Articles about care-taking usually focus on the physical challenges of helping an aging or disabled family member: dressing, feeding, driving to doctors appointments. But in the decade since my husband suffered a stroke and I’ve been his caretaker, it isn’t the physical demands but the mental ones that have proven onerous.
Like many mothers, I am the family’s logistical expert, juggling in my head soccer practice schedules, dentist appointments, and school lunch fees. Then there’s the to-do list that most couples share: arranging home repairs, preparing taxes, talking to teachers, paying bills, helping with homework. Single parents know the burden of doing all that, right?
It’s not those tedious, everyday organizational challenges that make me crazy, endless though they sometimes feel. Instead, it’s the whole range of extra incidents — mostly unpredictable but a regular part of living with a brain-damaged family member — that bring the stress and terror into my otherwise mundane days.
• The time, shortly after he got home from the rehab center, that he threw away every piece of Tupperware because the containers didn’t match the lids.
• The time he chose a new dentist and proceeded to get $2,000 of work done without mentioning it to me.
• The time his recumbent bicycle broke down on a remote path and he called me to rescue him, but because of aphasia could not explain where he was. In my haste to find him, I managed to hit a kid on a bike. (The biker was fine; I was not.)
• The time he stopped taking his allergy medicine because it made him sleepy, and ended up wheezing and gasping in the ER, needing half a dozen more meds and half a dozen extra appointments to learn how to breathe again.
• The time he decided to stop taking his anti-seizure medication because it made him feel tired, and he suffered a full-fledged seizure while our 15-year-old was home alone with him. That ended in an ambulance ride and an overnight stay in the hospital.
• The time he threw away a year’s worth of speech therapy receipts, just because. Taxes? What taxes?
• And the many, many times he has had something important to tell me — from the exact place in the house where the dog peed, to his desperate need for a new leg brace — but he couldn’t come up with the right words. I suck at guessing.
Staying one step ahead of him, reacting to various crises, and summoning the patience to wait out one more tortured story telling — these are the truly exhausting parts of care-taking a brain-damaged spouse. Making dinner — now that’s easy.