Grieving someone still here

You can grieve someone who has not died. When a person you love has dementia or a serious illness, you may feel loss long before the end. You may miss who they used to be, the life you shared, and the future you planned together.

This kind of grief is common, and it is real grief. This page explains why it happens, why it can feel so confusing, and what can help you carry it.

What is anticipatory grief?

Anticipatory grief is the mix of thoughts, feelings and reactions people have when they expect a death. It can affect family members, and it can affect the person who is ill.¹ For example, about 1 in 4 people with cancer that cannot be cured feel this kind of grief about their own coming death.¹

You may also hear it called pre-death grief or pre-loss grief. Some people call it "living grief." The words matter less than knowing you are not alone.

Common reasons people feel it:

• A loved one has a diagnosis such as Alzheimer's disease or another dementia, cancer, heart failure, ALS or advanced lung disease.
• A parent or spouse is slowly losing the ability to walk, talk or care for themselves.
• A loved one has moved into memory care or a nursing home. See moving a parent into care.
• The doctor has said time may be short, or hospice has been suggested.

Ambiguous loss: here, but not here

Dementia brings a special kind of grief. Your husband, wife, mother or father is still sitting across the table. But parts of them, such as their memory, their humor or their way of knowing you, may be fading. This is called ambiguous loss. It means the person is present in body but seems absent in mind or personality.² It is most often linked with dementia, brain injury and stroke.²

Ambiguous loss is hard for several reasons:

• There is no clear moment of loss. No funeral or ritual marks it, so others may not see that you are grieving.
• It keeps changing. You adjust to one loss, and then another comes. You may grieve more than once as the disease moves through its stages.³
• Good days can hurt too. A moment when the person seems like their old self is a gift. When the confusion returns, it can feel like losing them all over again.²
• Your role shifts. A spouse may become a caregiver. A grown child may start to parent their parent. You may feel unsure whether you are still a wife, a husband or a son in the same way.

Research supports how heavy this can be. In an older study of 70 dementia caregivers, those who saw their loved one as psychologically "gone" from the family had more symptoms of depression. How severe the dementia was did not predict depression in that study.⁴

What you might feel

There is no right way to feel. Common reactions include:

• Sadness that comes in waves, sometimes from small things like a missed birthday or a favorite song.
• Anger at the disease, at family members who do not help, or at the person who is ill. Then guilt for feeling angry.³
• Guilt about past conflicts, about enjoying your own life, or about decisions such as moving someone into care.³
• Wishing it were over. Many caregivers have this thought, then feel ashamed. It is a normal sign of exhaustion and love, not a lack of love.²
• Fear and dread about what is coming next.
• Loneliness, especially when you can no longer share your worries with the person you used to share everything with.
• Body signs like poor sleep, tiredness, headaches or appetite changes. See what grief can feel like.

You can feel love and anger, or sadness and relief, at the very same time. Holding both is not a failure.³

Does grieving early make the end easier?

Sometimes, and sometimes not. Some people find they grieve less at the time of death because they have been mourning for years. Others find the death hits even harder.²

Experts warn against thinking of grief as a fixed amount that you can "use up" early. Grief before a death is not simply grief after a death that started sooner.¹ Both kinds can be strong.

Time before a death can bring some good things, though. It can give families a chance to say what matters, settle old hurts, and plan for end-of-life choices.² In one study, parents who felt prepared for their child's death had better social functioning in the first two years afterward.¹

Who may grieve more strongly

A large 2022 review looked at grief in family caregivers of people with dementia. It pulled together 55 studies.⁵ It found that grief before death tended to be higher when the caregiver:

• Was the person's husband or wife
• Had less formal education
• Was caring for someone with advanced dementia
• Felt a heavy caregiving burden
• Had depression

The review also found that strong grief and depression before the death were the main signs of harder grief after the death.⁵ After the death, between about 1 in 16 and 1 in 4 caregivers (6% to 26%) had grief that became complicated and long-lasting, depending on the study.⁵ For more on this, see prolonged grief disorder.

This is not meant to worry you. It means that caring for your own grief now is one of the best ways to protect yourself later.

