Navigating Grief: When you are the caregiver

Dawn crept through our bedroom window. I hauled myself out of bed and stumbled down to the kitchen. I ran the water in the sink and began to scrub carrots for his morning juice. As the water flowed, my own hot tears streamed down my face.

I wept, recalling the harrowing night before – his moaning, his struggle to breathe, and my own fear that if I fell asleep I might wake and he would be gone. I wept with heavy shoulders because I was staring down another day of serving when I was already past my breaking point. I whispered a desperate prayer to God to give me a seed of courage.

Somehow I walked back to the bedside of my husband to offer him the gift of hope. This went on for days and weeks. The memories are vivid for me even three years later. This is the work of the caregiver. This work is marked by physical, emotional and spiritual exhaustion. For some, the work lasts for years.

It is hard and holy work.

I now know the most difficult job I have ever faced is being a caregiver for my husband when he was diagnosed with cancer at age 40. I also would not trade that time with him for anything. It was my privilege to usher my husband to the throne of God.

Battling guilt

Caregivers often battle guilt. As I watched my husband’s health decline and the weight fall off his once-athletic body, I felt guilty.

Why him? Why not me? What had we done wrong?

I secretly longed for respite. I pined for time away from the house. I needed a break from the heaviness of it all. I also had a hard time accepting the relief when it came.

One weekend, my husband’s best friend offered to come stay with him and rallied some of his best college buddies to come visit. I was slated to take a group of mom leaders from my church to a one-day conference. I desperately needed the time but I was filled with such anxiety and guilt about leaving my husband behind. I knew he was in good hands, but it was difficult to step away.

If any of you have ever cared for someone with a terminal disease, you know what I’m talking about. Death seems to lurk around every corner. There’s no time for self-care when someone you love is suffering.

Now I know that’s not true. It’s pertinent that caregivers take breaks. We cannot care for others well when we are depleted of energy ourselves, when we don’t feel in our right mind.

Is it any wonder that the conference I attended that Saturday was entirely devoted to supporting people in times of crisis? Every word, every message, every song penetrated my soul.

Diving into anticipatory grief

I needed that time away to breathe, to process and to grieve.

I grieved the way things once were. I grieved the beautiful memories we had made and the adventures we chased in our life together. I grieved dreams of growing old together. I grieved a life my three young daughters would face without their beloved Daddy.

I understand now I was experiencing anticipatory grief. People rarely talk about anticipatory grief, but it’s the kind of grief that helps us to process the impending death of a loved one. Those days of grief were horrible, but they were doing important work in my heart. They enabled me to release my husband when the time came.

My mother-in-law told me it would happen. She told me I would feel the shift in my heart. For weeks, I didn’t want to believe it. I thought acknowledging death would somehow be giving up hope.

She was right.

One day my prayers changed. For months, I prayed fervently for the miracle of healing. I believed that my God who raised Lazarus from the dead could also revive my Ericlee. I still believe that. I also remember that one day my prayers became pleas for mercy. I begged God to take him home. I just wanted the suffering to stop.

I was able to whisper in my husband’s ear that we would be ok. Our community would care for the girls and me. He was free to go on to Glory. That day I gave him wings.

Pivoting away from haunting memories

Perhaps the most challenging part of grief when you were the caregiver is wading through the haunting memories. I watched my husband’s face become gaunt. I saw the tumor grow. I followed the bumps appearing all over his body as the disease spread. I heard the strain in his breathing as the cancer invaded his lungs near the end.

Try as I may, I can’t wipe away these memories.

I also have some sweet memories of serving him. I remember one Sunday when we had friends coming to visit I found myself fumbling through the bathroom drawer for his toothbrush. All the supplements, medicines and juices were staining his teeth. At the time, it felt silly – maybe even obsessive of me – but I wanted him to have clean teeth.

There was so little I could do at that point that brushing his teeth felt important. Looking back, that little act of service has become a savored memory. Did it matter that he had clean teeth? No. Would perfectly brushed teeth save him from death? No. It mattered to me because it was one of my last chances to give my man the gift of dignity.

It mattered to me because I saw the look of love in his hazel eyes when he could not even speak words of gratitude.

If you are caring for someone today who is battling a disease or nearing death, you are not alone. In the midst of it, you may not feel like it’s a privilege to stand by someone’s death bed, but it is. Caregiving is important work. It’s hard, beautiful, and sacred work.

Have you missed the other articles in our Navigating Grief as Life Moves Forward series? Check them out here:

The Garden – an introduction to the series

Grieving Together – an article on grieving with children

Choosing Joy – a guest post about a spouse choosing joy even on a long cancer journey

 When a Grandparent Dies – a guest post about how one mom is navigating her own grief and grief with her kids 

Facing Triggers and Trauma – an article about steering through grief when triggers and trauma arise

Would you like a copy of my FREE resource for “Grieving with Kids“? I’m passionate about meeting people in their grief and sharing a message of hope. Let’s connect!