Journey through Grief: Understanding the Mourning Process While Caregiving

Caring for a loved one living with dementia often brings grief long before death occurs. It’s the grief of watching memories fade, abilities diminish, and the person you’ve known slowly change. This ongoing sorrow—sometimes called anticipatory grief—is a common but often unspoken part of caregiving. Understanding the mourning process while caregiving can help you honor your emotions and care for yourself along the way.

Recognizing Anticipatory Grief

Unlike traditional grief that follows a loss, anticipatory grief begins while your loved one is still alive. You may grieve the conversations you can’t have anymore, the shared activities that are no longer possible, or the future milestones you know won’t happen together. These feelings can surface suddenly and may leave you feeling guilty or confused. Naming this grief for what it is can bring relief—it validates that your sorrow has a real source.

The Many Faces of Grief

Grief isn’t a straight line. As a caregiver, you might cycle through different emotions in the same day—or even the same hour. Common experiences include:

• Sadness and longing for the person they once were
• Frustration or anger at the illness, the situation, or even yourself
• Guilt for feeling exhausted or for wishing things were different
• Moments of joy or gratitude for small connections that still shine through

All of these responses are part of the grieving process. There’s no “right” way to grieve.

Balancing Grief with Caregiving Responsibilities

One of the hardest parts of grieving while caregiving is that life doesn’t pause. You’re still managing daily routines, appointments, and emotional support for your loved one. That constant responsibility can leave little room for your own mourning.

Try to create small pockets of space for yourself:

• Take a short walk when emotions feel heavy.
• Write in a journal to give your feelings somewhere to land.
• Connect with a friend, counselor, or support group who understands dementia caregiving.

Remember, tending to your grief isn’t selfish—it helps you sustain your strength as a caregiver.

Finding Ways to Honor Your Loved One Now

Even as dementia changes your loved one, you can still find ways to honor who they are and who they have been. Share old stories, look through photo albums, listen to their favorite music, read special passages, or cook a cherished recipe together. These moments don’t erase the grief, but they can soften it with meaning and connection.

Preparing for Future Loss

Acknowledging grief now can help you prepare emotionally for the time ahead. Hospice or palliative care teams often provide emotional and spiritual support not just for the person living with dementia, but for family members, too. Reaching out early can give you more tools and companionship as you navigate both caregiving and mourning.

Grief and love walk hand in hand in dementia caregiving. By allowing yourself to feel sorrow while still showing up in care, you’re honoring the depth of your relationship. Mourning during caregiving is not a sign of weakness—it’s a testament to the strength of your love.

You are not alone in this journey. Support is available, and your feelings are valid every step of the way.

If you need dementia caregiver support, please join my dementia support group or schedule your 30-minute consultation.