There are no emergencies

URGENT! SOCIAL WORK NEEDED ASAP.

That’s the email subject line I received a few weeks ago, on a Monday morning, of course. My body reacted before I even fully digested the words: I could actually feel my blood pressure rising. I believe I even said NO, out loud, to my phone.

This is not the first time I have seen this subject line, of course. In my eleven years of social working, some version of it has been deployed for any number of reasons: someone wants to send their loved one to rehab against their will (not a thing); someone’s stairs are falling down inside their home and they think the city should fix it (maybe a thing but good luck); a family has deep, ongoing, intergenerational trauma that can only be fixed with literal years of internal family systems therapy but actually one of them is dying and so everything needs to be fixed within the next three to five days (this happens monthly in hospice; when will we learn??). Use your imagination to think of the most complicated and devastating stories and then imagine someone (a doctor, a nurse, a dietitian) saying, “oh, the social worker will fix it.”

Let me change your expectations: the social worker can’t “fix” anything.

I don’t mean to sound flippant here. I guess I should be flattered that there are people who think that someone with an MSW will possess the mysterious magic answer that has eluded everyone else. And if I’m being honest, that’s partly why I chose this profession: I wanted to help people. I wanted to make people’s lives better. But the thing about this work is that there are no magic answers. And there are no emergencies. There are huge, frustrating, systemic barriers to helping real people in real time but no amount of “urgent/emergency/ASAP” email subject lines can fix those.

Which is not to say social workers can’t be helpful! We can be; we are. But I have found that maybe 20% of my job is explaining how why I can’t help. I hate those moments when they happen with patients; I hate them even more when they happen with my co-workers. It’s my own ego that gets in the way here: I don’t want my non-social work partners to think I’m bad at my job, or worse, lazy. I don’t want them to stop asking for my opinion, for my expertise, for my help. But I also cannot lie. Some problems are not fixable. And—I will be saying this with my dying breath--there are no social work emergencies.

When I got that email, I had my mini temper tantrum and then I took a deep breath and called my supervisor. We came up with a plan, which I shared with the family in need. And then I don’t know what happened. Because that is the other piece: all of these issues—the rehab placements and falling down stairs and troubling family dynamics—eventually they get solved. We don’t always get to hear the end but there is an end, every. Single. Time. It bears remembering that we are just part of the process, not the process itself. There are, as always, no secret answers except to keep moving and helping and breathing; there’s no rush.

In defense of the six minute visit

This is in defense of the six minute visit.

There is a kind of cold call aspect to my job that has taken years for me to accept with grace and poise. When I explain to patients and families that I’m calling to offer emotional support, some people are immediately hesitant. I’m sure this is partly because of the way we view mental health in this country but that’s not the point of this particular post; suffice it to say, people are on guard when I explain why a hospice social worker is offering them a visit. The nurse, the home health aide, even the chaplain: their roles are very clear to patients and their families. But when I say that I just want to talk, that makes some people feel weird.

So over the years, I’ve become practiced in how to get people to talk to me, a stranger. (And, since the pandemic, a stranger wearing a mask, which really hinders the non-verbal cues. But again, I digress).  When I see a new patient, which I do once or twice a week, I have a kind of game plan: I start with an informal list of questions that I offer to my patients and their families. They range from the mundane (where are you from originally?) to the thorny (what are you afraid of?). Sometimes those questions lead to a lovely, rapport building visit and I feel I’ve done something useful. Other times though, I’m not welcomed to stay. I don’t mean I’m unceremoniously kicked out; it’s more that it becomes clear to me that the patient or the family do not want to talk to me. I am, after all, a stranger, if a well-meaning one.

At a recent visit, this exact thing happened: there were introductions, I explained the purpose of my visit, and the patient’s adult children very kindly thanked me for coming and then said they were fine and I should feel free to hit the road. So, after only six minutes of standing in the living room, I left. The patient was hours from death; the family was all present and all on board with hospice philosophy. They had funeral plans, they were following the medication regiment, they were making jokes about death (a very solid coping mechanism). They really and truly did not need social work intervention.