What can help

1. Name your losses. Write down what you miss: a shared joke, Sunday drives, being called by name. Naming losses helps you see that your sadness makes sense.²
2. Let both things be true. Try saying, "She is still here, and I miss who she was." You do not have to choose one feeling.
3. Talk with someone you trust. A friend, a faith leader or a counselor can help. If you look for a grief counselor, it is fine to talk with a few before choosing.³
4. Join a support group. Other caregivers understand without needing explanations. Groups meet in person, by phone and online. See support groups and peer support.³
5. Find new ways to connect. Music, old photos, hand-holding and simple shared tasks can still bring closeness. See meaningful activities and reminiscence and life review.
6. Get a break. Respite care and adult day care give you time to rest and grieve. See respite care.
7. Keep up your own life. Stay in touch with friends and keep doing a few things you enjoy. This lowers isolation.³
8. Use calming practices. Prayer, meditation, journaling or a small personal ritual can help.² Try the cyclic sigh or loving-kindness.

Counseling and group programs

Few treatments have been tested for grief before a death. Early research looks hopeful.

• Pre-loss group therapy Promising. A small 2021 pilot study tested a 10-session group led by social workers. It was for family members of nursing home residents with dementia. Each resident was expected to live 6 months or less. Members had less pre-loss grief, felt more prepared for the death, and felt less lonely.⁶ The study had no comparison group, so more research is needed.
• Therapy for caregiver depression and stress. If grief is mixed with depression, talk therapy can help. See treatment for depression and caregiver stress and burnout.

Hospice and palliative care support grief too

Palliative care focuses on comfort and quality of life at any stage of a serious illness. Hospice is comfort care near the end of life.

Medicare covers hospice for people with Part A whose doctors expect them to live 6 months or less.⁷ Hospice care can include grief and loss counseling for you and your family.⁸ Under federal rules, this support is offered both before and after the death.⁹ Hospices must offer bereavement services to the family for up to one year after the person dies.¹⁰

Many families wait until the last days to call hospice. Asking early gives you more time to use this support.

Free help lines

• Alzheimer's Association 24/7 Helpline: 800-272-3900, open day and night.³
• Eldercare Locator: 800-677-1116, to find local caregiver programs and your Area Agency on Aging.¹¹
• Family Caregiver Alliance: 800-445-8106.¹¹
• Well Spouse Association: 800-838-0879, for people caring for a husband, wife or partner.¹¹
• VA Caregiver Support Line: 1-855-260-3274, for caregivers of veterans.¹²

When to get help

Grief before a loss is normal. But sometimes it turns into something heavier. Talk with your doctor or a counselor if:

• You feel down or hopeless most days for two weeks or more. See depression.
• You cannot sleep, eat or take care of yourself.
• Grief is so strong that your own health or safety is at risk.³
• You are drinking more, or using pills to get through the day.
• You feel you cannot keep caring safely for your loved one.

Is it wrong to grieve someone who is still alive?

No. Grief is a response to loss, and you may be losing many things at once. Grieving does not mean you have given up on the person or love them less.

Why don't other people understand?

Ambiguous loss is often invisible to others. The person may look the same, and there is no funeral. Telling friends plainly, "I'm grieving the changes in my mom," can help them understand. Support groups are also full of people who already get it.

I feel relief sometimes. Does that make me a bad person?

No. Relief, or wishing the suffering would end, is a common reaction among caregivers.² It usually comes from exhaustion and from seeing someone you love struggle. It can sit right beside deep love.

Should I tell the person with dementia that I'm sad?

It depends on the person and the stage. In early dementia, some couples and families talk openly and grieve together. Later, it may be kinder to share your feelings with others and focus on calm, loving time together. See talking with someone who has dementia.

Will I grieve again after they die?

Probably, though it may feel different. Some people grieve less at the death, and some grieve more.² See grief and what grief can feel like for what often comes after.

Education only. This page is general information written from the sources listed. It is not medical, legal or financial advice and does not replace a doctor, therapist or lawyer who knows your situation. How we write and check pages.