Cancer Diary: I Have Time Now -- and Peace: Reckoning with the Impossible Stresses of Caregiving to an Inexorably Dying Patient
There are salt lamps glowing in the bedrooms again.
For five long months, their light bulbs burned out one by one, quietly surrendering to the dark as I didn’t have the time — or the clarity — to replace them. There was no time for anything outside the urgent, consuming task of caring for my husband Carl as he moved through the final stage of his life.
It started with a fall. A routine day, until it wasn't. Tests led to more tests, and the doctors came back with something I wasn’t prepared for — stage 4 cancers. Not one, but five: liver, lung, skin, bone, and stomach. Cancer of unknown primary. Nothing they could point to. Everything failing at once.
He lived five more months.
At first, we tried chemotherapy. When it failed, we shifted to palliative care. I say “we,” but it was me who made those shifts, who bore the weight of each medical decision, each adjustment, each indignity he faced. And it was me who stayed awake at night, while others slept, making sure Carl didn’t fall, didn’t aspirate, didn’t forget to breathe.
Carl refused diapers. So every two hours, I pulled his still-heavy body from bed to wheelchair, his legs barely cooperating, his skin like paper that bled if you so much as looked at it wrong. His appetite disappeared, but the need to try to feed him didn’t. I cooked what he once loved. Most of it went untouched. Still, I cooked again. Tried again.
Every chemo appointment was a two-hour round trip. I navigated bumpy roads and bad weather and slow elevators with a man whose pain sat right beneath the surface. At home, I managed his medications, tracked his dosages, picked up the prescriptions, talked to pharmacists, negotiated with insurance.
And I lifted him — with a Hoyer lift that mocked my petite frame and whispered cruel jokes about leverage and physics.
That’s not all. Life doesn’t pause for terminal illness. The house needed refinancing. Legal paperwork had to be found or created. Powers of attorney drafted and notarized. The family trust updated. Medical records organized and analyzed and re-explained to doctors who were seeing Carl for the first time, again and again. His mind, once sharp and strong, began to slip away — chemobrain, hypercalcemia, fatigue. Sometimes, I could barely recognize him.
We had two disabled children depending on us. On me. They still needed food, routine, help with toileting, comforting, explanations. They couldn’t be paused or postponed. My hours belonged to them too.
And now — Carl is gone.
And I have time.
Time to change bulbs in forgotten salt lamps. Time to sleep through the night. Time to brush my teeth without listening for a call. Time to sit and stare at nothing and not be needed for fifteen minutes.
Time for laundry. For beautifying the yard. For collecting baskets of lemons and apples from our trees.
But none of these baskets will ever be fuller than the baskets of remorse and regret I carry — that I just couldn’t keep up with it all. We only qualified for hospice ten days before Carl died. I was already past the edge of burnout. My physical and emotional energy were gone, and sometimes I snapped. I lost it. And that made me feel ashamed — how could I lose patience with a dying man? But he was, by my exhausted standards, sometimes unreasonably demanding. The truth is: he needed more than I could give. And now, I don’t yet know what to do with all these baskets of emotion.
That peace is real. So is the grief.
But I don’t want to dwell only on the sorrow. What I want to name, what feels important to name, is the cost. Not the emotional price of watching a loved one die — we all expect grief. We all expect tears and mourning. But few talk about the violent dismantling of your life, your body, your sanity, when you become a full-time caregiver to someone who will not survive.
We praise caregivers. We don’t support them. We don’t tell them it’s going to be this hard. That it’s going to hurt in their spine and their wrists and their knees. That their hair might fall out too — not from cancer, but from stress. That the isolation will be so total, so unrelenting, that they may forget how to speak in complete sentences that aren’t medical updates.
There is no guidebook for this kind of caregiving. There’s just survival.
And now, here I am. Surviving.
Now, the salt lamps glow again. Quiet, steady, warm.
They are small beacons in this slow return to myself.
For other posts about Carl Leaver, click HERE.
For other posts on dying, click HERE.
For other Cancer Diary posts, click HERE.
Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI Press is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The CCC is expanded and updated weekly. As part of this effort, each week, on Monday, this blog will carry an informative, cancer-related story -- and be open to guest posts: Cancer Diary.
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