Caregiving: If You Knew the Ending, Would You Change the Beginning?

By Elaine Williams ©2008

When someone you love is told they have a terminal illness, you world becomes a narrow focus based on doctor appointments, meeting with healthcare advisors and keeping that person comfortable. In essence, many times we choose to put our life on hold to see to the needs of the person we love.

My husband was ill for eleven months before he died from cancer of the esophagus. While it was a grueling experience for our entire family, it also brought all of us closer together. As sole caregiver, I was focused entirely on his day-to-day care, and I was grateful for our extended network provided by Hospice, doctors, nurses, technicians, pharmacists, family and friends.

The last two months of my husband's life I slept next to the bed Hospice had set up in our living room. At night, I lay on the loveseat I'd come to hate and listen intently to his labored breathing. It was what I did when my kids were babies—listen intently for the next breath to make sure everything was okay. When my kids were babies, as when my husband was dying, I was alert to a breath interrupted or a sign of discomfort.

I managed to sleep in bits and pieces of time, fragments that made no sense to me. I would be sleeping soundly and then I would jerk upright, wide awake. I was exhausted mentally, emotionally and physically. I had always been very healthy, but I developed laryngitis for two months while caring for my husband.

There was such uncertainty and the fear of what was going to happen to all of us. The last week of his life, as he gradually grew weaker and more frail, I reached a point where I knew there was no going back. This was it. It was all out of my hands; not that I had ever had any control. Being in control was something I let myself believe in the beginning. Perhaps it was my way of getting through each day, thinking I actually had a say in what was developing in our midst.

Many times on that loveseat, I would lie awake and stare into the dark, overcome by an utter, unremitting aloneness. It was then I asked God to take him and take away his pain.

My husband mentioned a few times the last week of his life that he really needed a haircut, but I didn’t have the heart to call the barber. I wanted to spare my husband the possible shocked reaction from someone who had last seen him when he was healthy and vibrant.

Near the end of his life it was brought home to me that when you love someone, you’re subject to a certain vulnerability, but it doesn’t mean you stop loving. Moments during his illness, I wanted to shield my family from all pain, but many days I knew there was no guarantee I could even protect myself.


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