Carrying the weight of grief

Grief brings its own kind of exhaustion. Clients often tell me that they think they’re getting enough sleep—they’re going to bed at a reasonable hour and sleeping through until the morning, minus the usual up-to-pee-at-3-in-the-morning—and yet they still feel tired all the time. Why is that, they want to know? Often it’s the weight of their grief, holding them down even as they try to move through the day.

I’m no somatic therapy expert but it’s widely accepted that our feelings show up in our bodies. It’s no coincidence that we describe being “gutted” or “broken-hearted” when something upsetting happens; we often feel emotional pain in a physical way. We cannot disconnect our minds and our bodies, no matter how we sometimes try.

Just like any other heartbreak, grief can show up physically: as exhaustion for instance, or a general achiness throughout the body. Sometimes you may cry so hard you become short of breath for a minute. We cannot ignore the physical pain and weight that grief exerts on us. So if you feel tired, headachy, occasionally short of breath, certainly check in with your primary doctor first. But after you get the all-clear, spend some time considering: is carrying the weight of your grief hurting you?

This is not to say you’re doing grief wrong. All the ways you grief manifests are normal, if awful. Rather, I hope you take away that if you are suffering, you are not alone. No one can take your pain away from you but others are willing to help you carry it. There is no burden you have to shoulder alone, even (especially) your grief. This is your invitation to reach out—to a friend, a lover, a stranger, a therapist—and let someone else share the weight with you.

Now what? moving on when things change

Most often, I’ve written about grief as it relates to the death of a loved one. But grief isn’t only related to death and dying. In fact, it’s one of the most pervasive and universal experiences we share as human beings. It’s a part of the life cycle: relationships and jobs and the stages of childhood all come to an end. Life is full of changes that feel like losses and those losses have to be grieved.

As I’ve said before, I’m a real hit at cocktail parties when I tell people that I specialize in grief and loss. For most people, my work sounds deeply sad. And it can be! As I’m fond of saying, hard feelings are hard. But looked at another way—I live to reframe things, it’s the only part of CBT that I’m truly confident in—it’s a gift to honor our grief when something ends. We can experience our grief without wallowing; we can honor endings without big rituals. We can choose to acknowledge that endings are hard without staying stuck in the hard part.

So how do we do that? There are tons of sort of pop psychology buzz words people throw around, memes on social media meant to inspire, about “closure” and “closing the chapter” and “rising from the ashes.” Those are all lovely sentiments and I don’t disagree with them. But I think we lose the nuance of the grieving process when we put it into that kind of phraseology. Closure, for instance, isn’t a thing. Our lives are not actually laid out in neat chapters that resolve after X number of pages. We never leave behind the people we were, even if we make dramatic changes or dramatic changes happen to us. Instead, we add layers and learn lessons and yes, move forward. In short, like any kind of grief, the only way out is through.

Caregiver burnout is real. And it sucks.

Caregiving is a gift. The ability to take care of someone you love, at home, with relative comfort and routine, can be a beautiful and rewarding experience. It can also be a living nightmare. Most of the time it’s both, by turns.

Caregiver burnout doesn’t just appear one day, though it can feel like that: one day you’re fine and the next day you’re not. In truth, it’s not that dramatic; instead, it creeps in over time, slowly and steadily, until one day you find yourself overwhelmed, exhausted, frayed. It can be easy to miss or ignore the signs of burnout at first because caregiving is a full-time job. Additionally, you might also have a regular job and a family and friends and you know, a life. Or you did, before you became a caregiver. Slowly those other parts of you become buried underneath the weight of being someone’s sole care provider. It’s no surprise then that one day burnout hits you like a ton of bricks, in the form of exhaustion, irritability, anxiety, guilt, a miasma of shitty feelings.

You aren’t alone and it’s not unfixable. There are, in fact, both big and small steps to take when you discover that you’re burnt out. Before we explore those though, I would be remiss if I didn’t note that there are big systemic problems here that can make accessing those solutions tricky. For instance, one solution is to hire private help. However, for many people, hiring someone to help out is simply not a choice. There are programs through the county and state that will subsidize the cost but they’re means-tested, which means you have to come in under a certain income and asset level to access those programs. The result is, a lot of people fall into the middle ground of not rich enough for private care and not poor enough for state assistance.

