My mom was diagnosed with Alzheimer’s more than 5 years ago. Watching her gradual decline has been an extremely painful experience. As I’ve had to cope with my own grief, I’ve thought a lot about how to respond to people who are grieving. I thought about it after my uncle died of cancer, when I was left watching my cousins grieving and wishing I knew what to say. And I thought about it just this week, as I sat with a friend by her mom’s hospital bed and found myself at a loss for words once again.
Honestly, over the last several years, people have unintentionally said some awful things that really hurt me. So I’ve gradually accumulated my own list of what not to say.
Some of the painful comments have actually been pretty mild. The numerous times that well-meaning friends have learned that my mom has Alzheimer’s and have said things like, “She has lucid periods, right?”
It’s a natural question, but the implication is painful to me. The unspoken, “It’s not really that bad, because she’s lucid sometimes, right?” As if lucid periods would mean that she wasn’t slowly dying. As if lucid periods would somehow make it okay that she doesn’t know my name anymore, that she can’t carry on a conversation with me.
Or the time a few years ago, when I was venting to a friend about how hard it was to see her decline… I shared that she didn’t even know her way home. She didn’t know how to get to the place where she’s lived for over 40 years. He responded with, “Well, my mom doesn’t know that either.”
Now I know he was wondering whether he should be worried about his 80-year-old mother, but it still felt like a slap in the face. I wondered if I’d get that kind of response if my mom had cancer. What if I’d told you that the chemo treatments were causing such nausea my mom couldn’t keep any food down? Would you respond with a story about how your mom couldn’t keep food down when she had the stomach flu?!
Don’t minimize my grief. Don’t try to make it okay because my pain is awkward or uncomfortable for you. Don’t make me justify my feelings or list symptoms to “prove” how bad it is.
So, what should you say? Honestly, I don’t know for sure. There’s research on grief, its different stages, how people move through it, and what’s appropriate. But I haven’t studied all that. I haven’t even discussed it with other people very often, so I don’t know what the patterns are. But there is one question I can answer. What do I want you to say?
Everyone has a story…
I want this. I want your story. I don’t want you to pat me on the back and tell me it’s going to be okay. I want your story of grief. Not in a one-up-man-ship sort of way. But out of empathy. I want you to drop your guard and share with me one of the toughest periods of your life and a little bit about what you learned from it.
You see, there’s two crucial truths I’ve learned:
1. Death is wrong. It isn’t okay. Oh, it happens to everyone, but it’s not what’s supposed to happen. It’s not how we were originally designed. I believe that because of what I’ve read in the Bible, and I believe that because of how we respond to death. Because it’s always a shock.
Simone de Beauvoir wrote, “I am incapable of conceiving infinity, and yet I do not accept finity. I want this adventure that is the context of my life to go on without end.” I feel this way about the ones I love. It’s not supposed to end. Loss is painful. There are reasons to grieve.
2. There is hope. I wrote here about “gritty” joy, and how joy is richer in the midst of pain. I’ve learned beautiful lessons while grieving. I’ve had lovely moments with my mom. I believe there’s a purpose to her life, even now. I believe that God’s glory shines through in the love my dad shows my mom, despite how painful this is. And yes, I believe in eternity, that I haven’t lost my mom forever.
In the midst of my grief, these two truths remain. This is what I want to hear about when you talk to me. I want to hear about the pain and about the joy.
But know this – you can’t skip a step. Telling me about the reasons it’s going to be okay, whether it’s your beliefs about eternity or your belief in my strength… they don’t help without context. I don’t want the sanitized stories of lessons you’ve learned. I need to know about the pain you’ve been through to believe in the lessons. I need to know you see the wrong, that you understand why I’m grieving.
Believe me, I know that’s a lot to ask. It’s tougher than well-meant platitudes. It’s harder than just finding a way to diffuse the tension. But it’s your vulnerability, your ability to grieve, yet find joy in the midst of that grief… that’s what gives me hope and strength.
That said, what if we’re not close enough for you to be comfortable sharing a painful story with me? Or maybe you’re in the midst of your own stress, grief, or pain and don’t have hope or strength to offer someone else. Know this too – a hug, a simple “I’m so sorry”, or an “I’m praying for you…” Those are surprisingly powerful as well.
In your own moments of grief or pain, what do you want people to say to you? Please share in the comments below.