The wrong direction

My fifth day in a row at BH's house, the fourth full day since his wife and kids left for much-needed R&R, I get a call from my husband.

My husband is having trouble breathing. He's throwing up. His inhaler isn't quelling the asthma attack. "I need you."

Check with BH, check with the attendant on duty, call the attendant who is scheduled to arrive: everyone on track, everything under control, can I leave to help my man? Husband hangs on the line.

Out the door. Driving home. Cell phone, every few minutes: "Where are you?"

Hold on. Hold.

Home. Husband into the car. Head for the emergency room.

Fire on the hillside, traffic clotted on the bridge, looky-loos and weekend-escapees. Slow, slow.

Emergency room. Hand husband over to doctors. Wait. Wait some more.

Two hours later, he's stable, but they can't predict whether he'll need to stay only a few more hours or remain overnight.

My cell phone has lost its charge. If BH's attendants try to call me, I won't know.

Back to BH's house I go.

Mismatch

A doctor calls to prescribe meds. The doctor wants to know if BH is taking X (a general antihistamine) or Y (a drying agent). I read the master list of medicines that he’s taking and see neither X nor Y on the list, and I tell the doctor what is listed. She says that none of the meds on the master list are general antihistamines or drying agents, and that I should go buy X and fill her prescription for Y. I go buy X and fill the prescription for Y. The attendants and I give X and Y to BH.

The next day, I am looking at the list of daily instructions to the attendants in order to add X and Y to the list, when I see that a general antihistamine and a drying agent are already being given to BH—even though that general antihistamine and that drying agent aren’t listed on the master list of meds. That means that, in giving him X and Y the day before, we may have overmedicated him—giving him two general antihistamines and two drying agents. Overmedication can lead to rebound effects. Not good.

I compare the master list to the daily instructions and find that four medicines he takes every day aren’t on the master list.

I place three calls to the doctor. She never calls back.

Looking down

He’s very weak. He’s stress-coughing—sometimes for hours: nonproductive dry coughs, even though his lungs are clear. He prefers not to take meds that reduce stress.

He hasn’t energy to converse. He spells out essential orders—in phrases, mostly, rather than complete sentences. He answers yes-or-no questions by beeping a button on his wheelchair like Captain Christopher Pike.

His head is almost always bent forward to rest on his chest so that saliva can drain out onto the kleenex in his mouth, and his eyes look down toward his lap. He’ll raise his head sometimes to look at his computer or have spray put in his nose, but mostly he’s looking down, listening to NPR or to music . . . or coughing.

That means he rarely makes eye contact with anyone. People can get down on their knees and peer up at him, but no matter where they kneel—to the side, or in front of his chair—his eyes still point toward his lap; it’s not comfortable for him to angle his eyes sideways or up, so kneeling doesn’t usually result in eye contact, and certainly not sustained contact. His wife will bend near his face to kiss him and say loving things to him, but other people doing that causes him stress.

Isolation isn’t just a matter of staying in the same room twenty-four hours a day. And it isn’t just a matter of not conversing. Eye contact is a real loss.

At least from my point of view.

21 miles

I biked twenty-one miles yesterday. Stopped twice going up Sycamore hill.

Bike shorts . . .

New bike

I bought a bike! It's a hybrid, a Giant FCR 1. Silver and black. Lightweight. MINE.

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.

Whip

People who feel threatened lash out. People who are vulnerable lash out. People whose lives are at risk lash out.

No value judgment here. Just truth. They're trying to protect themselves.

So duck. Back off. Disengage.