Baring Witness: When Caregiver Burnout is Grief

Photo by Pars Sahin on Unsplash

I have had some very thought-provoking conversations lately. Most notably at the conference I spoke about my book, and again last night meeting a group of other coaches. So sitting here on a rainy and gloomy morning, I am reflecting on the pieces and what is resonating deep in me and why.I am the adoptive mother of a now-adult son who has multiple intellectual and developmental disabilities. And today I am more aware of my own grief and that experienced by other caregivers. You grieve for them, for yourself, there is disenfranchised grief, there are all of the things that you and your child lose along the way, there is loss of self and feeling competent when you are treated poorly by others, there is loss of work and career because of the shifts and decisions you make, there is a loss of normal, there is a loss of freedom, there is a loss of future, there is a loss of belonging and a loss of compassion and understanding from others as they move on and you feel stuck, there is a loss of friends, there is a loss of time, a loss of energy….. I could go on and on.

But what sparked these feelings of grief lately? I keep having to turn down invitations because they are for Tuesday evenings. My son and I have two dedicated times to just be us — Julia and Brandon — not caregiver/care recipient, not even mother son, just us enjoying each other’s company and doing fun things together. Those times are Tuesday evenings and Sundays. I’m not saying I never juggle these times but I treat them as sacred and it has to be a pretty big deal for me to shift it or give it up.

I think this is why I didn’t burn out caring for my son. I hold on tight to our relationship, protect it, and nurture it. I didn’t burn out at work — I have always loved what I do and have been extremely fortunate to have worked with wonderful people in great workplaces. I realized that it was the system and structures that took the most out of me. But through sitting with everything, I now deeply understand the breadth and depth of the grief that I carry — I work through it — but there are countless pokes at it. Like having to once again turn down an invitation for a Tuesday evening.

Now I know the tendency is to respond with things like “well it can’t be that important” or “this is a choice that you make” or some other attempt to make me feel better. But the truth is, some of the things matter a lot to me too, and I’m not willing to pretend they don’t. But changing those committed times has consequences and take a lot of maneuvering, coordination, time, and energy and can’t be done quickly.

The Misnaming

So how much of caregiver burnout might be grief? A grief that has no name, no witness, and no end point?

This is an important distinction because what we prescribe for each is very different, even though they may present in similar ways. Burnout is framed as depletion. So what gets recommended is ways to replenish yourself: rest, boundaries, respite, yoga and meditation and other forms of self-care. They can help and due to the complexities of caregiving, it can work on the components that are burnout. But you can’t self-care your way out of grief.

Grief does not need replenishment. Grief needs to be seen, held, and shared. When we misread grief as burnout, we hand someone a bubble bath when what they really need is a witness.

This is not new. Kenneth Doka coined the term disenfranchised grief: grief that is not openly acknowledged, socially supported, or publicly mourned. Grief that is dismissed or whose source is not somehow deemed worthy or correct. Pauline Boss spoke about ambiguous loss: loss without clarity or closure, where the person is still here but something essential has changed. This is what is often used when we consider some of the grieving that occurs when a loved one has dementia. And in 1962, Simon Olshansky described chronic sorrow in parents of children with disabilities. He saw a grief that does not resolve but returns, again and again, often at milestones.

What I want to add is the relational part. Grief is what love and attachment feel like when what they are attached to is lost or changed. Look back at my list. Almost every loss on it is relational. They include belonging, compassion, friendship, being understood, being treated as capable. Even loss of self is about how we relate to ourselves and others relate to us.

That is why I used baring witness in the title, and why both spellings are surprisingly correct. The caregiver bares: (s)he exposes the losses that are often hidden, usually at a cost. The people around the caregiver bear: they stay present to something they cannot fix. Witness can only happen when both the baring and bearing happen at once.

In true Relational Intelligence Framework™ fashion, the rest of the article is about both sides of that and what can happen between and around them.

The Caregiver

Caregivers don’t need more tasks or “answers”. What they do need is agency: small ways we can reclaim the space to grieve.

Name the losses. Be specific. An unnamed loss cannot be grieved and it cannot be shared. “I’m tired” can be the result of grief but it invites advice about getting more or better sleep. “I’m grieving the loss of being able to easily get out for an evening” invites something else entirely. Writing it down might not fix everything, but it can turn a foggy thought into something that can be worked on.

Expect the grief to come back. Chronic sorrow returns at milestones: an 18th birthday, watching friends’ children go off to or graduate from college or marry, for example. Others can seemingly catch you by surprise. When grief resurfaces see it, feel it, and start the release. If it is helpful, create a ritual around what gets you through these moments.

Notice where being treated as incompetent became believing it. Many caregivers are second-guessed, dismissed, or managed by the very systems that are meant to support them. Over time, we absorb that and blame becomes shame. It helps to ask: is this doubt mine, or did I learn it from how I was treated?

Let relationships change and evolve instead of end. Not every friend or family member can walk this road closely beside us. Some can still meet you for coffee. Others will send thinking of you texts. Others will swoop in and drop off dinner. Let this settle into the new pattern and appreciate the ways they are still there beside and for you.