And yet! My critical inner monologue kicked in as soon as I began the walk back to my car: six minutes! That wasn’t long enough! I did something wrong. Maybe a better social worker would have pressed. Perhaps a better social worker would have explained in greater detail what the visit was for. Was I distracted? Burnt out? Having an off day? I could have asked to stay, I could have insisted on seeing the patient with my own eyes, I could have… completely alienated a lovely family who made their needs known to me the moment I walked in the door.

Because that is the thing about this job: you have to have an innate ability to both read the room and find the places to push. Sometimes there are no places to push. There are no weak spots or cracked open doors to lean against. Sometimes I have to trust my instincts that I am an unwanted guest and get out before I start to cause harm. That family did not need me. Six minutes was plenty of time for them; why shouldn’t it be plenty of time for me too?

May her memory be a blessing

There have been a lot of deaths recently. Maybe that sounds strange. Of course I’ve had a lot of patients die; I work in hospice, after all. But, as any medical type person can tell you, sometimes deaths come in clumps. When there are so many so close together it feels like whiplash. Because in the meantime, as patients are dying, I’m getting new referrals every day. I feel like some kind of hospice robot: “Hi, I’m Elizabeth, I’m a social worker from hospice, I’m just calling to introduce myself…” The weight of all this loss does pull me down sometimes but more so, I’m afraid I will lose some sense of importance in my work. That I will become numb to the endless death as a way of protecting myself but as a result, I will also lose some empathy.

But yesterday I lost one of my favorite patients. At the beginning of my practice, I would have been too afraid to name her that way; I thought you couldn’t have favorites. But my very wise hospice preceptor told me at the beginning of my hospice career that “one out of every hundred can really get to you; more than that, you’ve got a problem. But you’re allowed one in a hundred.” I keep those words close to my heart for days like this. The patient I lost over the weekend was one of those hundred, the first one in a long time, in fact. Her death really hit me.

That’s hard to say, honestly. It’s hard to explicitly acknowledge my grief when I lose a particularly dear patient. I suppose it’s because I’m afraid that I’m too close or burnt out or not doing it right. It doesn’t happen with every patient, of course; that would lead to burnout. But when it does happen, when I lose a patient I particularly liked or even loved, what should I do? How can I memorialize a loss that isn’t really mine? The waves of death have numbed me a little of the years but then this lovely lady died and it knocked me over a little. It reminded that I’m not actually a robot. I am, it turns out, just a person—a person who sometimes misses patients who have died. I know they are remembered by the people who loved them but I want to remember them too. I want to acknowledge the loss of someone special to me, even if it isn’t really my loss to bear. It is allowed. It is part of what makes this work so sacred and beautiful.

So here’s to her—and to the few before her, those other “ones in hundreds” that float up in my memory today; may their memory be a blessing.

Too much and also not enough

Today’s theme is: nothing would be enough.

Something I’ve learned about the physical process of dying is that it can take a long time. And during that in between time, when someone is slowly slipping away, there isn’t a whole lot to do. Family members ask me all the time what they should be doing, besides medicating and sitting and doing the personal care that a living/dying body still requires. And all I can tell them is, what you are doing is enough. There is no secret other task to complete; you’re already doing everything you can. Lately I’ve learned to add, it doesn’t feel like enough, but nothing would. Nothing would be enough.

Extrapolate that thought to the situation we all find ourselves in: the seemingly endless marathon of work and childcare and eldercare and anxiety and boredom and news and sickness and and and. Nothing we are doing feels like it is Enough: there are not enough hours in the day, not enough mental space to hold all the events of the world, not enough self care, not enough socialization, not enough of anything. And yet, what could be enough at this moment? What would be enough, except to return to our normal lives?

So much of my work is giving permission to others to let go. I have leaned over the bed of a dying body and whispered that it’s time to go. I have sat in intimate silence with near strangers and assured them that it is not cruel, but loving, to want their loved one to die instead of live in suffering. I have encouraged both the dying and then the bereaved that what they are doing is enough, even though it doesn’t feel that way. I have said it in supervision, to social workers who feel they should be smarter, more skilled, better advocates. I have meant these words every single time. But I find myself forgetting to apply them to myself.

I could make you a list of all the times over the past ten months—the past ten years, really, of my career!—that I have felt I did not do enough. I think any social worker could list for you the mistakes they’ve made over a long career: resources they did not know about, clients they could not reach, tasks they forgot to complete. But I would also argue that what has gone undone is far, far less than what has been done: referrals made, clients heard and supported, minds changed. Even when we feel that there is not enough—not enough resources, not enough time, not enough of us—we continue to do the work.

