Daniel got the holiday version of her. He got her when she was making an effort, when she was glad to see him, when she had energy to perform competence. I got the Tuesday afternoons and the 3 AM falls and the days she didn’t want to eat and the appointments she was scared about. I got all of it.
I don’t want that to sound like a complaint. Most of it I would not give back. But I am giving a complete account now, because a complete account is the only one that means anything.
THE MEDICATIONS AND THE MANAGEMENT OF SMALL THINGS
One of the things that is invisible from outside a caregiving situation is the administrative weight of it.
My mother, in year eight, was on seven prescription medications. Two of those had been changed in the previous eighteen months due to side effects or efficacy concerns. One of them, a blood pressure medication, required periodic monitoring that meant keeping track of when she’d had her last check and what the numbers showed. One of them had a known interaction with a common over-the-counter antihistamine that her allergist and her GP had not communicated about and that I caught by reading the insert.
I kept a binder. The binder had her medication list, current as of the most recent update, with dosages and timing and prescribing doctors. It had her diagnoses, in plain language and in clinical language. It had her insurance information, the number for the specialty pharmacy we used, the name and contact information for each of her doctors, and my cell phone number listed as EMERGENCY CONTACT with a note underneath saying I MANAGE ALL MEDICAL COMMUNICATIONS.