The document I carry out of this experience — not the folder, but the understanding in it — is that named things have more power than unnamed ones.
For twelve years, what I was doing was called “living with mom” or “helping out” or “keeping an eye on things.” It wasn’t called what it was, which was primary caregiving, full-time management of an elderly person’s medical, logistical, financial, and personal needs, with full-time availability requirements and approximately no established compensation.
If it had been called that from the beginning, the invoice might not have arrived.
I don’t blame the language entirely. I also didn’t name it. I accepted the polite euphemisms because naming it felt like complaining and I didn’t want to complain and I didn’t need the external validation if I was confident in what I was doing.
I was mostly confident. Mostly.
The other-times, the times when I wasn’t, were the times when Daniel’s invoice could get purchase.
Those times are less frequent now.
THE YEAR BEFORE
I want to go back to the last year, because the last year deserves to be said.
Mom’s decline in the final twelve months was faster than the years before it. This is the way of things, I know. The body doesn’t decline at a steady rate; there are plateaus and then there are drops, and the final year is often one long drop interrupted by plateaus that are harder to sustain.
She spent three weeks in the hospital in April, the spring before she died. A fall, a hip fracture, the surgery that followed, the slow and imperfect recovery. I was there every day. Not because hospitals require family to be there — she had nurses and aides and a competent medical staff — but because she needed me to translate, in both directions, between what the medical team was doing and what she was experiencing.