3 Caregiving Myths

Caregiving was a journey for me. From heartbreak to healing I traveled a road I had never been down before. There were potholes and there brief patches of well-paved progress. My learning curve was very short and very steep. I had only three months with my wife Margaret after she was unexpectedly diagnosed with Stage 4 pancreatic cancer. In that time I had to organize medical appointments and prescriptions, interact with family, friends, and others who also cared very much for her. I also had to make decisions with her about quality of life vs. quantity of life. Then there were the final passage decisions to make. Most importantly in the midst of it all was making sure she and I had time together that was meaningful.  And I had to find a way to do all of that and still keep my professional business life afloat.

Just writing about it all now exhausts me! There was so much to understand, figure out and accept. Along with family members, beloved friends and medical professionals I could get support and information from, I discovered there were community resources, too.

But as I reached out for them I discovered I had to undo my own thinking. I needed to determine which of my thoughts and beliefs about caregiving were true and which weren’t.

Here a few myths that had to be dispelled before I could make clear-headed decisions:

1. No one can possibly understand my situation. I was a man who successfully balanced executive and personal responsibilities and was known as someone who could ‘make things happen’. Yet, I struggled in the face of terminal illness. The shock of Margaret’s illness hadn’t even settled in and there I was trying to put what pieces I could together so that the situation would stay neat and orderly. 

Sharing my concerns and confusion with a select group of people helped me get through some of the tougher days. We were a team and that created a level playing field. CEO, family or friend, we all cared about Margaret; that’s what we shared. Caring about each other’s struggles lightened the load for all of us.

2. Finding treatment would be easy. A reliable medical team is indispensible but what happens when the doctor or other specialists are not able to see your loved one because of scheduling conflicts? Working against the clock to mitigate an unplanned change in medications or unexpected complications with side-effects I was often upset. I couldn’t force a nurse to prescribe medicines and no amount of internet research could provide a cure.

I hoped against hope that we’d find a miracle if we just waited long enough. Turns out, having time wasn’t going to be an option for us. Luckily we worked with hospice when the time came and they made the final stages of the journey easier. I realize now that’s a miracle of its own.

3. Caregiving is always a negative experience. I never thought about being a caregiver and I never thought I’d lose Margaret to a terminal illness. After the diagnosis, worries set in. I wasn’t able to reduce her pain, I wasn’t able to sleep well and I fought like hell trying to keep everything together. And my attitude would slip into fear and depression.  I saw how a frown on my face would become one on hers.

Accepting the reality of our situation brought great relief and that relief was able to make way for joy. As her caregiver, I had time with her; time that could not have been better spent. Being the one to take her to her medical appointments or learning to cook foods that she could easily digest turned into opportunities to still share everyday life with her.  In some ways, our laughter was richer than it had ever been because we understood its importance. Getting a chance to really be there for her and with her especially during the final phase of our time together actually made it easier to say goodbye with love.

If you've got myths to share, I'd love to hear about them.

J. Dietrich Stroeh is author of Three Months: A Caregiving Journey from Heartbreak to Healing (2012 FolkHeart Press). For more information, visit www.threemonthsbook.com.