The Caregiver's Silent Burden

My healthy and energetic husband, business partner and best friend had a heart attack at 52. We were still reeling from the affects of 9/11 on our psyches and our business, which needed our undivided attention six days a week. Our two sons were still at home, one homeschooled and one in high school, and our lives were packed full. Life has a way of throwing us curves when we least expect it and true to form, our world was quite suddenly thrown into chaos.

I operated on adrenaline for the first few days and weeks as I took on the full responsibility of our business and livelihood, the care of our children and the care of my husband. We do what we have to do, but churning relentlessly beneath the surface was the heartbreak, the shock, the fear, the loneliness of loss. The emotional ramifications were profound and lasting. He is alive and well, but on so many levels this experienced rocked my world.

Every day women and men across generations and the socio-economic landscape are faced with the difficult decisions and responsibilities inherent in the daily care of a sick or aging loved one. Caring for aging parents is a much talked about concern among adult children, but whether one is caring for a parent, a spouse, or a seriously ill or disabled child, the silent burden of the caregiver is the same. It is profound and constant.

In the midst of the extreme stress and myriad responsibilities of caring for a loved one, family caregivers are coping with one of life's most difficult emotions, that of grief and loss. A woman caring for her husband after a stroke or a heart attack, is not only picking up the slack around the house, shouldering financial responsibilities, and the day-to-day care of her spouse, she is doing so in the midst of a very real and very personal life crisis. She has suddenly lost the emotional and practical support of perhaps her most significant relationship, even if only temporarily. Every morning she looks death in the face and consciously or unconsciously wrestles with the ramifications of losing her loved one, her dreams, and her life as she knew it.

The events leading up to a caregiving situation often occur unexpectedly and without warning. There is no time for preparation. Everything is fine until one day it isn't. The change is immediate and lasting. How is one to keep his/her head above water at such a time?

So often we talk about the role of "caregiver" as if it were a hat we put on, a "temporary" upheaval in our schedules, but it is so much more than that. The grief, the loss of normalcy, not only to our life but to our relationships, lies buried beneath the surface of daily demands. The painful emotions are squelched and shoved aside by necessity and perhaps more likely, by guilt. After all, we reason, we are alive and well. Our needs are not as important as our loved ones. It's not his fault he can't be there for me. There is no time to fall apart, to grieve, or to adjust. It must wait.

When we talk about caregiver burnout, compassion fatigue or the stress of caretaking in general, perhaps the most important dimension to address is that of the emotional upheaval, the undertaking of the grieving process that often begins in earnest and lies buried in silence far too long. The caregiver needs support, compassion and guidance with the silent pain as much, if not more, than they need assistance with practical matters. By the time we move into the caregiving role, most of us are adept at problem solving and decision-making. Our real difficulty more likely rests in making sense of and coming to terms with loss.