Identity Discrepancy in Caregiving
Who am I now?
Caregiving for someone who is seriously ill or dying changes you. It demands your full attention. It also sometimes rewrites who you thought you were, or were supposed to be.
This internal conflict is known as identity discrepancy.
At a recent symposium I attended at Northwestern University, many of us discussed this uncomfortable gap between our self-concept and the version of ourselves required by the caregiving role.
When I support a care team, I witness disorienting shifts among my clients’ loved ones. When they experience this discrepancy, it leads to momentous soul-stretching at best or a feeling of being erased at worst.
Whether you're an adult child bathing a parent, a spouse managing medications instead of going on retirement trips, or a death doula witnessing family dynamics erupt under stress, the identity repositionings are profound.
What Is Identity Discrepancy?
When I see this happen in real life, identity discrepancy shows up as a misalignment between who a person is and who they feel they must be. This is typically on top of everything else they’re dealing with.
In end-of-life caregiving, I’ve seen:
A daughter become the “parent” overnight, managing finances and deciding on medical procedures.
A husband shift from being an equal partner to being a personal care aide.
A longtime friend find herself the only one willing to sit vigil, wondering how she became the family’s de facto grief anchor.
A dying person feel this fracture, no longer seen as a dynamic human but as a patient, a “case,” or a task.
Family members or lifelong friends take caregiving roles out of love. Some feel a sense of honor or obligation. Most do this for a combination of reasons.
But when these new roles take on a feeling similar to when we wear clothes that don’t quite fit, it distorts our sense of who we are.
How It Manifests
Identity discrepancy isn’t always noticeable at first. Sometimes it can feel like a quiet unease. But if ignored, that unease eventually bubbles over into frustration.
Then resentment takes over and shows up as grief about what’s happening to the sick person as well as what’s happening inside the caregiver. It’s a lot.
Examples to Consider
No matter how we prepare to care for aging parents, it’s stunning how quickly those roles reverse. We think we have more time to just be their children, and all of a sudden, we’re scheduling their morphine.
Spouses or partners wrestle with emotional dissonance amidst everything else. They feel guilty for wanting to be equals again.
Professional caregivers aren’t immune. We lose our own sense of self after witnessing countless deaths, particularly when we don’t take time to process grief or maintain boundaries.
And let’s not forget those at the center of our care. Sick or dying people also experience identity discrepancy. Self-perception blurs when a once-independent parent now requires help with toileting or a strong, stoic matriarch becomes frail. People talk over them, about them, as if they’re not in the room.
Disappearing before you die is often worse than the affliction itself.
The Hidden Gifts
Despite the pain, caregiving can also expand identity.
Many caregivers, after the shock of their role change settles, find themselves growing in many ways. They feel more compassion, endurance, or clarity.
I’ve seen a spouse find new intimacy in vulnerable moments while helping their partner get dressed. I’ve supported a daughter who uncovered a fierce inner advocate inside herself while battling hospital bureaucracy. Many home health aides I’ve worked with recognize the sacredness in small acts like trimming nails, holding hands, or bearing witness.
How to Harness the Good Without Losing Yourself
Caregiving, at its best, clarifies priorities. The key is recognizing the transformation without getting lost in it.
Name the Discrepancy
Just saying, “I feel disconnected from who I used to be,” brings relief. Identity crisis, like so many things that shouldn’t be shameful, thrives in silence. Speak it out loud. Talk to a friend, therapist, spiritual advisor, or support group.
Caregiving groups (especially for adult children or spouses) help my clients feel less alone when role confusion strikes.
Remember Rituals
What is one thing that feels like you?
It might be a morning walk, a favorite playlist, or a funny movie where you know all the lines. For my mom, it’s her morning rosary. For me, it’s twenty minutes of mindfulness meditation.
Keep up that routine while caregiving. Even 10 minutes a day can reconnect you to your own identity.
Beware the Myth of the Martyr
Caregiving is noble. But losing yourself is not.
Your needs still matter, and paradoxically, honoring your identity often improves your role as a caregiver.
Allow Emotional Contradiction
You can love the person and hate the situation. It’s perfectly natural to be proud of what you’ve done and desperate for it to end at the same time. I encourage my clients and loved ones to swim around in nuance and get comfortable with it.
Complexity is human.
Normalize the Conversation
Talk about identity with the person you’re caring for (if possible). Some of the most healing conversations happen when we acknowledge what’s changing.
“You’ve always been the strong one, and now I want to be strong for you.”
Or, “I miss the part of us that used to just laugh and be silly.”
Be Patient with Yourself
After death, give yourself time to re-emerge. Many caregivers feel adrift because they aren’t just grieving a person. They’re grieving the version of themselves that existed before or during the caregiving.
Let yourself feel it. Explore some grief rituals that might make sense. Get plenty of rest. When you’re ready, reconnecting with old passions helps to reintegrate your identity.
For Professional Caregivers
If you are a hospice nurse, home health aide, or death doula, identity discrepancy sneaks in subtly. You might become “the calm one,” “the wise one,” “the unshakable one.”
But you are also human.
Continuously witnessing suffering and death requires processing. I’m not just talking about skills training. We must take time to reflect on what’s happening in our professional world. But we need to grieve and also stay connected to the parts of us that aren’t defined by our jobs.
Every caregiver deserves recognition not just for what they do but for what they hold. Emotionally, spiritually, existentially.
Getting Back to Ourselves
Caregiving is not just a duty; it is a radical reshaping of identity. If we approach this with honesty, that reshaping can lead to some interesting changes. We recognize a certain kind of inner strength. And when we come out the other side, that clarity about what matters most requires some attention.
Tending to our inner lives while we care for others is not a luxury; it’s a necessity. Because who we are matters, even as we (and everything else) changes.
Information and recommendations that are not only helpful but essential.
The caregiver also lost their job when their loved ones die. In the midst of shock and grief I had a sense of what do I do now.
Also, could you post about anticipatory grief. I got a grief counselor six months before my husband died and she was a lighthouse for me.