And so I give you permission—who am I kidding, I give myself permission—to let go of doing more. There is no more; there is what we are doing and it is enough.

Burning out, taking care

I don’t want to write about burnout.

I don’t want to write about self care.

I don’t want to reiterate and review what we all understand, not only as social workers but as parents trying to maintain some normalcy for our children; as professionals attempting to be effective and innovative with new work challenges; as adults navigating how to safely socialize with our loved ones. I don’t want to acknowledge that I have hit a wall because we are six months into a global pandemic and in the midst a political horror show and I have two little kids and three jobs and it’s honestly just too much.

The thing is, it’s not hard to write about burnout and self care: they have become meme-ified and pop cultured to death. There are articles and BuzzFeed lists and Tik Toks (I would imagine; I’m too old for Tik Tok) that explore these topics. But because the internet eventually blunts the edges of nuance from anything, these concepts feel more like buzz words than complicated and fraught issues. But there is nuance to be found. There are levels of burnout; there are different forms it takes, different ways it manifests, not just in our professional lives but in our personal lives. There are ways to talk about self care, too, that are complicated, that force us to consider the complicated nature of society and privilege, that go beyond “make sure you’re getting your 8 hours of sleep a night!” There may be nothing new, exactly, for me to say about burnout and self care, but here I am. Again.

I am tired. I am tired of a pandemic that has robbed me of the most basic joys of my life: overscheduling our weekends with out of town visits and parties and tertiary friends. I am tired of a political discourse that is disappointing at best and disgusting at worst. I am tired of a scary and unknown future that awaits us with climate change and racial violence and injustice. I am tired of the news, every day, of people in power doing the objectively wrong thing. I am tired of checking off the box on my psychosocial assessment that says I provided education about self care to the patient and their family. Did I do that? Did the words ring hollow? They ring hollow in my own mind so I imagine they aren’t coming across full of vitality and assuredness.

I am sleeping; I am eating; I am exercising (kind of; running up the stairs twenty times a day counts, right?). I am doing the self care things but I am still in the burnout place. That’s why I keep returning to these concepts. It is not as easy as saying “treat yourself” and getting a pumpkin coffee. Self care is complicated and difficult because the majority of us cannot just turn off. In fact, I know I’m luckier than most. I can’t write about self care and burnout without also acknowledging my great privilege. When I am exhausted, I have a partner who can pick up the home and kid slack. Although I am enraged by the lack of justice for my Black brothers and sisters who have been murdered by police, my whiteness allows me to be only angry, not traumatized. When I have reached my limit at work, I can schedule an easy day or call out sick. But I am still struggling.True self care does not feel possible in this environment. I keep thinking to myself, there is a way to be restored. But what is it? How do I find it?

This is the part where I should review the signs of burnout and tell you some of my favorite self care tips. But I don’t think that’s what we’ll do today. Instead, I want to thank you for reading; I feel better after the words are out of my head and released into the world. And I want to say, too, that I think it’s ok to hit the wall once in awhile. Sometimes doing the best you can is to let go of the best and just, you know, do.

Be well this week; I’m certainly trying to be and I hope you are as well.

The Work of Intrusion

Death is such a private time; it is the only thing we truly do alone. Sure, if we’re lucky, we’re surrounded by people who love us, but the final trip is done solo. I’ve often wondered where the dying are during that in between time: when the body is still here but the soul (or whatever you want to call it) begins to fade away. I guess the answer depends on your own personal belief system.  I’ll spare you mine; it’s private and precious to me but also not the point of this blog post. This post is about feeling like an intruder.

So much of social work is about invading people’s personal space. We ask wildly personal questions of our clients: what kind of sex do you have, and with whom? How much money do you make? What religion do you practice? Where do you want to die? Imagine asking someone those questions in any other setting. I’m a real hit at cocktail parties, let me tell you.

