This week I dug into the vaults...this is a piece that I wrote in 1996 (I know!) about a particular shift when I worked as a caregiver at a family care home for people living with AIDS in North Carolina. The disease was like a tornado then, and strides were just beginning to be made toward managing it. As I revisit this era, I'm reflecting on how far we've come since then and also how far we have yet to go....
Someone must have died, I think, pulling into the driveway at 8 a.m. on Friday.
There are way too many cars; that’s always a giveaway. I’m suddenly anxious, not knowing what I’m walking into. But as a caregiver for people with AIDS, you never do know what to expect. You only know it’ll be a ride smack dab into the center of chaos.
When I walk in the door of the Chapel Hill “AIDS House,” Craig is stretched out on the couch, glassy-eyed, ready to hand me the reigns. “Hi, sweetie,” he says. “Come give me a hug.” Craig kisses me on the cheek. Wally is dying, he says, and his friends have gathered around to keep vigil.
Craig and I have been through this before, and yet it’s all new. Every person’s transition from life to death is different. The pain is different, the fears are different, the level of acceptance is different. So I know I’m going into this as a beginner; Wally will have plenty to teach me before it’s over.
We walk back to Wally’s room. It’s been a week since I’ve seen him. He looks like a baby bird in a nest, huddled under blankets and buffered on all sides by big pillows. I kneel beside him and take his hand. “Hi, Wally.”
He opens his eyes and smiles. “I waited for you to come,” he says.
“I’m glad you did.”
My throat is closing up. We sit for a minute in silence. Wally and I haven’t become especially close, but we’ve had some meaningful talks. Our time together these past two months has been easy and comfortable, free of the awkwardness that sometimes accompanies a new resident.
When Wally’s friends come in to chat, Craig and I go to the caregivers’ room to do our changeover. Craig is exhausted. We have a new resident who needs a dressing change three times a day. Another is semi-paralyzed, non-ambulatory and in diapers. We have three others with their own special sets of needs. And then there’s Wally.
Craig gives me the update: Wally hasn’t been taking his meds for the last week. His morphine has been upped to two milliliters every two hours for pain. When you give it to him you have to steer the dropper along the inside of this right cheek and get it as far down this throat as possible; the thrush has gotten so bad that he gags if you do it any other way.
Changeover done, Craig heads home to sleep. The phone doesn’t stop ringing all day. Visitors come, go, come back again. The residents are attended to. In the midst of it all is Wally: in and out of sleep, in and out of dementia, in and out of fighting for his life.
When awake, he smokes continuously. This makes me crazy, but I can’t begrudge it: After all, this is one of the last choices Wally has. He can choose to eat, but he’ll throw it up. He can choose to get up and visit the bathroom, but he’ll go all over himself before he gets there. He can still smoke, though, even if he chokes on every drag.
Wally and I argue about diapers. He says he won’t wear one, and rips it off. I explain that it’s just a precaution, that it’ll help him get to the bathroom when he needs to go. I remind him how he unknowingly went while he was asleep, how we don’t always make it to the bathroom on time.
“No,” he says.
I pull out my ace: “What if you ruin your favorite paisley robe?”
Wally glares at me. “OK!” he yells.
We put another diaper on. He is visibly embarrassed. “I’m only 27,” he says.
“I know,” I say as I stroke his hair, struggling for a way to make it better. “I’m sorry.”
The doorbell rings. It’s Wally’s mother and two aunts. I’ve never met them before, but you can’t miss the resemblance between Wally and his mother. She’s shorter, though, and wears a navy polyester sweatsuit with big appliques on it--an outfit her son would not be caught dead in.
The visitors make me angry. Why do people flock to the side of the dying instead of celebrating them while they’re alive? But I’m cordial, expressing my sympathy as Aunt No. 1 unpacks needlepoint from an old macrame bag, plants herself on the couch in front of the TV and flips through the channels. She finally settles on Jerry Springer. Great.
Seeing Mom and Aunt No. 2 heading toward Wally’s room, I rush ahead to make sure he wants to see them. He says yes; he has things to say. I close the door and leave them.
When I check on Wally after supper, he’s sleeping, his mother by his side, Aunt No. 2 sits stiffly in Wally’s antique chair. His breathing is shallow now, his eyes half glazed over with “that look.” He’s leaving soon. When I tell the family I’ll give them some privacy, they ask me to stay. I hate this; I hate being a witness to their guilt. But as we sit in silence, my anger gives way to compassion. Wally’s mother touches his face, gingerly at first. Tears stream down her own face. She is doing the best she can. She probably always has. Besides, who am I to judge? I don’t know their story. At least they’re here.
They stay till midnight. Wally’s mother practically has to be carried to their van. Aunt No. 1, finally roused from the couch in the other room, says they’ll return tomorrow. Would I call her if Wally dies in the night, so she can tell his mother herself? Of course.
Wally lapses in and out of consciousness all night. Most of the time he’s in a coma; other times, he suddenly decides to get up and rearrange his room. Around 3 a.m., he sits up and announces that he isn’t taking any more morphine. He wants to get back on his regular medication schedule, he says. He is not giving up.
I tell him I’ll do whatever he wants. But I do try to talk him into continuing the morphine for the pain.
“You’re trying to kill me!” he barks.
“I am not trying to kill you, for Christ’s sake. I just don’t want you to hurt.”
“Well, I’m not hurting and I want you to leave me alone.”
I resist the urge to reason with him. You don’t argue with a dying person. I turn to leave, then stop. Wally is staring at me. “I’m scared to die,” he says. “I’m not ready to die.” His eyes well up. He’s kept up a strong front for so long.
A professed Agnostic, Wally starts to talk about God. Is it too late to strike a bargain? Will God be there to greet him? I hold his hand, assuring him he’s loved, telling him I’ll stay with him if that’s what he wants. We’re interrupted by Kim, his best friend for years. Wally asks to be alone with her. I go cook breakfast. It’s 4 a.m.
By 7 the next morning, I’m fading fast. It’s been a long night. One of the residents fell out of bed twice. My body aches from transferring another from bed to wheelchair to toilet and back again, and from helping Wally up and down. I’ve been running for 24 hours, with nine more to go.
The day goes by quickly: Wally decides he wants his morphine. His mother and aunts return, Aunt No. 1 making a beeline for the remote control. Today Wally’s mother is a wreck, crying hysterically, barely able to walk. She asks for some time alone before going to see her son. Meanwhile, Wally’s friends are losing it. They feel guilty because they’re tired and frustrated, ready for him to die.
Finally, it’s 4 p.m., and Sarah arrives to relieve me. I almost weep with relief as I pack up my car and give Sarah the updates. After our changeover, I say my goodbyes to each of the residents, saving Wally for last.
I know this is truly goodbye. I kiss Wally’s forehead, tell him I love him and I’m going home. He says he loves me, too, and he wants to know: Can we continue our conversation on my next shift? I tell him it’s a date.
