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How Death Changes Us
December 21, 2011
How Death Changes Us

Posted by Lili Ibara

candlestickFor a while now I’ve been wanting to write about what it feels like when our clients die. It’s just I’ve never felt quite expert enough to do so. I’ve always thought writing about Death was the province of long-serving hospice nurses or philosophers. Perhaps it is. There is something though about our jobs as geriatric care managers that pulls us into the lives of our clients so intimately that their deaths change us. I think it’s important for us and for our clients that we acknowledge this.

I have vivid memories of one of my first clients who died about a year after I met her. She was fierce, having single-handedly raised a remarkable daughter despite sorely limited money and opportunities. She was stubborn, refusing to admit to debilitating spells of dizziness even when I could see her wobbling on the backless stool she refused to throw away. She could also be hilarious, especially when telling stories about the man who had left her to raise that remarkable daughter alone. Her curious trust in me gave me confidence as I figured out how to be a social worker. I miss her.

The day before she was to undergo a risky surgery she told me she was terrified of dying in the operating room. This woman, the one who wouldn’t ever admit anything was wrong, even on days when she was so dizzy she couldn’t stand, had just confessed this terrible fear to me. Her admission made me so physically uncomfortable all I could do was stare intently at the nubby weave of her easy chair. I assured her she was going to be fine, my eyes fixed on her carpet, just glancing up long enough to see her look of doubt. She ended up dying very soon after the operation, in an ICU bed, intubated and drowsy from painkillers but still able to acknowledge me with a quick smile. Seeing her there, I regretted making false assurances instead of acknowledging her fears.

A year or two later I was with a 94-year-old client in the emergency room one evening. We’d been there for hours. She had been dozing on and off and I was staring at the clock, wondering if my husband had already arrived at the new sushi place we were planning to try that night. But then she said very quietly, but calmly, “I think I’m dying,” and it jolted me back into the moment.

It seemed such an inappropriate attitude for this brightly lit triage area. How could she anticipate death so placidly amidst this flurry of staff checking IV bags, hammering at keyboards, and quickly consulting in hallways while striding towards the next patient on their lists, all in an effort to forestall illness and death?

I tried to block out the chaos of the room around us, all those beeping, blinking monitors calling out for attention, and asked what she wanted. “I’m okay,” she said, as if to reassure me, “I just don’t want to be alone when I die.” I didn’t know this woman well. I’d only visited her a few times to talk about how to arrange transportation and order medicine by mail. But here I was now and she had decided that that was enough. It was such a simple, profound lesson for me. All I needed to do was calm down and hold her hand.

As care managers we often work intensely with our clients, getting to know not just their medication lists and next dentist’s appointment but also more intimate incidentals. We learn which of their children they trust to manage their affairs and which ones cause them the most worry. We find out what they really thought about that 30-year marriage that looked so good from the outside, or the vital importance of mascara and earrings to make them feel ready to face the world. This is all part of our work.

It’s just that when you know these things about a person and then that person begins to die, it has a way of reaching beyond the tidy boundaries of a professional social work relationship. Those social work boundaries that might ordinarily keep us at a bit of a remove are a way to stake out some space for our own lives and families. More importantly the distance they create can prevent a client’s insurmountable problems from seeming insurmountable to the person trying to help. But we are in people’s homes and in their lives and there’s no way their deaths can leave us untouched. On the other hand, we are not family, or clergy, or even friends and we have no official status as mourners.

If we spend enough time with people who know they may die soon, we will hear them say “I’m scared to die,” or “I’m fine with dying but I’m worried sick about what will happen to my disabled son.” I am learning, slowly, that these conversations are more important than finishing the ten tasks on my list, or reminding the speaker about his next medication dose and getting his groceries delivered as quickly as possible. This call to slow down, pay attention, and connect, is indeed a privilege.

Lili IbaraLili Ibara, LICSW, is a geriatric care manager with JF&CS Your Elder Experts. Lili began her advocacy work in the legal world, working at several legal aid organizations including the ACLU and Texas Rio Grande Legal Aid, and also as a federal appellate law clerk. She enjoys using her advocacy background and her masters in social work to help clients successfully navigate through bureaucracies.

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