And yet, this is the work: to build rapport and intimacy as quickly as possible so we can help people. It is a skill that we have to cultivate over time, acknowledging our own discomfort and moving through it. I sometimes feel like an intruder in hospice: when I walk into a home and someone is actively dying and I’ve never met the family before, for instance. Who am I, to invade this sacred space? People often come onto hospice very late in their illness—a topic for a whole different post, I can really rant about that one—so we don’t always have the time to provide the quality care that is the goal of hospice: the relationship building, the life review, the exploration of spiritual and existential distress. Often, I walk into a house and the patient is already halfway gone. The body is present but the person is not themselves, exactly. In those moments, I feel like an intruder, a voyeur. What can I do for someone who is mostly gone? What can I do for a family of strangers in their most intimate, private grief? Sometimes I have felt an urge to leave as quickly as possible, to spare everyone the awkwardness of my presence.

And yet, I have been invited to be present; that is the work I’ve agreed to do. That is what we have all agreed to do, as social workers: invite and share vulnerability, create intimacy and trust, sometimes over months and years and sometimes over just minutes. I can tell you that while I love having a patient for a long time—love hearing the stories and meeting all the family members—there is something special and sacred about holding space in the room for a stranger as they exit this mortal plane. I used to want to run out of the room, sure that I was already too late. Now I see the usefulness of my presence; I can be still and quiet and assure the family: you’re doing everything right. Thank you for letting me be here with you. It turns out I am not an intruder after all, but a source of comfort for the journey. Even if it’s only at the very end.

Image by Jose Pereira, Unsplash

Finding hope

There is a lot of hope in my work.

I know that sounds strange because I work with people who are dying and grieving, but my experience mirrors that old adage that hope is like oxygen: we need it to survive. The concept of hope changes for my patients over time; they go from hoping to get better to hoping to die, comfortably and with dignity. But still, the overwhelming feeling I meet is hope. And while I am inspired and awed by it, witnessing hope in these circumstances can be tricky.

A few years ago I went to see a young patient who was actively dying. I can’t remember her name but if I close my eyes, I can see her face: I am in her apartment, with her husband and her sister; I can see their faces as well. I can see the patient beginning to leave her body; that is, she was physically still with us but her soul (or whatever you want to call it) was not totally there. And I will never forget, while she was breathing in that shallow, erratic way that means death is close, her sister said to me, “Other people get miracles; maybe she’ll get one. Do you think that could happen?”

I’ve met this experience so many times during the six years I’ve worked in hospice: hope crashing into reality. And what is my role then? How do you validate someone’s hope and fears and raw grief while also educating them about what is actually happening? How do you say nope, no miracles today, she’s already leaving us? It would be cruel, in that moment, to say those things but it would also be cruel to lie and say, yes, it’s possible she will sit up and the cancer will be gone and she will be your sister again.

Despite the scene being so vivid in my mind, I can’t remember exactly what I managed to reply. My hope is that it was something like: “I hope that’s what happens; but what we’re seeing makes me think we’re at the end. And I’m so sorry.”

My words are lost to me now, because they aren’t that important. Instead, the lesson of being very still is what has stayed with me. In those moments, when the family is in a kind of chaos, I am always tempted to rush: to meet the family’s anxiety with my own out of some weird empathetic sensibility. Instead, I have trained myself to become as still and quiet as possible, to try to spread calmness through the room, even as I feel afraid to say out loud that there will probably not be a miracle.

I’m writing this today because I have been thinking a lot about hope in the past several months. I often feel a dearth of it when I read too much Twitter or see someone in the Wawa not wearing their mask correctly. I wonder when this will end, when we will get to the other side, when I will be able to hug my friends again. At moments (just moments) I feel hopeless. But my work brings me back, somehow. There is hope to be found even in dying. If that can be true—and I promise, it is, I have seen it—then there must be hope to be found anywhere.

Image by John Towner

White privilege, hospice, and a ton of unanswered questions

It doesn’t feel like the time for me to be talking; there are BIPOC voices that need to be elevated at this moment and I want to be someone who elevates those voices. That being said, it also feels important to interrogate the ways in which social workers work within a system of white supremacy. And it feels important to acknowledge how tricky it can be to balance the work of anti-racism and social justice while also building rapport and offering support to our clients with unconditional positive regard.

Easy stuff!

