Showing Up Sooner: A Lesson for Caregivers

By Kim Samuel

Four years after being disabled by a brain injury, my father, whom I adored, died of brain cancer. Eight years later, and within two months of each other, both my mother and sister died of cancer too. These were the lowest points of my life. I felt like my world was being torn apart. Yet, in my grief, I was shored up by the expressions of care and love from those around me.

In the wake of my losses, many people called me up or came to visit or wrote long, beautiful letters. Others prepared home-cooked meals to try and nourish my broken heart. Friends I hadn’t seen for many years sent flowers. Neighbors paused to offer a long hug. Everyone seemed to know just what to do, and generously gave whatever comfort they could.

Of course, nothing could ever fill the void that the deaths of my parents and sister had created. Still, for my brother and me — now the only two left from our original family of five — being surrounded by this outpouring of love helped us know that we were not alone. Indeed, the death of a loved one is typically acknowledged through a host of communal rituals. Relatives and friends join at memorial services to celebrate the lives of those who’ve left us. We share remembrances and stories. We cry. We sing. We hold each other. We say goodbye, together.

For family members, such ceremonies are often where the process of healing begins. But lately, as my work has allowed me to speak with others who’ve cared for and lost loved ones to long-term illness, I’ve been reflecting on how this concentrated show of support doesn’t always fully align with the true need. It isn’t just at the end of the road that we need others to rally around us. When a loved one’s death is preceded by a period of suffering or decline, family caregivers experience loss not as a singular event, but as one excruciating loss after another.

These losses can be enormous — for example, if a loved one loses the capacity to walk, to speak, or to remember who you are. As a family caregiver, you may miss your loved one most when you are holding their hand and sitting by their side.

Smaller, quieter losses can be devastating too — as a caregiver realizes her Dad will never be able to come to her home again because he cannot climb the steps to her front door, or sees her Mom struggling to hold a spoon with increasingly shaky hands. Family caregivers grieve for how things used to be. For the things they and their loved one used to be able to do together. For the way their relationship was, and the way it will never be again.

And when these losses come, there are no established rituals of community support. No food and flowers delivered to the door. No collective sharing of stories. Instead, all too often, these losses are met with a late night return to a darkened house and the knowledge that the coming days will only bring more of the same.

At the same time, caregivers may feel pressured to project an appearance of “normalcy,” given their other roles and responsibilities as workers, as partners, as parents. They may feel guilty for having needs of their own, when their loved one’s needs seem so much greater — or feel too sad and exhausted to summon the strength to ask for help. As a result, too often, a family caregiver’s pain goes unspoken, unheard, and unseen. Some experts have even described the family caregiver as “the invisible patient.”

Looking after a loved one, day in and day out, can feel profoundly isolating, like being alone, at the bottom of a well, where light and hope can’t reach.

That helps explain why, when a loved one dies after a period of prolonged illness, among the swirling emotions family caregivers may feel is a sense of relief. Relief first and foremost because this person we loved so much will no longer suffer. But relief as well because death is the last of the many losses that we’ve had to mourn — and because finally, after weeks or months or even years, others have arrived to share our burden.

So I hope we can all make a promise today to the family caregivers in our lives and communities. Let us pledge not to wait until their final loss, until the most obvious time to come to their aid. Let us show up sooner. Let us arrive before they ask. And let us stay for as long as they need.

For more articles by Kim Samuel, please visit: http://www.huffingtonpost.com/author/kim-samuel