Ten days

In the past ten days, I've spent nine at my brother's house--sometimes around-the-clock for days at a stretch, and sometimes for four hours or so--helping care for him while his wife and kids are out of town. My sister helped too, staying round-the-clock on the days I couldn't.

In a normal week, when his wife is home and there's no crisis or doctor's appointments or other special need for our help, my sister and I each do just one shift alone with him (me on Monday, and my sister on Tuesday). The rest of the time, paid attendants care for him twenty-four hours a day. During the period his wife was away, my sister and I each did shifts alone, and we helped the attendants when necessary during their shifts.

Sometimes he was doing okay, so the attendants handled nearly everything without our help, except for showering him or getting him onto the toilet, and sometimes getting him into or out of bed. Other times he was in distress, so we helped the attendants for hours on end: suctioning him, changing the kleenex in his mouth every minute or so, repositioning his limbs, translating his communications on the word sheet, plugging, unplugging, cleaning, preparing . . .

One attendant didn't show up for her shift (car trouble), so I did that extra shift alone. Several attendants showed up late, so my sister or I filled those gaps.

In between we ran to the store to buy boxes and boxes of kleenex, vinegar, waterproof medical tape, wet wipes, and various meds, consulted with two visiting nurses, and wrangled with the pharmacist and the doctor about prescriptions. We wrestled with dilemmas, weighing positive therapies against their negative effects: the nasal steroid that prevents his racking cough also compromises his immune system and encourages the dangerous thrush that coats his throat and mouth; the papaya juice that thins the thick, choking saliva also encourages the thrush.

Twice we got away to ride bikes. And I spent hours doing jigsaw puzzles on the dining room table, sorting pieces in silence like Susan in Citizen Kane.

The only time my brother drove his wheelchair out of the master bedroom/bathroom area was to greet his wife and kids when they returned home.

Yesterday, I crawled off to my house to be with my husband and cats. Today I'm going back to my brother's house to do my regular Monday shift.

That will make ten days out of the past eleven.