In six months I’ll turn 30. I’ve seen friends in my situation start panicking right about now—a bit of an early-in-life reflection back on what they accomplished. Me, though, I’ve been doing that for almost a decade already.
Five years ago, on a Friday morning while sitting at home with my dad, he started coughing heavily. This wasn’t unusual; he’d been diagnosed with lung cancer a couple years earlier and had his ups and downs. This cough was heavier though, and soon I found myself in the driveway behind an ambulance, getting into my car while my dad and I thumbs-up’d each other as they closed the door. I got in my car and followed. The next 72 hours I spent with him in the hospital were the most up and down of my life. He was lucid and we shared stories, he slept for hours and seemed to be slipping. Monday morning, my dad passed away. I couldn’t see it coming. I eventually coped with the loss and it shocked me into action—I sold everything and moved to San Francisco. I got a job in tech.
Back then I was picking up every caregiving skill as I went. This was tough, as I didn’t know what I didn’t know.
I didn’t know if, as a son, I should be taking care of my dad (wouldn’t doctors do that?). I didn’t even know the term caregiving (sounds like senior homes?). At the speed with which I was discovering the new—what cancer is, how it affects someone, how it affects their loved ones—my brain had no extra bandwidth to parse anything else.
I’ve come to realize this is the nature of caregiving. Like parenting, caregiving is something you pick up as you go and just do your best. There’s no such thing as perfect caregiving.
Since then I’ve cared for two more family members: one with cancer, and one with congestive heart failure and diabetes. They are very different. But they’re also very similar. The emotions are the same. We still all go to the doctor for regular visits. I’ve seen first-hand how we as a family are held responsible for finding new doctors, coordinating the communication of results from one doctor to all the others, and being the arbiter and point of failure for a massive amount of communication and coordination. It is crazy. It is broken. It is unnecessary. And that’s just the tip of the caregiving iceberg.
I am a better family caregiver now than I was the first time.
I think back to when I was caring for my dad and how bad of a job I did, but at the time I (and our whole family) was doing my best. You can’t care someone into a cure—caring harder wouldn’t have saved my dad. But just even having the emotion of care in my heart saved the final days and months we had together.
I’m young but I’ve seen enough to know that life is for living. It never has stopped bothering me that I have the wisdom and perspective I have thanks to losing a family member. But I recognize loss is a central element of the human experience and I’m glad I had as much time and control as I did. It has been a gift that helps me enjoy every day a little bit more than I expect I would have otherwise.
Resources for caregiving are rapidly advancing, which is crucial as more of us develop more conditions and more of our family members are pulled into service. Communities like The Caregiver Space are pushing that forward. I wish I’d known I needed a resource like this those many years ago. I’m glad I at least know now.
Most of all I’ve learned one thing: It’s never too early to care. It’s never too late to learn how.
Tyler didn’t mention it in his piece, but his experience as a family caregiver motivated him to create an app to help manage medical records. Prime pulls all of the different electronic medical records into one place and share them with your family members. If you’re taking care of someone who sees multiple doctors, it’s a great tool. Check it out at UsePrime.com. – Cori