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Series - Care for the Caregiver (PLwD) (2/3) - Grief
- Mar 9
- 6 min read
Updated: Mar 9
Grieving The Hidden Losses in Dementia Caregiving
Grief is often understood as something that emerges around death. For many care partners of persons living with dementia, grief can also unfold throughout the caregiving journey, moving in and out of daily life in deeply human ways. It may ebb and flow across days, echo through ordinary moments, and gently reshape relationships, identities, and daily rhythms.
Some care partners describe feeling as though they are accompanying someone through a gradual series of changes. Others speak of meaningful moments when the person they love feels vividly present, followed by periods of distance that carry tenderness, longing, and ambivalence. The person is physically here, and the relationship may also be changing emotionally and relationally in ways that ask for ongoing adjustment.
Dementia-related grief often deserves far more recognition and support. It may unfold quietly, outside the familiar rituals that usually surround loss, and care partners are carrying something deeply real. The grief can be cumulative: changes in laughter, shared decision-making, conversation, independence, freedom, and a sense of control.
Caregiver Grief in the Adult Child
Some care partners describe sorrow around role reversal and the experience of being stretched across caregiving for children and a parent. An adult daughter may find herself navigating school problems, extracurricular activities, teen friendship dynamics, work demands, romantic concerns, grocery shopping, and medical appointments while also trying to answer her mother’s repeated question about a husband who died a decade ago. “I’ve lost being the daughter,” she says. “I have to be the adult in every room.”
Others speak of grief connected to relational rupture and the ache of a relationship that may remain unfinished. When dementia arrives during a time when healing still feels important, care partners may carry unresolved hurt alongside the practical demands of care.
For some, the grief centers on the parent’s role as a source of safety and wisdom. The changing presence of the person who once knew how to respond to a crisis or offer a cultural perspective can feel deeply disorienting and significant.
Grief in the Spouse
Caregiving can bring profound changes in identity. Spouses often grieve shifts in shared rituals and long-standing dynamics such as the jokes, the glances, and the unspoken understanding of a shared cultural era.
One man described watching the woman who once finished his sentences now struggle to remember his name. “It’s not just her memory that’s going,” he said. “It’s our memories. Our inside jokes. The version of the world we built together.”
A spouse who lived through major cohort events alongside their partner may feel a deepened sense of aloneness in the world. Personal memories are changing, and shared experiences from the past may no longer rest in the same familiar container of understanding and lived experience. Think: Cold War and the fall of the Berlin Wall, Civil Rights and Social Movements, AIDS Crisis, Tech Boom.
“I feel like I’m not allowed to feel this.”
Many care partners wrestle with disenfranchised grief, a phrase first coined by Dr. Kenneth Doka, referring to loss that deserves recognition, validation, and support. Care partners may carry an internal belief that their feelings are hard to name, hard to share, or difficult to claim fully.
This can feel especially tender when families hold different views about care decisions or when partners experience isolation, judgment, or limited support. Emotional pain may become quiet, tucked beneath responsibility or shaped by guilt. Over time, this can weigh heavily on well-being.
According to Rupp et al. (2023; 2025), caregiver grief that is acknowledged and supported is closely tied to emotional coping and longer-term mental health. Making room for grief can strengthen emotional resilience.
Five Gentle Invitations
If you’re reading this and thinking, “That sounds like me, and I’ve never called it grief,” you’re far from alone. You do not need to name every feeling or explain every tear. You might simply begin by noticing the moments that feel tender, or the ones that catch you off guard. Grief in caregiving may ask for space, compassion, and witness. Sometimes it needs room to exist, to be seen, heard, and held with gentleness.
1. Let the Grief Be Messy, Because It Is
You don’t have to make peace with every loss as it’s happening, making peace with the ebb and flow may be easier. Some care partners find themselves grieving the loss of a shared laugh, then suddenly being pulled back into hope when their loved one remembers something out of the blue. It’s not linear. It’s not clean.
You might think:
“She was gone yesterday, but today she knew me. What do I do with that?”
That feeling may feel like it demands resolution, but perhaps it can just exist.
Grief in dementia caregiving is often layered with relief, guilt, irritation, love, and even flashes of joy.
There is no right way to feel. There’s just your way.
2. Recognize the Grief of Identity, Time, and Freedom
Caregiving reorganizes a life, in tasks and in identity. You may find yourself thinking:
“I used to be someone who had time to go for walks. To work. To rest. To dream.”
Those changes carry weight.
For adult children, it might feel like a shift from being cared for to carrying everyone.
Even if you chose this role out of love, the grief of losing your former life or the freedom to be spontaneous, spacious, or simply off-duty is real. It deserves acknowledgment.
You might say to yourself,
“My life has changed, and I’m allowed to miss what I had. Missing it doesn’t mean I’m failing. It means it mattered.”“This frustration might be grief in disguise. I miss the version of me that had room to breathe.”
If that feels familiar, it might be a signal that you're carrying more than anyone can see. Support isn't just for crisis - sometimes it’s what makes space to explore needs or changes.
3. Honour the Loss of Emotional Anchoring
Some care partners speak of a deeper kind of disorientation, the loss of someone who once helped them understand the world. The grief of no longer having a parent or partner who gets it, who understands the cohort, the culture, and the shared shorthand.
One care partner said,
“I used to joke that my dad was a walking encyclopedia, except better, because he had heart. Politics, war, culture shifts, he made them human. Now when I share a headline, he smiles politely and changes the subject. I’ve lost my compass.”
That kind of anchoring, emotional, historical, relational, doesn’t have a name in most conversations. Some care partners describe it as feeling the weight of the torch being passed - unceremonially. You may now be the one others turn to, even as you are losing the person who steadied you. That shift can feel grounding and destabilizing all at once.
You might quietly say to yourself:
“It’s okay to feel unsteady while I find my footing.”
Some care partners find it helpful to rest a hand on their chest or thighs, somewhere they feel their own steadiness, just to remember they are still here, still held, even without the one who used to hold the map.
You might carry that grief quietly. But it still matters
4. Grieve the Relationships That Won’t Repair
Not every story is one of closeness or sweetness. Some care partners step into this role after years of hurt, distance, or rupture. They may hope for healing that never comes or find that dementia has closed the window for reconciliation.
That grief is sharp. And it can be hard to speak aloud.
You might think:
“I wanted more time to repair things.”
Or:
“I’m still angry, and now I’m also heartbroken.”
You are allowed to grieve both what was and what will never be. Caregiving doesn’t always cancel old wounds.
5. Make Room for What Others Don’t See
Much of dementia caregiver grief is disenfranchised, unrecognized by others or even by ourselves. Some feel guilt because their loved one is still alive and for others, their grief may not be seen or understood if they are outside the primary family.
Disenfranchised grief might sound like a internal message that says:
“I should be coping better. I shouldn’t feel this sad.”
You might speak to that reality: “We are both grieving. At different moments, in different ways. And while I offer support, I’m grieving not having that returned.”
Final Thoughts
Grief in dementia caregiving may be overlooked. It's often in the sorrow of missed conversations, the frustration of losing and finding, or the change in daily focus and future plans. Some losses don’t need solutions, just room to breathe. When we brace against the grief, we narrow the room we have for other feelings, for meaning, and for ourself.
About This Post and Supporting Research
This post is for general educational purposes only and does not constitute psychological advice or therapy and is not intended to replace personalized care from a licensed mental health professional in Canada.
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