Most of us were taught that grief is a tsunami of sadness that follows the death of a loved one.  People living with Parkinson’s and the families who love them understand that grief encompasses a lot more of life than just the day someone dies.

The diagnosis itself, may feel like a tsunami.

No matter how many inklings we may have had, that this is what the doctor was going to say, hearing those words, somehow eclipses everything else.  Suddenly, everything we thought we knew and could count on, feels unstable.  The plans we had for our future no longer seem concrete.  It’s normal to grieve for the hopes and dreams that now seem out of reach.  It’s normal to grieve for those things that may not come to pass.  It’s also normal to feel angry or to feel so numb that we don’t even know what we’re feeling.

As the shock of the news wears off, new options and new horizons may come into view.  They may bring hope and focus.  Or they may not.  Both are normal.  If they bring hope and focus but don’t pan out it’s normal to grieve for those failed attempts.  It’s normal to resent the time and energy expended, the person who suggested the options and the uncertainty that remains.  It’s all normal.

There will be waves of grief over the simple, daily things that change as Parkinson’s takes hold.  Each time someone loses a bit of agility or independence tiny waves of grief will follow.  Often, these micro-griefs lead to anticipatory grief over what might be lost next, or how soon something else might begin to break down.  These ongoing waves of grief are normal and although they can feel discouraging to live with, they pass more gently when we can admit them.  Be gentle with each other as you navigate through them.  The ripples of grief reach far beyond the person who has Parkinson’s.  

Families who learn to surf the waves of grief and change, do best.  They become adept at juggling plans, adjusting dreams and dealing with limits and abilities that can seem to change daily.  The healthiest families recognize that each loss they encounter is real no matter its size and that feelings about loss are all normal.

Grief isn’t only about death and life doesn’t always turn on a dime.

More often than not, life and loss simply happen, one day at a time.

Written by Catherine Mitchell, Certified Grief Recovery Specialist serving the Durham Region.