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Rescue Line — Connecting With Clients Lost in a Storm
By J. Scott Janssen, MSW, LCSW

What am I doing here?

As soon as one part of my mind asks that question while I watch Betty, an older woman with advanced dementia who is staring wordlessly into space, another part responds: You’re here because right now, right here, there is no more important place to be. The last thing Betty needs is to have her hospice social worker carrying on an internal dialogue about whether it’s worth his time to sit with her.

Betty’s eyes remain unfixed, apparently uncomprehending. I’ve been talking about her life, repeating stories her sons have shared about her marriage, children, career as a journalist, how she loved the ocean, sailing, crossword puzzles, and the New York Mets. Has dementia really washed it all away? Is there any point in sitting beside her, holding her hand, and telling such stories? Is there some place—any place—left inside Betty where a foothold can still be found from which to connect, if only in the moment, and affirm the enduring value of her life’s journey?

Paths to Connection
Finding such footholds and connecting with the essence beneath—life force, inner voice, spirit, will, soul, whatever you like—has been a core part of my clinical practice for years. Even when buried beneath depression, anger, or fear; even when obscured by the effects of trauma or social conflict; even when clients feel disconnected from this inward place of wisdom and strength, there always are ways to get there.

There are countless channels that can be followed into this place. These channels may come in the form of affective, cognitive, behavioral, somatic, relational, or transpersonal experience. They may appear as metaphors and paradox, enhanced mindfulness or moments of sudden unexpected insight. They may emerge as life stories seen with new lenses or fresh language, allowing someone who is dying to alter personal narratives about themselves and the world around them. Sometimes channels may be found in giving or receiving simple kindnesses or in the quiet space cleared by the imposed convalescence of an illness that forces us to be still.

There is suffering, yes, and it is good to offer a safe space to explore and process this. Most social workers gather questions and therapeutic strategies for helping people give words and expression to their suffering—the emotional pain, doubt, fear about the future, regret about the past—and frame these challenges within the larger story of their lives—what they have learned, wisdom they have gathered, relationships they have made.

Regardless of how intense the suffering, there are ways to move toward that inner place of wisdom and begin hearing the voice of our authentic self, a voice that is often drowned out by a chorus of other internal voices more easily hijacked by life’s triggers and challenges, pulling us out of the present moment and whatever possibilities exist there.

How do you do this with someone who is globally disoriented, someone who is staring into space as I hold her hand speaking what is starting to feel like a monologue with no audience? Amid the hectic schedules, high caseloads, and seemingly relentless drive for the “optimal productivity” so much a part of healthcare these days, patients like Betty can easily get lost in the shuffle. Some days as I struggle to make multiple visits in different locations, I also wonder if it makes sense to sit like this. How can I sit here when there are so many other patients I have to see who can actually carry on a conversation? Is there really anything left of her inner self?

Inviting Voices of Loved Ones
If one of her sons were here, I’d know what to do. I’d get him talking about her, knowing the kind of profound moments that can open up when you invite a son or daughter to speak, tell the story of what their parent’s life means to them, what they remember and will carry. Often during such conversations, with the help of some simple questions and a listening ear, we will begin what I call “summoning the voice” of a parent no longer able to speak for him- or herself and allowing this voice to animate our discussion.

Maybe her son and I would start by talking about details from Betty’s life then gently move into what the subjective experience of these events means to him. Maybe a theme would emerge. The last time I sat with her oldest son, he explored the paradox of Betty’s fierce protectiveness and willingness to sacrifice anything for her children on the one hand and her often icy reserve and difficulty expressing affection on the other. After reflecting on what this was like for him, we pondered what it may have been like to be in Betty’s shoes.

At one point I began asking him questions to tap into the place where he held her voice, inviting it into our conversation: If she could come back from this confusion for five minutes and you could ask her one question about all this, what would it be? Go into that place (I touched my heart) and tell me how she would respond to that question. What would she say? What do you think she would tell you about all that’s going on now? (I motioned toward her as she looked out the window.)What would she want you to remember when she is gone? What would she say about the life she’s lived?

There was a moment near the end when her son was clearly feeling something. I asked if he felt comfortable sharing what it was. He swallowed hard and managed one word before the tears came: “Love.” At that moment Betty turned toward him and, in a display of life force revealing itself, said, “I love you too. Don’t cry.” Then she faded back into the haze.

Remembering such extraordinary moments helps me break the trance of diagnostic labels and medical jargon about “dementia,” “altered consciousness,” and “deficits in cognitive function and comprehension.” These can lull one into the belief that Betty has completely checked out and there’s no point trying to connect—that all that remains is to see to her safety, medication management, and personal care.

Beyond Empirical Evidence
Despite all the research, systematic observation, and data that have been accumulated, helping professionals really don’t know what it’s like to be lost in the shadow of dementia and what messages may be getting through to a patient. The last chapter of life is challenging enough as patients and families deal with intense thoughts and feelings and try their best to focus on what’s most meaningful as the time of separation nears. When this time is complicated by advanced dementia, the challenges become even more formidable. If there ever was a time to try our best to touch whatever life force may still be trapped inside, it is then.

