Depression and the Too-Secret Grief of the Dementia Caregiver
By Paula Spencer Scott, Caring.com senior editor
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:
- 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.
- 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.
- 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.
- Finding a support group or network. Formal or informal, outside support helps "normalize" these tough emotions, the Case Western Reserve researchers say.
- 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.
- 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 I owa Spirit Walker, used under the Creative Commons attribution license.
I knew I've been grieving my mom's losses for several years. Sometimes it's more intense than others, but I've often said, "She's dying 1,000 deaths"...same idea as the article. I'm just glad to know I'm not alone and that grieving prior to death is normal and expected. I do feel more prepared for the eventual end and know it will also bring some relief from watching this slow, struggle. So, this article was very affirming and I liked the way it clearly listed the "things that help". Thank you!
Cathie, I'm sending you a hug and keeping you in my prayers. I know exactly how you feel. Your description of your mother sounds like you've been watching my mother and me for the past several months. I moved in with her after my Dad passed away in February and life has not been the same since. I sometimes get so frustrated or angry at the disease that I have to walk out the room and be by myself for a while. Mom wants to see Dad and her parents who have been gone for over 20 years. When she doesn't hear from them she thinks they don't love her anymore and doesn't know what she did that was so wrong. It's heart breaking. We don't know whether to tell her they're gone (which we've done in the past with disasterous results) or let her be sad because "they don't love me anymore". Those times are the worst - even worse than the evil-mean you describe which we have frequently. When she gets mean, I just leave her alone for as long as it takes for her to go on to another thought. Sometimes that's several hours during which time I check on her but do not let her see me. Best of luck with your mom. You will be in my prayers. Betsy D.
Your article made sense and nailed how I am feeling. My mom has dementia along with they have her on some serious pain meds and the "anticipated grief" is more painful I think than if she actually died. To see her getting farther and farther out there in a world of her own and not being able to reach her totally. It feels like as if she were hamging over a cliff clutching my hand and I was slowly losing my grasp and she was slipping farther and farther and not being to hold on to her. The accusations of stealing her car cause she doesn't remember she asked me to go to the store or remembering giving me permission to use it to run errands. Or the accusations of stealing her money cause she forgot she told me to go to the bank or go buy her something. She gets very vindictive and down right evil-mean sometimes. Or gets up in the middle of the night and thinks she's cooking for someone and turns on the stove. It's scarey cause I am afraid I won't hear her if she falls, or leaves the stove on and starts a fire. There is no hope and joy in my life right now and I want so badly to be a pleasant thought to my mom. She is deeply depressed also cause she knows how bad she is getting and doesn't want to lose her mind, get old and die. She's scared too. But, because she thinks I am trying to take from her she doesn't trust me enough to confide in me about something so intimate. I truly feel totally lost most the time.