That being said, there are still options. Maybe you can’t afford 24 hour care but you can swing a few hours here and there so you can take a break (an old client once called this Granny sitting, a phrase I find delightful). Maybe you can call on some nearly grown grandkids or other family members to take the occasional overnight or midday shift so you can rest. Maybe you’re resistant to that idea, and for good reason. But I would encourage you not to dismiss the idea of asking for others to step up out of hand. Sometimes someone becomes so stuck in their role as a caregiver, they don’t hear the other people in their lives who are offering to help. Or they decide not to ask for fear of hearing no. But if you don’t ask, you definitely do not receive.

Beyond that, there are other, smaller remedies. Who were you before this? What brought you joy? This is important because you cannot pour from an empty cup. In order to be someone’s caregiver, you have to be in good working order yourself. Meaning it isn’t selfish to take a shower or eat a hot meal or exercise. It’s actually a necessity that you do things for yourself so that you don’t become a shell of a person who resents what started as a gift: caring for someone you love.

There’s more to say here, namely about what happens when you’re caring for someone you don’t love or even like that much. But that’s another story for another day. Today, if you’re a caregiver, I want you to consider what things you do to keep yourself healthy and sane. If you can’t think of anything, it may be time to take a real break and take stock, and yes, consider therapy. Caregiving should be a gift, not a prison sentence.

What if I want to know about my therapist?

Once, during a job interview, the interviewer asked to describe my boundaries with clients. A pretty vague question, right? Like, it depends! But seeing as how I was in an interview for a job I wanted (and eventually got, thank you very much), I played along and responded: I answer the questions my clients ask me (within reason).

Because here is the thing: when you are sitting across from me in that first session, I want to know some pretty deep stuff right off the bat. For instance, do you drink alcohol? Use drugs? Are you religious? Have you ever tried to hurt yourself or someone else? Not exactly cocktail party conversation. So if a client has a question for me (like how old am I or how many kids do I have, etc.), I’m more than willing to answer.

Some things about me are already clear: I wear a wedding ring, for instance. I’m fairly young. I’m a woman. I’m white. For some therapists, this is about as much information as clients are allowed to know. There are different schools of thought and none of them are wrong; in some ways, it’s a personal preference. There are good reasons for a therapist to not spend a lot of time talking about herself. For one thing, that’s not why you’re paying me; we’re here to talk about you, my friend. For another, some clients use this tactic to deflect and avoid the stuff they need to talk about. But I think, especially in the rapport building phase of therapy, it’s normal for a client to wonder, who is this person I’m telling all my secrets to?

So ask away! If I don’t want to answer, I won’t. Part of this process is developing a relationship and setting boundaries within it. I’m happy to tell you that I have two kids and a little dog and a husband. I’m happy to tell you that I’m in therapy myself, and that it helps me be a better therapist for you. I’m happy too, to talk about why you want to know about me instead of telling me about you. Like I said last time, almost nothing is off limits. This is a road we walk together. So tell me, what do you want to know?

You can say (almost) anything to your therapist

This week, in my series about what to expect from therapy, I want to dive into what may be off limits to talk about with your therapist. The short answer is, pretty much nothing!

There are exceptions to this of course: if your therapist thinks you’re going to hurt yourself or someone else, or that you already have harmed someone, they’re obligated to do something with that information. But otherwise, you get to say whatever you want. You don’t have to be on your best behavior when you’re talking to your therapist. Therapy is a relationship but it’s not a friendship or a conversation at a cocktail party; you don’t have to come armed with your best stories or convince anyone of how delightful you are. In fact, once some trust is established, you can be on your worst behavior if you so choose. In therapy, you get to explore the darkest and meanest parts of yourself. It’s safe there.

Still, it feels risky to open up to someone, even a professional. On the one hand, you’re seeking out therapy because you need to talk to someone and presumably, you’re ready to do just that: talk. On the other hand, there may be a fear that you’ll say something so dark, your therapist just won’t like you anymore. Generally, we want people to like us; we’re only human. So it can be difficult to drop the social niceties we’re practiced at performing. For instance, hearing “how are you?” from your therapist is different than hearing the same question from a co-worker. And yet, for many of us, the automatic answer is the one that comes out: “Fine, thanks, how are you?”

This isn’t to say you can’t be nice to your therapist. Believe me, we’re happy to be asked how we are, even if we won’t tell you the actual answer. I’m only saying that in that therapy session, you are released from surface-level social stuff. You can talk about whatever you want.

Which brings me to another caveat: you can also NOT talk about whatever you want. You don’t have to recount every dark thought that has ever entered your mind. You don’t have to review every embarrassing moment or delve into something that feels too tricky to explore. In that session, you get to decide where to begin and where to stop. When your therapist asks how you’re doing, you can tell the truth. And if the conversation starts to go somewhere you aren’t ready to go, you can say no. You don’t have to worry; you can say (almost) anything to your therapist.

