle things.  Boy, was I wrong.

I'M the one who rails against her fate, who dreads her demise, who bitches and moans about dealing with Medicare, its vagaries and "donut holes" and incomprehensible reports.  I'M the coward because I can't bear to see her deteriorate as she has. And I'M the one with no patience when dealing with the occasional problems at her living facility.

She is a better person than I in every way.

When her living situation changed, it changed at lightning speed. She took a terrible fall in her garage, did several days in the hospital, then immediately thereafter, five weeks in a rehab facility.  The fall determined her long-term fate, as it became crystal-clear to us both that she no longer could live alone in her house.  As I work full-time, my taking care of mom was a non-issue.  In-home 24-hour care is extremely expensive; no way could she have afforded that.  So I had just weeks to find my mother a suitable place to live.

Mom had only two short weeks back in her house, between her return from rehab and moving into assisted living. Two weeks to say goodbye to the house she had shared with my Dad for 20 years. But she knew that her health dictated the move, so she simply resolved to do it.  Basically, at 87, she left her home and became the new kid in school. Her motto has long been the Eleanor Roosevelt quote, "You must do the thing you think you cannot do."

And she never complained about her lot.  Not one time.  She's been there over two years now, and STILL has never complained about anything.  The tough little mama who raised me is now compliant and accepting.  And grateful to be well-tended.

Every family experiences deaths, some lingering and some quick.  I believe that sudden death is SO much better, because it forces you to come to terms with the event. The shock numbs you so that you then can mourn in your own way and time.

When you witness a slow demise of a loved one, it's like they die more than once.  Each health crisis puts you on tenterhooks - will they survive this one?  Is this it? - and you both die a bit each time, even though they survive. The only good thing is that you get a chance to say goodbye.

So that's what we do, Mom and I.  We're saying goodbye visit-by-visit, working through each health crisis, laughing about the old days and talking about the lion's share of our family no longer alive.  I talk to Mom twice a day, each time knowing it might be our last conversation.  It's both a gift and a curse.

Yet I continue to be amazed by this small, wheelechair-bound woman, with her big brown eyes, her still mostly-agile brain, and her amazing courage and grace in the face of one truly awful disease.  I also know that with each call and visit, she's trying to fortify me; prepping me for her death.

One of my favorite quotes is from the ancient Greek poet Aeschylus; Bobby Kennedy spoke of it and the succor it provided him after JKF's demise:

My favorite poet was Aeschylus. He once wrote, “And even in our sleep,
  pain which cannot forget
 falls drop by drop upon the heart,
 until in our own despair, 
against our will,
 comes wisdom, through the awful grace of God.”

I've come to see that my mother's calm acceptance as she nears the end of her life is a gift to me - from her, and the awful grace of God.

Shalom, mamala.


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THAT'S RIGHT…. come closer…. closerrrr…...

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Comments

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  • This is a heart-breaking piece on your beloved mom. You are a caring and loving daughter. Acceptance and grace are abundant in you as well. Godspeed.

  • In reply to Very Terry:

    I didn't mean it to be heartbreaking. It just hit me after seeing her yesterday how truly brave she is; such a trouper in a no-win situation.

    I'm pretty good in the acceptance dept (she's been going thru this for so long now), but I could really use a grace injection.

    Thank you for your lovely comments, Terry.

  • Here's part of a poem that has helped me, "A Prayer Under Pressure of Violent Anguish" by Robert Burns: "But if I must afflicted be, to suit some wise design, then man my soul with firm resolve/ To bear, and not repine!"
    Hang in there.

  • In reply to Margaret H. Laing:

    Thanks for that, Margaret. Ol' Robbie Burns was a piece of work.

  • What a beautiful post, it truly touched my heart.

  • In reply to Kathy Mathews:

    Thank you, Kath. I just want her to know how much admiration I have for her, especially now. Such a hard road.

  • That was beautiful. That sudden, coming to terms with a death can leave you raw and open for a very long time. Please take solace in the knowing that you have done all you could to make your mom comfortable. You have provided a safe place for her to live and take good care of her. The times you spend together now will be a wonderful treasure of good memories for you in the years to come. Michelle, you HAVE learned grace, my friend.

  • In reply to Carole Lago:

    Appreciate the kind words. I only wish I didn't have this to write about. So hard to see her come apart.

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