Caregiver Grief: Anticipatory Grief and Coping After Loss

Grief does not wait for a death. If you are caring for a parent whose memory, health, or independence is slipping away, the sadness you feel now, while they are still here, is real grief, and it has a name: anticipatory grief. Grief and mourning are the normal process of dealing with a loss, and anticipatory grief is the grief that comes before a death, often felt by the family as much as by the person who is dying.1 Caregiver grief is not a sign that you are giving up or thinking the worst. It is what it feels like to love someone you are slowly losing, and it deserves the same care you would give any other kind of grief.

In This Guide

• Key Takeaways
• What Caregiver Grief Is
• Anticipatory Grief: Grieving a Parent Who Is Still Here
• The Guilt, Relief, and Anger That Come With It
• Grief After the Death of a Parent You Cared For
• Where to Find Caregiver Grief Support
• Frequently Asked Questions
• Learn More

What Caregiver Grief Is

Grief and mourning are the normal process of dealing with a loss, and loss does not only mean death. For a family caregiver, the losses often start long before the end: the parent who used to give advice and now needs help with the checkbook, the one who no longer recognizes a grandchild, the roles quietly reversing. Grieving those losses is not premature or disloyal. It is grief.

It helps to know that grief comes in recognized shapes. The National Cancer Institute describes three: anticipatory grief, which occurs before a death; normal or common grief, which begins soon after a loss and whose symptoms ease over time; and complicated grief, which lasts longer than normal grief.1 Naming which one you are in is not about labeling yourself; it is about knowing that what you feel is a described, understood human experience, and that the kind of grief that does not lift over time is exactly the kind worth bringing to someone who can help.

Anticipatory Grief: Grieving a Parent Who Is Still Here

Anticipatory grief is grief that occurs leading up to a death, and it may be felt by the dying person or by the person's family, though it does not affect everyone.1 For caregivers, it is one of the most common and least talked-about parts of the job.

It shows up in specific ways. You may find yourself mourning the parent you used to have while sitting next to the parent you have now. With a progressive illness like dementia, the person is present but changed, and the grief can come in waves with each new loss, a skill gone, a memory gone, a piece of the relationship gone. This can feel confusing precisely because your parent is still alive; it can seem wrong to grieve someone who is right there. It is not wrong. Anticipatory grief is the mind's honest response to a loss that is already happening, and letting yourself feel it, rather than scolding yourself for it, is part of caring for both of you. Our guide to late-stage dementia care covers the practical side of that final stretch.

The Guilt, Relief, and Anger That Come With It

Caregiver grief is tangled up with feelings that can be hard to admit, and that is normal. There is no single right or wrong way to mourn.1 Common reactions to a loss include feeling numb, shocked, or fearful, feeling guilty for being the one who is still alive, and even feeling angry at a loved one for leaving.1

Two feelings deserve to be said out loud, because caregivers so often hide them. The first is relief. After a long illness, feeling relief when it ends, that your parent is no longer suffering, or that the relentless caregiving is over, is not a betrayal of your love. It can sit right alongside deep grief. The second is guilt: guilt over the relief, guilt over a moment of impatience, guilt over what you did or did not do. Guilt is one of the recognized, normal reactions to loss, not evidence that you failed. Treating these feelings as human rather than shameful is what lets you carry them instead of being crushed by them.

Grief After the Death of a Parent You Cared For

When a parent you cared for dies, the grief can be complicated by the very intensity of the caregiving. You may have been so focused on tasks and decisions that the feelings arrive late, or all at once. The role that organized your days is suddenly gone, which is its own disorienting loss on top of the death itself.

Normal or common grief begins soon after a loss and its symptoms ease over time, while complicated grief lasts longer than normal grief.1 There is no fixed timetable, and no right speed. But grief that stays severe, or that keeps you from functioning long after the loss, is a signal to reach for more support rather than to wait it out alone.

Where to Find Caregiver Grief Support

You do not have to grieve without help, and some of the help is already paid for.

• Hospice bereavement services. The Medicare hospice benefit includes grief and loss counseling for the patient and their family as one of its services. Hospice professionals can provide grief counseling, sometimes called bereavement support, to the family of someone who was under their care, and you can ask hospice for that support even if hospice was not used before the death.2 That support does not end at the death: under Medicare's hospice rules, the hospice must make bereavement services available to the family for up to a year after the patient dies, so if your parent was on hospice, it is worth asking what is still available to you.4
• Grief counseling and therapy. A counselor or therapist who works with grief can help, particularly when grief is complicated or not easing. Your primary care doctor can be a starting point for a referral.
• Caregiver and grief support groups. Sitting with other people who have carried the same load, and the same loss, often helps as much as anything. Our guide to caregiver support groups explains how to find one, including groups run by hospices and disease-specific organizations.
• Your local Area Agency on Aging. The aging network can point you to counseling and support in your community; reach yours through the Eldercare Locator at 1-800-677-1116.3

Grief is not a problem to be solved on a schedule. But you were not meant to carry it alone, and reaching for support is not weakness. It is the same care you spent so long giving someone else, finally turned toward yourself. If the caregiving itself has worn you down, our guide to caregiver burnout covers that side too.

Learn More

Find personalized help finding grief and caregiver support in your area at brevy.com.

The information on Brevy.com is for educational purposes only and is not a substitute for professional legal, financial, or medical advice. Rules vary by state and program and change frequently. Always verify with the relevant agency or a qualified professional. Brevy is not a law firm, financial advisor, or healthcare provider.