I’ve worked in hospice for six years in a city that is racially and ethnically diverse but also often clearly segregated. The neighborhoods I visit vary wildly, both socio-economically and racially. And the demographics have changed over the years, as all neighborhoods change. In fact, that’s the racism I encounter from my patients and their families. It’s not racial slurs or explicit hatred; that would maybe be easier to address. Instead, it’s the insidious, widespread, casual stuff. For instance, the white family who says, “We moved because the neighborhood started changing, you know.” The white patients and families I see feel safe using coded phrases like that because I’m also white. And in those moments, as an ally, as a social worker, as someone who wants to be Helpful and Brave, what am I supposed to do?

With a friend or a family member, perhaps I would be brave. Hopefully I would be brave and address those statements. But with a patient or their caregiver, I must confess: I am not brave. Instead, I am complicit. In six years I have not figured out how to manage the twin asks of doing my job and doing the bigger work of anti-racism. At best in those moments, I make my face go stone and change the subject. I don’t think that’s enough. But I honestly don’t know what else to do.

One of my supervisees and I spent a solid amount of time talking about this and we didn’t end up with the Big Answer. The closest I can get is that we have to work in the role we choose. Which is not to say there’s never an opportunity to push back in a therapeutic relationship. The questions are when and how to do it. As my supervisee wisely pointed out, is it fair or reasonable to ask a person to examine their racism and their prejudice as they are dying? Will it do any good? Further, do I do my Black patients a disservice by not acknowledging the racism they face in the healthcare system I represent? How do I start that conversation? And when? Will it be welcomed or will it also be considered harmful?

Lots of questions I don’t have any answers for. There’s more for me to learn, clearly: more reading to be done, more discussion with others, more self-reflection. One place I’ve started is with this Medium post by H. C. Dawes; I hope you’ll check it out: https://elemental.medium.com/an-invitation-to-white-therapists-a04cc93b1917

Thanks for reading.

Swinging back and forth

Well, things have taken quite a turn, haven’t they?

I don’t have any special answers, any more than anyone does. I’m doing what everyone is: trying to balance childcare and work and self-care and watching the news (though I do less of that because self-care). I’m providing supervision and some therapy virtually; I’m seeing hospice patients in their homes, wearing a mask and sitting several feet away. I’m trying to provide some structure for my little girls, who are really too young to have a grasp of what’s happening but who still need reassurance after their lives have been changed significantly. I am video chatting with friends and family and having the occasional crying jag. I’m doing what we’re all doing. And in the midst of it, I am grieving.

I’m sure you’ve seen a lot about grief in the past few weeks. It seems to be the best descriptor a lot of people have about how they’re feeling. In addition to the anxiety and stress and depression many of us are experiencing is a heavy helping of grief: for the normalcy we’ve lost, for the suffering of others, for the waves of deaths around the world. We are all experiencing loss.

I have a favorite theory of grief. (If you’re a social worker reading this, or a hospice worker, I know you just nodded your head in understanding. If you’re not, I’m sure this blog is already a weird read for you so you shouldn’t be too surprised). In the past few weeks, as we’re all trying to come to terms with what’s happening, I’ve found this favorite theory to be a great comfort. It’s called dual process theory and I hope you find it helpful, too.

Imagine a pendulum swinging between two orientations: loss and restoration. When the pendulum swings into loss-oriented thinking, that’s when we’re actively grieving: experiencing our pain, adjusting to the “new normal” (a phrase I have grown to truly despise), and accepting our losses. We can only live in that space for so long though; it’s sad there and our brains can only tolerate so much sadness. So imagine the pendulum swinging again, this time to the restoration orientation. This is a state where we’re becoming comfortable in our new roles, being distracted by other needs, and paying attention to the ways in which our lives have changed rather than just our losses.

It’s not a linear theory; that’s part of its appeal, if you ask me. Instead it imagines the pendulum swinging back and forth over time, as we experience both states of being. There’s no timeline for grief, you see. There’s no normal way to do it. We’re all just swinging back and forth between the mundane tasks of daily living and the profound grief we are experiencing as human beings in the midst of an unprecedented crisis.

I hope you’re caring for yourself, however that looks. I hope this theory or this blog is helpful to you, or to someone you love. I hope that you are able to see the light that shines in darkness and that you can forgive yourself when you’re not able to; it is, after all, an ongoing process. I hope you are safe. I hope this ends soon. I hope you I hope and hope and hope.

