Living With Grief That Doesn’t End: Love, Caregiving, and Finding Meaning After TBI

Jonny and Me

Grief is often spoken of as something that ends, a process you move through after loss. But some grief doesn’t end. It lives alongside love, reshaping each day. As a parent and caregiver to my son after his traumatic brain injury, I’ve learned what it means to carry both sorrow and gratitude, loss and love, all at once. This is the story of living with grief that continues and the meaning, beauty, and courage that can still be found within it.

Grief That Doesn’t End

When most people think about grief, they imagine it as something tied to death, a process with stages, or a loss you eventually “heal” from. For many, grief looks very different. Mine is tied to my son’s traumatic brain injury, and to my life as his caregiver. It’s not a single event in the past, but something I live with every day.

It’s a grief that doesn’t end.

Love, Loss, and Caregiving

Me and Jonny in the hospital

I grieve for who my son used to be, while loving who he is now. I grieve the dreams we both lost, while still showing up for the life we have. I grieve when he struggles, when I watch others reach milestones he cannot, and when the ordinary moments remind me how different our life is from what it once was and the future we had planned.

This is what’s known as ambiguous loss, when someone you love is still here, but changed in ways that break your heart.

Caregiving makes this grief even more complex. I am both grateful and devastated, both strong and exhausted. I love fiercely, but I also ache fiercely. Caregiving gives me purpose, but it also takes pieces of me I will never fully get back. I’ve lost not just my son as he once was, but parts of myself too.

The Weight of Anticipatory Grief

There is another layer, the grief that comes from what has not yet happened. I carry an awareness of what might come next, more medical complications, more dependency, a time when I will be too old to care for my son as I’m doing now, or an ending I cannot predict. I grieve ahead of time, and then I grieve again when reality arrives.

This kind of grief demands courage. It asks me to turn in an instant when life changes in an instant, to keep adapting, to keep showing up. While everyone's experience is different and personal, I also know I am not the only one who has had to do this. Many caregivers, parents, and loved ones have experience this turning as well.

When Caregiver Grief Feels Invisible

Another challenge of this grief is how unseen it often feels. There are not many words for it, no rituals to honor it, no easy way to explain what it means to live with grief that continues even while the person you love is still here.

And yet, every day, caregivers like me sit with the discomfort. We face what is, even when what is feels unbearable. That willingness to remain present, to love even when it hurts, is its own kind of courage.

What Grief Has Taught Me

Over time, I have come to see that grief is not only sorrow. It has also been a teacher.

It has taught me presence, to stop reaching for what should have been and pay attention to what is.

It has revealed unexpected beauty. A small triumph, a quiet laugh, a shared glance. These moments shine brighter because of the shadow.

It has deepened my knowing. That love is bigger than circumstance. That meaning can exist even in hardship. That life can hold wonder, even when reshaped by loss.

It has nurtured gratitude. I am grateful for my son’s life, for the love we share, for the time we still have, even while I miss, with equal intensity, all that was taken from us. Gratitude does not erase grief, but it can walk beside it.

For anyone carrying their own kind of loss, whether it looks like mine or not, grief and gratitude, sorrow and beauty, can exist together.

Holding Loss and Love Together

Jonny and Me on a Ferry

My grief is complex, ambiguous, anticipatory, and ongoing.

I love my son with everything I have, and it is because of that love that this grief runs so deep. But alongside the pain, there is resilience. There is courage. There is gratitude. There is beauty.

This is what it means to grieve while still living, to carry loss and love, sorrow and beauty, gratitude and longing, side by side, every single day. And if you have ever lived through a loss that does not end, perhaps you know something of this too?

If this reflection speaks to you, I invite you to share your own experience in the comments or pass it along to someone who may need it. Grief is something many of us carry quietly, and sometimes words can help us feel less alone. If you’d like to stay connected, you can also subscribe to receive future posts. Thank you for being here.