Look for the people who can relate, not just sympathize. Sympathy says “that must be hard.” Relating says “I have been through something similar.” Both have value, but only one ends the feeling of isolation and brings belonging. Find your people and create your village.

Grieve on purpose. Grief that isn’t given a place will seep out to find one. And we may not like the way it escapes from us: exhaustion, irritability, numbness, or illness. By giving it time and words, by yourself or with someone safe, the grief can move and be shared.

Those Around Us

For those who love, work with or support a caregiver, this is for you. It can be hard to know what to say and do. Withdrawal can happen on both sides and it is rarely intentional. The demands of caregiving can be a lot and part of losing yourself means that you may not even know what you need or want and that can prevent the caregiver from finding their way back to themselves. The effort of trying to maintain or sustain friendships can be challenging on all sides.

One thing that I find decidedly unhelpful is the emergence of phrases like “we all have the same 24 hours” and “if they wanted to they would”. Seldom is life that simple. Our behaviours and actions are not malicious or intentional. Being able to have empathy and compassion for the person we care about can go a long way whether it occurs daily or a few times a year.

The moments of grief for caregivers often don’t have specific events tied to them. There is no funeral, no casserole moment, no obvious time to show up. You might not even know something has occurred. So how can anyone know what to say, what is needed, what might be helpful, and when?

Professionals have another layer. The pull is to fix, to solve, to provide some kind of relief. But grief is not something that is so easily resolved. Many professionals work inside systems that position caregivers as an aside, or people to be managed rather than a partner in care. We hear phrases like “caregivers as second patients” and caregivers are seen and treated as extenders of the system when it itself falls short. Caregivers don’t fit into a neat little box. Nobody intends to harm but there can be a subtle erosion of the caregiver’s sense of self and belonging, and importance of their role.

In my Relational Intelligence Framework, I use three main movements: SEE, HOLD, ACT. They translate directly into how to relate to and with caregivers.

SEE. Recognize all of the things that may be being grieved and that the caregiver themselves may not call it that. Listen to what they are saying and explore what they are not. Suspend your assumptions and biases and start to look at what is happening from different lenses.

HOLD. Stay present without fixing, comparing, or trying to find a silver lining. You don’t need to find the right words. Sitting in silence can be perfect. Saying “I don’t know what to say, but I am here.” Or asking “what do you need from me right now? An ear? A solution? Or your ‘we ride at dawn’ friend of action?”

ACT. Make small, steady deposits into the relational field. Keep sending thoughtful invitations that accommodate for constraints. Adjust the invitation to fit into the caregiver’s life: a visit at home instead of dinner out, a short call or text instead of a weekend away. Offer specific help based on things that have been mentioned instead of “let me know.” Make it easier to say yes with offers such as “Can I bring supper Thursday?”

For professionals, treat the caregiver as a partner and an expert in what they know and do. Ask instead of assuming. Name the grief out loud and create a safe space for whatever follows. Resistance will have a reason even if they can’t quite put their figure on it and find the words to explain it. Sometimes the most therapeutic sentence is simply: “This sounds like grief, and it makes sense that you are carrying it.”

Where Both Sides Meet

Here is what I have come to believe. When we are under strain, our protective mechanisms encourage us to withdraw. The caregiver stops sharing because being misunderstood hurts more than being alone. The people around them stop asking because they are afraid of getting it wrong. Each withdrawal confirms the other’s fears. The caregiver thinks that they don’t want to hear it while those around her think she doesn’t want to talk about it.

Over time, that disconnect affects what is between them. In my framework I call this the Relational Field. It is not an empty space. It is a medium, like liquid, that carries or blocks what passes through it. When the field is thick with hurt, or fear, or caution, grief cannot travel. It stays in the caregiver. When the field carries safety, honesty, and trust, the grief can move and be shared.

This is also why caregiver grief is so hard to name. I distinguish between a relationship, which is the container, and relating, which is the ongoing activity within the relationship. Looking back at my list of losses, they are not an end of a relationship or caring. What is lost is the relating: The ease, the reciprocity, the being known. Nothing has visibly ended so nobody notices the loss. Even when I don’t notice it right away, it may just need to be more of an accumulation before a light is shone onto it. It wasn’t the first missed Tuesday event — it was the third, then the fourth, then the fifth, and so on. But I know I noted that first one too. It was just easier for me to set aside and move away from. I dismiss it myself, disenfranchising it myself.

The hopeful part is that a field can be repaired and it can be repaired from either side. It does not take a grand gesture. It only takes a small risk. Each exchange is a deposit. And each new deposit into the field changes its consistency.

A small act of bearing makes the next baring safer. A small act of baring makes the bearing possible. When a friend stays, listens, and does not rush to fix it, the caregiver learns it is safe to say a little more next time.

An Invitation

I wrote this article as an act of baring. My list of losses is real, and it is still growing. Writing it down did not make it smaller. But it made it something I could share.

To caregivers: your exhaustion may be grief. You are allowed to name it, and you deserve to have it witnessed. You do not have to carry it in silence because others have not known how to ask.

To everyone around them: you do not need to fix this. You only need to stay. See the grief, hold it without rushing, and keep showing up in small ways.

Neither side can do this alone. Witness lives in the field around us. And that field is something we can tend, together.