When Caregivers Grieve

Martha Carlson

My husband. My caretaker. Despite cancer, we’ve continued as we always have, with temporary disagreements, constant love and happy – and sad – surprises. We take care of each other.

But as I approach three years with metastatic breast cancer and an increasing number of people with the same disease, who I know personally and via social media, face progression, pain or death, I’ve been thinking more about my husband being the main caregiver in my life. With 27 years between our first date and today, I’ve been witness to a lot of sadness in his life. Today, it isn't me that he grieves for, but another friend who is walking that tricky line between getting better and death.

Watching your caregiver grieve is not easy. How will he accept the losses and continue to care for me? Where do his own health and life mean that he may not be able to give everything I need? What if I want to put him first, over myself? I’ve seen this caregiver face the death of a close friend he hadn’t wanted to disturb as cancer treatments intensified. That choice meant there was no final statement of love and goodbye, after decades of friendship where love was an unexpressed reality.

I’ve also seen him change that reticence into action with the care of another friend. It’s that change that gives me hope. No, he’s not going to save my life, but I think that by extending his hand and heart to the people he loves, my caregiver will save his own when he needs it. Caregivers have to be tough enough to face loss and tender enough to love despite loss. As a patient faced with the endless balancing act of living with incurable cancer, I try to help him find a way through with his friends, knowing that someday he may need to remember them for me.

Be there. Being "present" can be a struggle when someone you love may be dying. But it’s important to reach out with real love and to try not to hide emotions behind a wall of "duty."

Say something. If you love the person you’re caring for, tell them now. Regret is real. With ongoing illness, grieving sometimes seems to take a seat behind finding new/better treatments and care or being "positive." It can feel like by doing something you have expressed your love, (and you have) but, speaking as a patient, please say it directly and out loud if you can.

Tell your stories. Re-telling our shared memories is a way to find joy in a difficult place. I didn’t realize that was going on until I saw my husband doing the same thing with another person close to him who was suffering. It’s a distraction and reaffirmation of a well-lived life. It’s a sad thing to have metastatic cancer, and it is difficult to accept that the people you love will need strength because of you. For my caregiver, and for all the caregivers out there, one month (November is National Family Caregivers Month) of gratitude is hardly adequate for the love you give year-round.
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