A Better Question: How Much Do You Worry?
Researchers often ask, “How many hours per week do you care?” That question misses the mark.
I’ve been a student of the caregiving experience for 30 years. I’ve had the good fortune of interacting with family caregivers just about daily during those three decades. I also informally research the experience by asking family caregivers to share their experiences through surveys. When researchers share the results of the caregiving studies, I review their insights.
Two weeks ago, I had a perspective shift about how we define caregiving. While reviewing a review of caregiving research, I realized we ask the wrong question to define a caregiving experience. Research after research asks a family caregiver, “How many hours per week do you care?”
That question, though, doesn’t reflect our true caregiving experience. I may help my parents a few hours a week but I often worry throughout my day.
During a caregiving experience, we live with uncertainty. We’re not sure when the next decline will begin, when the next medical crisis will happen, when the next midnight fall will happen. We do our absolute best to prevent but we can’t stop the progression of a disease or chronic illness. We also can’t predict how the disease or illness will progress for our caree.
We’re also unsure if the home health aide will be on time, if our caree’s benefits will cover the treatments costs and if we’ll be able to keep it together during a work meeting because of an awful caregiving night.
During a caregiving experience, we live with an unknown end date. We can’t know how long our caregiving experience will last which means we’re budgeting without the data we need and planning without really making firm plans.
With all the uncertainty, we can’t help but worry. Consider what family caregivers shared with us in our Worry Assessment Tool:
“I worry throughout the night that something will happen to mom. Because I get up several times in the middle of the night to check up on her, I'm tired throughout the day.”
“I typically worry when I’m tired and don’t have the energy to redirect my thoughts. I worry about what the future will look like with the responsibilities I will be carrying. I also worry about future loneliness.”
“Worrying distracts me when I am trying to work. I am always worried about finances. Right now I'm worried about healing a wound and how to prevent it from happening again.”
Our health risk during our caregiving experience is the time we spend worrying and stressed out. Yet, the research doesn’t reflect that insight. The research also prompts us to count hours which can lead us to make a judgment about our experience. If I only care for a few hours each week, does that mean my situation isn’t difficult enough for me to get help and support?
Last Monday, I gave an interview with a reporter about my caregiving experience and my work supporting family caregivers. The reporter asked, “How many hours per week do you spend helping your parents?”
That question immediately made me think, “Oh, my gosh, I don’t help enough. I don’t do enough. I shouldn’t be giving this interview.” Of course, after the interview ended, I realized I spend much more time helping every week than I give myself credit for.
If the reporter had asked, “How much time during your week do you worry,” I would not have missed a beat. I would have immediately answered, “A ton.” I worry so much that my 86-year-old mom regularly asks me not to worry so much.
That question about our time spent caring also brings out an ever-present worry: Am I really doing enough? Should I be doing more? Do I need to be doing more? What does it say about me that I’m not doing more?
We worry if we really do enough. That’s a terrible worry to carry during our day.
Sure, we need to know about number of hours we spend helping and caring. Let’s also be sure to ask about the time we spend worrying. That’s the data that will better expose the true impact of a caregiving experience.
Please tell us about your worries in our quick assessment.
Please feel free to tell us about your stress and your compassion fatigue.