When your body betrays you

Last week, I wrote about grief. I was mostly referring to the grief we experience when someone we love dies. But there are losses throughout our life cycle that don’t necessarily have to do with death.

For the majority of my career, I’ve worked with people experiencing life-changing and often chronic illness. The prognosis doesn’t have to be terminal for the symptoms of being ill—of having a body that doesn’t do what it used to do—to be devastating and isolating. Your friends and family can’t understand what you are experiencing. It’s difficult to explain pain or fatigue or some other unquantifiable symptom to someone whose body is not sick. In a misguided attempt to help, these family members and friends may tell you that your situation isn’t as bad as it could be; that you just have to push yourself harder; that you need a second, third, fourth opinion.

Their hearts are in the right place. They’re hoping that the power of positive thinking will do the trick and cure you. But not everyone is helped by the relentless positive thinking memes that social media throws at us: believe you’ll get better and you will! Trust your body! Mind over matter! Et ceterra, et ceterra, until you start to doubt your own feelings. Among these feelings, of course, is the grief of what you have lost.

Because although you are still here, your body has betrayed you. Illness takes from us. Maybe you aren’t able to exercise anymore, or even get on the floor with your kids or grandkids. Maybe you can’t drive anymore. Or your brain fog is making it hard to concentrate at work or school or in social situations. Those are big losses to bear by yourself.

Therapy is not going to cure your illness. Further, your therapist will not be able to tell you how long you’ll be sick or if any of what you’ve lost will be returned to you. Your therapist can’t tell you that everything is going to be ok. What therapy can do is meet you where you are. You can grieve. Then you can start to rethink and rebuild your life. Then grieve some more and then rebuild some more… You can be hopeless and hopeful both at once. And you do not have to walk this path alone.

Stuck in grief

Grief never ends.

I don’t mean that grieving is a hopeless, forever state of being, though it can certainly feel that way. I only mean that there is no magic solution to fix it. There is no timeline to follow; there is no guidebook. You can experience your grief in any way that feels natural to you. The only caveat is, you cannot fast forward or go under or over or around it. You have to experience the hard feelings of grief and loss.

Hard feelings are… hard! And so many people enter therapy hoping for answers, to solve the issue they are presenting: I have a feeling, it is hard to have it, please can we make it go away? But grief doesn’t go away. It continues even when we think we have “solved” it. The task is to learn how to live with it instead of trying to outrun it.

And you can live with it, even when it feels suffocating. Over time, grief softens. It feels less like a dark hole you can’t climb out of and more like a shadow: always with you but less obtrusively. You can be released from the idea that you have to solve your grief, or outgrow it, or close the door on it. You don’t have to do that to be helped.

Then what can help? Most importantly is to acknowledge our losses: ritualize and memorialize and speak the names of the people we have lost aloud. And then, in our acknowledgement, we can also reach out to others. We can ask for help—from our friends, our family, our religious faith. We can go to therapy and allow someone else to carry the burden of grief for just a little while. We do not have to experience any of our feelings alone, even if they feel isolating. Grief is a universal experience. It never ends and it can’t be solved. But it can be shared. And sometimes, just sharing our burdens can go a great way towards relief.

 

Where do we start?

How does therapy… start?

Some people come to therapy fully ready to spill: they’re like a pot of water ready to boil over. Those first two or three sessions are just full of words and feelings and sometimes tears. That’s been my personal therapy experience and it’s one I really understand: talk until you can’t talk anymore and then we can figure out where to go next.

But not everyone is like me (thank God). Some people enter therapy reluctantly or cautiously; they are not in fact ready to spill their guts to a stranger. It’s not that they don’t know why they came, it’s more that they don’t know how or where to begin. Or they start and then get stuck. Or—and this one is the toughest for me as a clinician—they want an immediate answer.

There’s good news and there’s bad news, here. The bad news is, I do not possess a magic wand. I can’t make sisters or lovers or children behave better; I can’t bring back a loved one from the dead; I can’t give you a secret code that will make your anxiety disappear into thin air. But—and here’s the good news I promised!—there are going to be answers. We can find them together, by sifting through the past and the present. We can find a way to set boundaries with the misbehaving family members; memorialize the dead loved one; understand and quell the anxious thoughts that plague you. In short, we can start wherever you are that particular day, that particular moment, and see where we end up. We just have to start.

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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.

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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.

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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

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

Image by John Towner