Somewhere beyond language and conventional channels there must be a way to send messages in the direction of whatever core part of Betty’s inner world remains. One of the paintings on Betty’s walls is of a ship in stormy seas. To the east there is the intimation of land, the coastline revealed only in a few fragments jutting out beneath the storm clouds. I’ve wondered about what it would be like to be standing on the coast knowing someone was out in the waters in trouble.

One of the oddities of being a social worker with a passion for American history is that things pop into my head that connect my life as a social worker with my interest in history. In this case I had an image of a nineteenth-century life-saving station. In the late 1800s the U.S. Life-Saving Service was established to help travelers along the Atlantic coast. If there were a life-saving station on the coast, rescuers could have hauled out the beach apparatus and fired a rescue line. Once a line was secured, passengers could be pulled over the waves one by one in a moving platform referred to as a breeches buoy.

Though it may sound straightforward, it was anything but that. Imagine the effects of deafening hurricane-force winds, distance, and pouring rain. Imagine flooded beaches, wet gunpowder, and impaired visibility. And imagine the clock ticking. I wonder what kind of rescue line might make it through Betty’s storm to let her know she is still important and not alone.

The L-Word
I have an idea about this, though I haven’t often said it out loud. I think the rescue line for this job is love. If you use the L-word among some folks in healthcare, they’re liable to think you have “boundary issues” or that you are confusing your needs with those of the patient. Some of my social worker friends might suspect me of having an acute countertransference reaction, though most of them, I think, will understand what kind of love I mean. The ancient Greeks, after all, had at least five words for different kinds of love. One of these was agape, which is hard to translate exactly but whose original meaning is often rendered as selfless, altruistic love, the kind without conditions or demands for reciprocity.

When we strip away all the jargon and demands for best practice protocols, isn’t this kind of love at the heart of our work? Isn’t this what Carl Rogers was getting at for decades, using words and concepts like warmth, genuineness, and acceptance? Sure, he’d clean it up for more clinically minded crowds and maybe substitute words and phrases such as “accurate empathy,” “congruence,” and “unconditional positive regard,” but wasn’t he really talking about love?

And what about all the outcomes in research that time and again reminds us it is not the psychotherapeutic model that matters most in successful psychotherapy but the client’s experience of the relationship with the therapist? Does the client feel accepted even when he or she may not accept him- or herself? Sometimes I wonder if there is a great secret at the heart of all good counseling, and the secret is it’s really all about love. I mean in no way to diminish the importance of skilled clinical practice, but are these not, when they are employed well, employed in love’s service?

In the end it really doesn’t matter whether Betty remembers five minutes from now that I took the time to learn something about her story and sat holding her hand. What matters is doing so here and now. What matters is kindness and the intention to feel and express love—warmth, genuineness, and unconditional acceptance—without requiring any evidence that these messages of love have been received or needing any reinforcement to continue sending them.

Many social workers and other healthcare professionals already understand this, though amid stressful days it is easy to forget when there are so many forces, both structural and philosophical, pulling in the opposite direction. Sometimes I worry that as agencies and institutions become more concerned with the financial bottom line, time management, and “efficient staffing ratios,” the deck is increasingly being stacked against such moments of connection and affirmation. I worry clinicians will increasingly lose the ability to track the life force that remains in patients like Betty as they focus narrowly on material concerns related to physiology and disease progression, becoming more infatuated with the latest medications and “behavior management” strategies rather than trying to connect.

I worry helping professionals may lose the trust that somewhere underneath the fog of dementia there remains an enduring inward spark of being —spirit, soul, inner self, higher self, life-force—with which we may still connect and send messages of love. This same trust holds for clients and patients lost in the fog of depression, unmoored by debilitating anxiety or mental illness, and for those who push every button helping professionals have. Maybe love is both the nature of this inward place where life remains intact as well as the way such professionals make contact with this place.

I smile at Betty. Jodi, the hospice chaplain, arrives and sits with us. Jodi knows the secret about this work. She knows the story too. She knows about the crossword puzzles and the Mets, that Betty’s father was a minister and that she grew up singing hymns in church. Jodi also knows that for patents with dementia, music that was once significant can be a passageway into the place about which we have been talking.

Jodi begins singing what used to be Betty’s favorite hymn—“It Is Well With My Soul.” By the end of the first verse, Betty seems more alert; by the end of the second, she is moving her mouth. I look at the many photographs on Betty’s walls; each seems to tell a story. Betty smiles ever so slightly and for a split-second she resembles a younger woman in several of the old black-and-white photographs. I think about the moment with her son when she told him she loved him.

As Jodi sings, I find myself humming along, feeling renewed trust that whatever the winnowing blade of dementia has taken, there is a place deep within that the blade will never touch and that there is a way to reach that place.

— J. Scott Janssen, MSW, LCSW, has been a hospice social worker for 20 years and currently works for Duke Hospice in Durham, NC. He is author of the book The Dawn Is Never Far Away: Stories of Loss, Resilience, and the Human Journey.