As caregivers, we are wired to solve. We’re doers. Fixers. If our parents need errands, we run them. If they have questions - -about their mail or their meds - we answer them. If they are sick or injured, we may not be first responders, but we are often the first to respond. Whether we take on the role of caregiver to our parents as an active choice or without realizing it, we typically take it very, very seriously.
At the height of my caregiving experience, I had an Excel spreadsheet where I tracked everything I needed to do for my parents. At one point, it had 196 items on it. Every morning, over coffee, I reviewed the list and highlighted the tasks I wanted, or needed, to accomplish that day. Call the elder law attorney. Reset Dad’s remote control. Buy Ensure for Mom. Make an appointment with the podiatrist. I both loathed and loved that spreadsheet. I loathed how much work I had to do – squeezing it into an already busy life as a working mother. But I loved the sense of control it gave me at a time when my life felt so out of control. It was organized. It was neat. It was even color-coded! And at the end of the day, I could cross off the to-dos I had completed. It was, in fact, the exact opposite of caregiving.
When you are caring for an aging parent, often while working and raising your own family, life is not neat. You don’t cross caregiving off of a list; there is always more to do. Life certainly isn’t color-coded – it’s more of a kaleidoscope presenting an ever-changing array of colors and patterns. And, most important, you are not in control.
Control is an illusion. No one can control aging and no one can control illness. Are there things we could all be doing to influence good outcomes? Of course. But ultimately, we have no control over how aging and illness progress. And that is what makes caregiving so stressful and often scary.
When my spreadsheet was down to approximately 130 items, my mother moved into a hospice home. Her cancer was progressing rapidly and she needed comfort care around the clock. The nursing staff at hospice handled everything: her medications, her food, dressing her, even praying with her. There was nothing left for me to do for her.
Stripped of any assignments, I learned to just be with her. It wasn’t anything I had ever done before – I was always too busy checking things off my list. Every day, I would go to the home and sit with my mother. I never knew if she would be having a good day or a bad day. I didn’t know if she would want to sleep or talk, look through photo albums or watch Criminal Minds reruns. So I learned to let go. No more anticipating her needs. No more rushing to fit a long list of tasks into too short of a time. No more trying to solve for her. I couldn’t. But what I could do, was be with her. Simply be.
I learned such an important lesson in those final months. Sometimes just being with our parents and doing nothing is exactly what they, and we, need. Caught up in the chaos of caregiving, and career, kids, and chores, we forget one of the most important roles we play in our parent’s life: child, albeit adult child. I would argue it is as important that we be with someone, listen to them, bear witness to their life - the sadness and the joy, as it is to sort their pills, drive them to their appointments, and help them dress.
Sure, it was easy for me to shift from doing everything to doing nothing when the hospice team took over. But it is possible, and important, to apply this lesson no matter our caregiving circumstances. When my Dad’s disease progressed, and again when my husband was diagnosed with cancer a few years later, I remembered to just be. (Okay, to be honest, I put it on my to do list so I wouldn’t forget!) And it was wonderful. Yes, the mail sometimes piled up, and the sink was never clear of dirty dishes. We may have been late to an appointment or two. But the end result was the same – while the journey was so much better.
So caregiver, won’t you stop what you are doing - just for a few minutes- and take time out just to care?
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