Be my witness

I’ve had a lot of trouble writing this post. Not because I don’t know what I want to say; the words have been pouring out for days. It’s more that I can’t seem to get them into a coherent order. I’ve been struggling with my work—not my job, but the actual work of being with grief and illness and death. I’ve been thinking for weeks about what it means to witness the suffering of others.

It’s a heavy topic, and I’ve come to imagine it as an actual weight. When I’m with my patients and their families, I take their weight for a little while, to give them a rest. Then I hand it back before I leave the house. I literally leave, which helps separate me from the grief I’ve witnessed. But lately the weight has seemed heavier, not as easy to release when the visit ends. And because this blog has become a key part of my self-care, I’ve got to write it out so I can move on.

The other day, I mentioned to my husband that I had met someone who had lived the life of Job. He had never heard that expression before, which makes me think it’s an old-fashioned one (I have an old soul, you guys) so I will elaborate. Skip this paragraph if you’re familiar with our friend Job of Old Testament fame. Job was some poor soul that God used to prove a point to Satan. (Old Testament God made some upsetting choices, honestly). God not only stripped Job of his earthly possessions and killed off all ten(!) of his children, He also gave the guy a horrid skin disease. This was all to prove to Satan that Job would continue to love God under any circumstances. There are more details, of course, but you get the gist: Job’s suffering was incredible.

I sometimes meet people who have suffered so much that a part of my brain thinks, this cannot possibly be true. Their losses have added up so significantly that it is almost unbelievable that one person could have bad luck like that. There are times that I am faced with such tragedy and pain that it nearly takes my breath away. In those moments, I wish I didn’t choose to be a witness to suffering.

And yet, I did. Or it chose me, whichever. The point is, I am honored that people trust me enough to tell me about their trauma. I feel that it is a gift that I can bear witness to someone else’s pain and briefly hold it for them so they can get a break. I don’t have to live with it, myself (I have my own tragedies to carry). Anything is bearable for a few minutes and I usually can let it go.

But, like I said, lately I’m having trouble releasing the weight. I imagine myself being pushed down, little by little, as I hear sadder and sadder stories. Picture me up to my knees in the ground, carrying something heavy on my shoulders. That’s what it feels like: I’m standing upright but I’m sinking.

It’s hard to admit that. I pride myself on having excellent boundaries and solid self-care. It’s difficult to tell you that my usual stuff is not totally working at the moment. But the best disinfectant is sunlight; it’s better to admit that I’m struggling. So what will I do? In these times, which come along with the territory of the work, I allow myself to feel overburdened. I let my heart feel heavy. I go to church. I look into the beautiful, healthy faces of my daughters and try to be present with them. I read celebrity gossip. I take deep breaths. And I wait, as patiently as I can, for the weight to lift.

There is great tragedy in the world but also great joy. Even Job received his rewards (questionable whether the pain was worth it, but again, Old Testament stories are wild). I can still see the good. It exists in the warmth of strangers, in music, in bright sunsets, in my children’s laughter. It exists in my work, which can be deeply, profoundly sad, but also wildly, touchingly beautiful. It is heavy but I have chosen to carry it. I am still grateful.

Speaking of which, thank you for being my witness today. I hope you find an easy road today. Be well.

Not a rupture, but a tear

Over the years, I have grown comfortable with what I can and cannot do for my patients. I think often of my early hospice career, when I once called my dad after leaving a visit, sobbing because my very young patient was going to die. (I’m sure I’ve written about this before but it has shaped my practice so much in the past six years, I feel compelled to mention it again). The short story is, I told my dad that I couldn’t do anything for her because I couldn’t stop her from dying. And my dad kindly reminded me that I could do something: I could be with her.

It’s a lesson I carry with me into the saddest cases as well as the most mundane days. It’s how I do my work without being drowned by the suffering of others. Also, it’s true! I can’t stop people from dying but I can bear witness and be still and that is mostly enough.

But then, there’s this patient.

