Anticipatory Grief in Dementialand

Anticipatory grief.

I first learned the term when I was in graduate school. I threw it around a lot when I was volunteering for hospice. Now that I work with families impacted with dementia I apply the term frequently.

It could be described as the emotional response to the pending death of a loved one–but I know people who have a loved one with dementia that have experienced anticipatory grief when death was still years away. It’s seeing someone you care about slip away little by little. It’s looking at someone right in front of you who doesn’t recognize your presence–and you know they never will again.

I’ve heard Alzheimer’s called the “long goodbye.”

That’s anticipatory grief.

Sometimes we think an extended period of anticipatory grief means that we will be prepared for a death. But I don’t buy that. Sure, maybe there’s some relief when we’ve been processing the loss for some time. Yet we can’t pay our dues with anticipatory grief…grief after a death still comes for us.

We grieve our loved ones when we lose parts of who they were–when they no longer recognize us, when the lose the ability to communicate verbally, when they can no longer drive, cook, or mow the yard. We grieve bit by bit. You’d think we’d be all out of grief at some point, but it doesn’t work that way. Grief is a lot like love (and closely related to it). It’s pretty limitless.

It’s okay–and normal–to grieve someone who is living.

But we can continue to enjoy the moment even when we are experiencing anticipatory grief. We can grieve what our loved one has lost while appreciating what is left. Grieving someone doesn’t mean we finalize our relationship with them. It doesn’t mean we write them off.

It just means we mourn what we’ve already lost while preparing for more loss. In our heads, we may be composing eulogies and visualizing funerals. And many of us live like that for a long time. We get through by hoping for a “better” day even when we know someone isn’t getting better.

A few months ago, older gentlemen who attended a dementia support group I spoke at asked me if it was normal that he visually rehearsed his wife’s death. At night, he would sit in his recliner and practice what he wanted to say to her as she neared the end. He had found some CDs he’d like to play for her in her final hours. He’d written a short script of what he’d say when he called family to let them know she was gone. He knew exactly who he wanted to stay at his house in the days after she died (and who he didn’t).

“That’s morbid, isn’t it?” he asked me.

In order for something to be morbid, it has to be abnormal and unhealthy. (I know this because I just looked up the definition of morbid.) And this isn’t abnormal or unhealthy.

Death, like birth, is a part of life. And we rehearse births in our society. We decide who we would like to attend a birth. I know plenty of couples who have had “birth playlists.” Mother are encouraged to make birth plans. We anticipate birth and we make a plan.

Why should death be any different?

Someone who lost their wife decades earlier–and was happily remarried–once told me that there is no finish line to grief. Sure, you develop a new sense of normal and you do your best to move forward, but the grief doesn’t have a definitive end date.

Perhaps grief doesn’t always have a clear start line either.

 

3 thoughts on “Anticipatory Grief in Dementialand

  1. Elaine,

    Very insightful. If you give your permission, I would like to hand out copies of this article in our Dementia Friendly Community Initiative training for Walworth County.

    Thanks

    Eric & Bernadette Russow

    Dementia Friendly Community Initiative – Walworth County

    A Sub-Committee of Walworth County Aging Network (W/CAN)

    1527 Meadow Lane

    Elkhorn, WI. 53121

    262-320-7325

    888-475-1093

    dfcwalworth@gmail.com

    Find us on Facebook at: Dementia Friendly Community – Walworth County

    “Do more than belong: participate. Do more than care: help. Do more than believe: practice.

    Do more than be fair: be kind. Do more than forgive: forget. Do more than dream: work.”

    —William Arthur Ward (1921-1994)

    Like

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