A caregiver friend of mine tells the story of being “uninvited” to a dinner party. Her husband had younger-onset Alzheimer’s, although few people were aware of his illness then. He enjoyed people and compensated for his problems by staying quiet for the most part. The hostess, though, learning of his diagnosis through a mutual friend, called to retract her invitation.
“I’m sure you understand, don’t you?” she said to the caregiver. “It might make the other guests feel awkward. We’ll get together another time.” My friend had been looking forward to the party, and the rebuff added to the slow-simmering grief she lived with, witnessing her husband’s transformation from the successful, well-read, witty man with whom she had shared forty years of life, to one who spent most of his days sitting in a chair, his face fixed in a somber, uncomprehending expression.
Most people aren’t deliberately inconsiderate. But they aren’t sure what to say and do when dementia changes a friend’s ability to carry on as before, or how to support a caregiver coping with a husband, wife, partner or parent adrift in a muddled world, where not much is familiar and thoughts disintegrate before they can be assembled into words.
We’re less likely, perhaps, to be that dreaded fair-weather friend when grief is caused by an accident or a heart attack, or when it happens because of a disease that leaves intellect and personality intact until the end. Such a loss is easier to understand and imagine. There’s an almost tangible 'before' and 'after' line—before the car accident, after the cancer diagnosis—which we know to respect.
My husband’s death, and my brother’s, were swift, instant, bone-chilling. There was a violent division of my life into distinct periods. Sympathy from people was immediate and profound. I’m losing my parents in a much different way, as though they are being torn from me by the force of a slow-moving crowd. They’re in my sight but steadily, helplessly pulled further and further away. It seems to be happening at a below-the-radar level, imperceptible to many on the outside looking in, who cannot see the relationship crumbling like an unstable ledge.
Here are a few things to remember about helping a friend with grief, whether it is caused by a sudden loss or by the measured losses of long-term caregiving:
1. Grief can be invisible. We’re conditioned to put a good brave face on the most terrible situations. Look into a friend’s eyes for a second or two before assuming everything is okay or that the worst has passed. You may see the truth more readily.
2. Grief doesn’t happen quickly. Think years, not months. Don’t say When you’re feeling better, give me a call. Instead call your friend yourself, and say I was thinking about you. How are you?
3. Grief doesn’t necessarily follow predictable stages. No two relationships are alike. Don’t analyze (You must feel guilty) or criticize (It’s time for you to stop being sad and remember the good times). Instead look for ways to show kindness: dinner, a letter, a night out, a phone call, help with a task. Small things count.
4. Grief can’t be fixed. Listening with empathy is easier and almost always more helpful than problem solving, especially if you haven’t been through a similar experience, and even so. Unsolicited advice is hard to take. We’re generally better off tapping into our own wisdom and common sense than being told what to do, and one of the more comforting ways to find these answers is by talking with a supportive, nonjudgmental friend.
5. Grief inevitably causes an inward focus and may strip the ability to reciprocate and react normally to others. Many of the rules and social conventions we follow are based on a give-and-take arrangement, which significant pain seems to derail. Be gentle to your grieving friend—don’t hold against her what she cannot give considering the emotions and responsibilities she faces.
I was waiting in the checkout line of a bookstore a while after my husband’s death. By then, I had eaten all of the casseroles from the freezer; the cards had stopped coming. Grass had covered his grave and crept over the edges of his headstone. Yet I was still trying to find solace in memoirs of life after death—I couldn’t bring myself to read anything else. I had my latest selection in hand. A casual friend who knew something of my plight walked up and stood behind me in line. He spoke, hesitating, and began to reintroduce himself to me.
“I know who you are,” I said, with unintentional bluntness, and swept my eyes over him, up and down, as though his very normality somehow added to my hurt. It was standoffish and rude, but at the time, I just didn’t have those How are you? What have you been doing lately? words.
He took me in his arms the way you’d hug a child, pulled the book from my hands, and paid for it. It was a spontaneous kindness that cost him twelve dollars. He’s forgotten it, no doubt; I’ve remembered for fourteen years. You never know what will matter to someone fighting a private battle with grief, regardless of the circumstances. Keep in mind that this pain will pass eventually, but the gratitude for what you did to make a difference, even in a moment’s time, will not.