I’ve been seeing this lady every two weeks since July. She and her family were told by the doctor, in July, that she had hours to days to live. Another wise thing my dad has told me my whole life is that doctors don’t know everything and they definitely cannot accurately predict when death will come. Here, case in point: she’s still alive in November. And she’s not exactly thrilled about it. I can’t blame her: she’s mostly confined to her bed, she barely eats, and she feels like a burden on her children. When I visit, we talk about those things, but also about her life and her accomplishments and her family. We have a good rapport and I think she enjoys my visits.

Last time I saw her, she was having a particularly bad day. I used all my active listening and therapeutic presence skills and I thought, when I left, that I had been at least a little helpful. When I called this week to schedule our normal visit, she declined. This happens, don’t get me wrong; sometimes people aren’t up for a visit, especially if it’s “just to talk.” But there’s a little nagging voice in my head that is telling me she said no because I can’t do anything for her.

This isn’t a therapeutic rupture exactly but it does feel like a little tear, or a crack maybe. And again, I may be projecting, but I heard in something in her voice when she said “not today.” I heard, “you can’t do anything for me, so why bother?” And that’s the part of the job that scratches away at my confidence and my resolve. I can’t change things for her. What I can offer, she doesn’t want right now.

It’s taking everything in me to type the following: THAT’S OKAY! It is okay that she declined one visit, one time. It’s okay that she’s depressed. It’s okay that I have no magic wand. (Maybe if I write these words enough, they’ll come true). It’s okay to not be all things to all people.

This is mostly my stuff because I’ve been having a hard time getting people to agree to visits, especially new patients. That’s a thing that happens in this job; after six years, you would think I could sit comfortably with it. But at this moment, I’m struggling with it. And honestly, that’s okay too. It’s not a rupture in my work, just a stumble. Carry on, my grandfather used to say, and so: I will.

Photo by Namnso Ukpanah on Unsplash

Who's in charge here?

I never know what I’m walking into when I have a new hospice admission. Likewise, my patients and their families don’t always understand why I’m there. The nurse and the home health aide, even the chaplain, have very clearly defined roles. When I tell people I just want to talk, it can make them nervous.

At that first visit, death doesn’t always come up in the conversation. It’s a delicate balance: building rapport and offering education and being present without pushing too hard on the door to deeper issues. However, sometimes the patient opens the door for me. Take, for instance, the other day: I visited with a new patient who almost immediately wanted to talk about her impending death. She wanted to know how much time she had left (can’t tell you, sorry); how involved she could be in her funeral planning (as involved as you want!); and how it was possible to feel physically ok and somehow still be dying (take that one as a gift, my friend). We had a difficult but very nice conversation and I think I was helpful.

The next day, the nurse called me to tell me that the patient’s sister didn’t want me to talk to the patient about end of life issues. (Imagine me rolling my eyes).

Luckily, the nurse is no shrinking violet; she informed the sister that the patient is alert and oriented times 72 and gets to be a part of her care planning. In fact, the regulations (if you, like me, are a rule-follower) insist upon the patient being involved in her own care.

But families don’t care about the regulations; they care about their loved ones not being sad, or scared, or “losing hope.” I can’t tell you how many times a (well-meaning) family member has said to me, “We don’t want him to know he’s on hospice” or “we didn’t tell her that she’s dying.” (Spoiler alert: people typically know that they’re dying). And truly, I get it: we don’t want the people we love to be afraid or feel sad or suffer. But, as I always remind those family members, we don’t get to make decisions for other people as long as they’re capable of making their own. We can be tactful; we can be kind. But I will not lie to a patient who asks me a direct question. I will not change the subject when a patient wants to talk about her death. It’s easier sometimes, as I tell my patients and their family members, to bear one’s soul to a stranger, if only because they don’t have to be careful. I won’t start crying or tell them it’s going to be ok; they don’t have to protect me the way they want to protect their loved ones.

In my most gracious moments, I can acknowledge that protection is what people like the afore-mentioned sister are after. In my more annoyed moments, I start crabbing about how it’s all about control and who wants it and who has it. Both can be true! What’s important is to focus, once again, on the person we are serving and to (kindly, firmly, lovingly) set boundaries with everyone else. Advocating for patient choice is foundational to this work; what a joy when it is so easily done.

Living in the village

The other day, I just about ran out of a joint visit. It was a tough one: the patient’s caregiver is struggling, to put it mildly. His anger is palpable. He is hyper-focused on a story he tells every time I see him, of how the hospital and the doctors wronged him and his partner, and how he will get revenge (his words). It is a difficult house to be in, so the nurse and I have made a couple of joint visits.

