Caring Currents

Depression and the Too-Secret Grief of the Dementia Caregiver

Last updated:

August 15, 2008
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I cried when the news came that my beloved grandmother had died. But I also felt a lift of relief! Her slow, six- or seven-year Alzheimer's freefall had ended. Grieving for her was different from mourning my mother, who had died after a mere four weeks after a cancer diagnosis. The difference: Gram's Alzheimer's had already taken me farther down the road of grief.

We aren't just taking care of the people we love with dementia; we're simultaneously grieving for them. Social workers call this paradox anticipatory grief. I wish there were a zingier name -- one more easy to relate to. It's also been called "the long goodbye," "living death," and "experiencing lots of little deaths."

That's why I wasn't surprised by this week's news that more than 25 percent of dementia caregivers suffer from depression. If anything, you'd expect higher numbers. Most telling is the nature of their symptoms (compared to others' depression): More sadness, lack of hopefulness, and more guilt. Case Western Reserve researchers studied spouses, but adult child caregivers sip from a similar emotional brew. Those emotions make sense. Previous research has shown that it's not hands-on care or a lack of "me" time that burdens dementia caregivers most. It's the black, lurking, drag-you-down nag of mourning.

Here are 6 things that help:

  1. Just knowing anticipatory grief exists! Just because your loved one is here-but-not-here doesn't mean you don't get to show black emotions, too. Don't feel guilty for feeling them.
  2. Realizing that it's "real" grief. A 2001 study in The Gerontologist called anticipatory grief equivalent in intensity and breadth to the response to death. The odd silver lining: Anticipatory grief prepares us for the end. It's a long, slow, painful warm-up, but it is a warm-up.
  3. Not falling for the shimmery goodness of dementia care. Many caregivers wax poetic about those unexpected "I love yous" or sudden bursts of clarity and gratitude. Sure, embrace them. But the rest of the time, well, there's the rest of the time. Don't beat yourself up for going stir crazy or needing to escape to the nearby Big Box Store.
  4. Finding a support group or network. Formal or informal, outside support helps "normalize" these tough emotions, the Case Western Reserve researchers say.
  5. Being nice to yourself. Grief (anticipatory or otherwise) puts you at risk for depression. Depression puts you at risk for dementia. How to get off this vicious-cycle? I know, easier said than done. Start small -- enlist a volunteer to help, say, an hour a day so you can squeeze in a freeing (and cardio-smart) walk.
  6. Tapping into hospice. Enlisting hospice help as your loved one descends into end-stage Alzheimer's isn't, as some people mistakenly believe, a secret death wish. You can't control the timing of the end. But it does come eventually, and you deserve the skilled guidance that experts in this passage can offer you, even if it's still months (or more) in the unknowable future.

Image by Flickr user Iowa Spirit Walker, used under the Creative Commons attribution license.