For Fellow Caregivers
You are not alone in this.
I want to acknowledge the real skill and toll of this work. Not just the tasks, but the level and quality of attention it requires—the attention we learn to give to gaze and breath, to gait and judgment, to mood and expression, and to the quiet losses others may never notice.
This work demands presence, patience, stamina, sense-making, and selflessness, again and again. It is tiring. It is hard. It is largely invisible.
I honor you for what you give, and for what it costs you to love this deeply.
Trusted Organizations
These organizations helped me find my footing. I hope they offer you the same steadiness they offered me.
Online Communities
Alongside these organizations, I found something equally important: other caregivers.
These online communities became a source of practical advice, compassionate support, and shared understanding throughout my caregiving journey. I continue to learn from them today, returning when I need the wisdom of people who truly understand this path.
Naming It
Words for What You May Be Experiencing
Sometimes having a name for what we’re carrying helps us understand what is happening to us.
Ambiguous Loss
Grief without a clear ending. The person you love is still here, yet parts of who they were — and who you were together — may be disappearing.
You are living with presence and absence at the same time.
Compassion Fatigue
The depletion that can come from giving care, attention, patience, and love when little comes back to replenish you. You may feel numb, detached, impatient, or resentful.
Sometimes feeling less is a sign of how much you’ve been feeling for how long.
Caregiver Identity Loss
When caring for someone else becomes so consuming that your own life becomes harder to see. Your relationships, interests, and sense of self may recede until you wonder:
Who am I besides the person who takes care of them?
Disenfranchised Grief
Grief that isn’t fully recognized or understood by others. There may be no ritual for losing a conversation, shared memories, a familiar personality, or the relationship you once had.
The losses are real even when no one knows to acknowledge them.
Sometimes the hardest parts of caregiving become even harder when we mistake an experience for a failure of character.
More Than One Thing Can Be True.
You can love them
and be exhausted.
You can want more time
and want this to end.
You can grieve what is gone
and love what is still here.
There is room for all of it.
These are not contradictions to resolve. They are part of loving someone through change.
- Love
- Anger
- Tenderness
- Resentment
- Exhaustion
- Grief
- Relief
Still Here
A Few Questions to Sit With
Dementia can train our attention toward what is disappearing. But the person we love is more than what has been lost.
There are no right answers. Just an invitation to notice.
- What still brings them joy?
- Where do you still recognize them?
- What can you still learn from them?
- How has your connection changed?
- What is still here?
Same love. Different colors. Still here.
If you're looking for companionship in the caregiving journey, you may also find it in Held in the Vanishing.