As a rule, I love joint visits. This work can be isolating and lonely and it’s helpful to have someone else with you sometimes, if only to cut your eyes at when the family leaves the room. I’ve been lucky over my career to work with a lot of wonderful nurses who relied on me for my expertise just as I relied on them for theirs. I think of hospice—of all interdisciplinary work, really—as a village. At its best, the team functions as a mini village where each person has their own role to fulfill: the nurse, medical care; the home health aide, physical care; the social worker, emotional care; the chaplain, spiritual care. Beautiful, right? Everyone has their own set of skills in the village, which complement each other and serve the patient.

There’s a balance to village life: just as I’m able to give to others, I have to do some taking, too. Obviously it’s not always an even split; that’s life. But with this co-worker of mine, the split is so off that something has to change. And I’m struggling with how to set a boundary without derailing a fairly new professional relationship. This visit may be the straw that is breaking my back.

I don’t want to go into too much detail, because the minutiae is not terribly important. The gist is, this co-worker attempted to do some psychosocial interventions in a clumsy, overbearing, awkward way, that only set the caregiver off (I told you he was angry, remember) and took the oxygen out of the room for a few minutes. It’s not her fault that she did the interventions poorly; she didn’t go to social work school. Just as I would never take someone’s blood pressure or tell them how much medication to take, another discipline can’t do social work.

Despite this very large misstep, she had a good rapport with the caregiver so the visit didn’t end in a yelling match. The visit was over shortly thereafter and even though I knew she wanted to debrief, I had to get out of there. I just about ran to my car, angry with her for disrespecting my skillset, frustrated with myself for not cutting the conversation off the moment it began, and overall feeling horrible, about that particular interaction and about how poorly I’d set boundaries with this co-worker.

Luckily, I have good supervision at this job so I called my supervisor for some validation and guidance. She gave me both and helped me find a way to set some solid limits. I want to be helpful; I want to be emotionally present for my colleagues. At the same time, I can’t be all things to all people. I love the village concept but as I said, there is a balance. I hope this co-worker and I have found the right balance so that we can move forward. This job is easier when you’ve got other people on your side.

The perks of being grounded

Recently I got together with some of the girls I grew up with for lunch. It’s been more than fifteen years since we’ve all been together and I was expecting it to be a short little meetup. After all, what do we have in common after so much time apart? Instead, we chatted for more than two hours, until we all reluctantly had to get back to our families and our Sunday chores. I left feeling happy and surprised but also deeply grounded. These women know the most core parts of me. We’ve lived a lot of life in between our high school graduation and now, but still, they understand me; they brought me back to myself.

Since that lovely lunch, I’ve been thinking about that feeling of being grounded: namely how it makes this work easier. It’s different from self-care, a term which has been co-opted by pop culture so much I think it’s lost a bit of its meaning (a rant for another blog post). Being grounded is not exactly about self-care, though that certainly factors in. What I’m referring to is being strong in my own sense of self. So often in this job I’ve lost myself: because of difficult clients, micro-managers, my own counter-transference. There is often chaos in what we do, swirling around whatever the core of the issue is, preventing us from getting to the point. It’s easy to get drawn into the chaos. I think of family meetings I’ve been in where I was overtaken by stronger personalities or louder voices (hard to imagine, I know). Over the past decade of doing this work, I’ve replayed client interactions where I lost my patience or got over involved in the minutiae, missing the part I could actually help to change. At times I forgot how to listen, how to be still: core skills of our job.

I don’t recommend this strategy as a way to get grounded. As important as it is for us to examine our work, it’s even more important to walk in to the work confident in our strengths and aware of what we can’t offer. When we are grounded, when we know ourselves and feel strong in that sense of self-knowledge, that’s when our best work comes out. That’s when we are able to get to the eye of the storm and offer real help.

So. As you walk into your week, into the frustrations and successes and surprises of our work, I hope you are acutely aware of what it takes to ground you. For me, it’s being with old friends; watching my daughters play; and being outside. These are the ways I come back to myself. I hope you have a way back, too.

Photo by Deniz Altindas on Unsplash