Grief While Caregiving

Your parent is alive, yet you're grieving. The mother who remembered every birthday now doesn't recognize you. The father who built your treehouse can't walk to the mailbox. You're mourning someone who's still here—and society doesn't know what to do with that.

This grief is real, valid, and often invisible. Understanding it can help you process the losses while continuing to provide care.

Understanding Anticipatory Grief

What It Is

Anticipatory grief is mourning that occurs before a death. For caregivers, it often involves:

• Grieving who your parent was
• Grieving the relationship you had
• Grieving your own lost life
• Grieving the future you expected
• Grieving incrementally as each ability is lost

Why It's Complicated

• They're still alive: Society only recognizes grief after death
• Guilt: "How can I grieve when they're still here?"
• Ambiguity: The person exists but isn't fully "there"
• Ongoing: Each new loss triggers fresh grief
• Isolation: Others don't understand or are uncomfortable

It Comes in Waves

Grief isn't constant. It may hit when:

• They don't remember your name
• They can no longer do something they once loved
• You see a photo of them "before"
• Holidays remind you of how things used to be
• You realize you're parenting your parent

The Many Losses

Loss of the Parent You Knew

• Their personality changes
• Their memories fade
• Their abilities disappear
• Their role in your life shifts
• Who they were seems to be slipping away

Loss of Your Relationship

• Conversations become one-sided
• They can no longer give you advice
• The parent-child dynamic reverses
• Shared history is forgotten
• The person who knew you best no longer does

Loss of Your Own Life

• Career opportunities missed
• Social life diminished
• Personal time eliminated
• Financial resources depleted
• Your identity consumed by caregiving

Loss of the Future

• They won't see grandchildren graduate
• Retirement plans with them won't happen
• The relationship won't improve or heal
• Time is running out

Common Feelings

Guilt

• "I shouldn't feel this way when they're alive"
• "I should be doing more"
• "I sometimes wish this was over"
• "I resent them and feel terrible about it"

All of these feelings are normal. Thinking them doesn't make you a bad person.

Anger

• At the disease for taking them
• At the healthcare system
• At family who doesn't help
• At your parent (even when you know it's not their fault)
• At yourself

Relief

• When they have a good day
• When they're asleep and you have quiet
• At thoughts of it being over—followed by guilt

Relief is not betrayal. It's a human response to an exhausting situation.

Loneliness

• Even when you're with them constantly
• Missing the person they were
• Feeling like no one understands
• Being physically present but emotionally isolated

Coping Strategies

Acknowledge the Grief

• Name it: "I'm grieving"
• Stop telling yourself you shouldn't feel this way
• Allow tears when they come
• Write about your losses
• Talk to someone who understands

Find Your People

• Support groups: In-person or online caregiver groups
• Therapist: Especially one experienced in caregiver issues
• One trusted friend: Who can handle the real truth
• Other caregivers: They understand like no one else

Create Rituals

• Look at old photos together (even if they don't remember)
• Play their favorite music
• Tell them stories from the past
• Celebrate small moments
• Mark transitions consciously rather than just enduring them

Honor What Remains

• Find connection in whatever form is possible
• Focus on moments of presence, not lost memories
• Look for who they still are, not just who they were
• Hold their hand even if they don't know whose hand it is

Taking Care of Yourself

Physical Self-Care

• Sleep matters—grief is exhausting
• Eat, even when you don't feel like it
• Move your body somehow
• Get outside occasionally
• Don't neglect your own health

Emotional Self-Care

• Allow yourself to feel without judgment
• Take breaks from caregiving when possible
• Do something just for you, even briefly
• Express creativity—writing, art, music
• Practice self-compassion

Give Yourself Permission

• To cry
• To feel angry
• To wish things were different
• To laugh and feel joy
• To take breaks
• To not be okay sometimes

Special Situations

When They Don't Recognize You

This is one of the deepest wounds of dementia caregiving. Strategies:

• Allow yourself to grieve this loss specifically
• Remind yourself they may still feel comfort from your presence
• Find value in being a source of kindness, even anonymously
• Don't quiz them—accept where they are
• Know that your love and care still matter

When They Say Hurtful Things

Disease can change personality, remove filters, surface old conflicts:

• Remember this is the disease, not them
• Don't take it personally (easier said than done)
• Step away when you need to
• Process hurt feelings with a therapist or support group

Long-Distance Caregiving

Grief from afar has its own challenges:

• Guilt about not being there
• Each visit shows more decline
• Fewer daily moments of connection
• Anticipating the call that changes everything

Strained Relationships

Grieving is complicated when the relationship was difficult:

• You may grieve what you never had
• Mixed feelings are normal
• Caring for them doesn't require forgiving past wrongs
• Therapy can help process complex feelings

After They Die

Anticipatory Grief Doesn't Replace Regular Grief

• Death still brings its own grief
• Some feel relief (and then guilt about relief)
• Some feel the "real" grief only begins after
• There's no "right" way to feel

The Transition Can Be Strange

• Identity shift: "Who am I without caregiving?"
• Time seems different
• Mixed feelings about freedom
• Missing even the hardest parts