by Pastor Lee Schott
Lately, I’ve been struck by how many of the people I know are caregivers.
Some are walking with family members living with dementia. Some are helping parents navigate cancer. Others are supporting loved ones with Parkinson’s disease, chronic illness, mobility challenges, or other realities that come with aging. That’s a lot of people keeping track of medications, managing appointments, giving rides, advocating with doctors, making difficult decisions, and quietly rearranging their lives around someone they love.
Most of you know I became part of this club fifteen months ago when my husband was diagnosed with Stage 4 pancreatic cancer. But this isn’t the first time.
Yesterday marked the fourteenth anniversary of my mother’s death from cancer. She and my dad died three weeks apart—both of them after weeks in hospice care. It was a less intense caregiving experience than my current one; I lived 45 minutes from their home. Still, that responsibility felt heavy through that whole season. So many trips to Prairie City; so many phone calls, eventually with hospice.
At one point my mom told me she needed me to tell Dad that he was dying. It had been weeks since he went on hospice. He said to me, that Sunday, “I can’t figure out why I don’t feel better.” Which explained Mom’s request; she couldn’t bring herself to explain it. I did—because that’s the kind of thing you do as a caregiver.
How many of us have known those experiences—sometimes for weeks, often across months, or years.
Even with that personal experience, and even with the ways I see many of you offering care to loved ones, I was shocked recently to read a statistic that 1 in 4 adults in the U.S. are family caregivers. One in four; wow! That’s 63 million Americans.
For many people we all know, this is not an abstract statistic. It is daily life. It carries a great deal of invisible labor. There is the mental load of keeping track of everything. The constant recalculating as circumstances change. The effort of staying steady when the person you love is struggling. The anticipatory grief that hits long before any goodbye.
Many caregivers move through the world looking composed while carrying far more than most people know.
It’s not always family members, by the way. This work extends past blood and marriage to friendship, and neighboring. Relationships we might call “chosen families” often bring people into this work in unexpected and amazing ways.
And, importantly, caregiving is not only work. It is also love.
We do this work not simply because it is necessary, but because we love fiercely. We love the spouse with whom we have built a life. We love the parent who once cared for us. We love the sibling, child, friend, or neighbor whose dignity matters to us, who has become part of us. Love is what keeps showing up. Love is what helps us learn new vocabularies, ask hard questions, sit through long appointments, and begin again each morning.
The labor is real, but so is the devotion underneath it.
I see so many of you doing this hard, loving work. I think God smiles to look upon you, and me. I also think God longs, as I do, for medical and insurance systems that offer a more complete level of support and less frustration with paperwork and delays, and physicians in a hurry. This overflow of caregiving work stems in part from systems that require more advocacy than they once did.
In the meantime, I hope you caregivers reading this are finding places to go with your exhaustion and your questions. There are many support groups, caregiver communities, and practical resources for people doing this work. I bumped into a podcast called The Cancer Caregiver in which its host, Charlotte Bayala, often puts into words many of the things I’m feeling but couldn’t quite see. You might find it helpful even if your caregiving is in a different vein. We need voices like hers to accompany our days and nights.
Early in the months after my husband Dan’s diagnosis, I found myself saying, frequently, that I was “fine”—to many of the inquiries that came my way from family, friends, some of you, about how I was doing. I knew that was an incomplete answer, as did the people to whom I said it(!). I appreciated Charlotte Bayala’s advice, in a timely episode of that podcast, that normalized my response.
Bayala helped me realize that both those things can be true. We can be “fine,” in a way, even as we’re engaged in this hard work. “Fine” in the sense that I’m dressed and sober and getting my most important work done—at home and at the church. “Fine” in the sense that I’m not a sodden mess, at the moment, even if I was a few hours earlier. “Fine” in the sense that there’s no immediate crisis, even if all this is tiring and disorienting and leaning into unspecified grief. I was glad she gave me permission to say “fine” because it is, sometimes, interestingly, importantly true.
And it is also true that sometimes we need to say, “I need help.” “I just can’t.” “I’m exhausted.” Whatever it is that is also—deeply–important.
If you know someone who is caregiving, do not assume they are fine simply because they are managing. Reach out. Check in. Offer specific help. Tell them you see the love in what they are doing, and remind them they are not alone.
Sometimes the holiest thing we can do for one another is make the burden a little lighter.
