Grieving Before Goodbye: Anticipatory Grief When Someone You Love Is Dying

You're sitting in the car outside, giving yourself one more minute before you go in. Or you're standing at the kitchen sink while the hospice nurse talks softly in the next room. They are still here. You can hear them breathing. And you already miss them so much it aches.

I'm a widow, so grief and I know each other. My loss didn't come with a season of goodbye, so I won't claim to have lived this one. But I've learned how lonely it is to carry a grief the people around you can't see, and grief before a death hides well, because the world usually waits for a funeral before it says "I'm so sorry."

So I want to say it now: what you're feeling has a name, it makes sense, and it doesn't mean you've given up on them. Below you'll find what this grief is, the feelings people are often afraid to say out loud, what research says truly helps, and ways to care for yourself and your person in the time you have.

Jump to: What it's called · Feelings nobody admits · What truly helps · Their grief too · Saying what matters · A long goodbye · When you know the day · When love is tangled · Every family · Taking care of you · For hospice teams

There's a Name for This

Grief that starts before a death is called anticipatory grief. The National Cancer Institute describes it as grief in the time leading up to a death, and it notes that the person who is dying can feel it too, not only the family. It can share many of the same feelings as grief after a loss.

Not everyone feels it, and that's all right too. If you're still holding on to hope, or you simply feel numb, nothing is wrong with you. Nobody walks toward a goodbye the same way.

For those who do feel it, it can last a long time. Researchers at the University of Surrey, working with St Christopher's Hospice in London, estimate that about one in four unpaid carers of older people grieve before the death. They link it to poor sleep, anxiety, depression and carers letting their own care slip, and they point out that most grief support is built for after a death. That's a UK estimate, but the gap it describes is just as real here.

The Losses Before the Loss

You may be surprised by how many goodbyes there are before the last one.

Researchers describe this grief as holding many losses at once, some already behind you and some still ahead. Behind you might be the way they used to laugh, the drives you took, the sound of them calling your name from the other room. Ahead is the future you pictured together. The Surrey team names the quieter losses too: a person's independence, their ability to recognize the people they love, the things they could once do.

Your own life changes as well. You may have gone from being their wife, their son or their best friend to being mostly the one who manages pills and appointments. Plans get canceled. Your time shrinks to almost nothing. It can help just to name these losses, even quietly to yourself. They are real, and they deserve to be grieved.

The Feelings Nobody Likes to Admit

Grief before a death can look a lot like grief after one. It may come in waves. You might feel worried all the time, tired in a way sleep doesn't fix, short-tempered and then ashamed of it, or strangely flat. You might find yourself in the cereal aisle unable to choose a box.

Part of you may wish it were over. If that thought has crossed your mind, please hear this: it is far more common than people admit, and it comes from love and exhaustion, not from wanting to lose them. When researchers followed the families of people with dementia through the last year of life, close to three in four caregivers called the death a relief for themselves, and nearly all felt it was a relief for the person who died. Relief and love can live in the same heart.

You may feel guilty for laughing. A funny memory, a good day, a moment of peace on the porch. Joy right now isn't a betrayal. It's part of what will carry you.

You may grieve someone who is still talking to you. And you may feel you're not "allowed" to, because they're still here. You are allowed.

What Truly Helps

For a long time, people believed that grieving early would make grief lighter later, as if you could get some of it "done" ahead of time. Newer research doesn't bear that out.

A 2016 review of caregiver studies found that grieving before the death did not make bereavement easier. What made a difference was something else: caregivers who felt prepared for the death tended to do better afterward, while those who were grieving hard and felt unprepared were more likely to struggle. The authors urged extra support for exactly those caregivers.

That's hopeful news, because feeling prepared is something you can build, one question at a time, and you don't have to build it alone.

Ask the hospice team what to expect. What changes might we see? What will tell us the time is getting close? Who do I call at two in the morning? Hospice teams expect these questions. Under Medicare rules, hospice counseling has to be available to the patient and the family to help with the stress of the illness and the dying process, so you can ask the social worker, chaplain or bereavement staff to talk with you now, not only after.

Learn what their wishes are, while you can. Where they'd like to be, who they'd like near, what matters to them about the service, where the important papers are. Every question you answer now is one you won't have to guess at later.

Let people in. Feeling ready isn't only practical. It also means having people to lean on, and letting yourself picture, gently, what life might look like afterward. That isn't disloyal. It's how hearts get ready.

They May Be Grieving Too

It's easy to forget, in all the caring, that the person who is dying may be going through their own version of this. The National Cancer Institute notes that anticipatory grief can be felt by the one who is dying, not just the people around them.

You don't have to have a big conversation. Sometimes a soft, open question is enough: "What's been on your mind lately?" or "Is there anything you're worried about?" Then follow where they go. Some want to talk about dying. Some want to talk about the ball game. Both are ways of saying goodbye.

If they want to plan their own service or say what matters to them, they may find comfort in our hospice planning guide, made for the person in hospice and whoever sits beside them.

Saying What Matters

The National Cancer Institute points out that time before a death gives families a chance to finish what feels unfinished: to say goodbye, I love you, or I forgive you. You might add thank you, or I'm sorry. Some families say all of them. Some say one, many times.

If the words won't come out loud, write them. A letter tucked under their hand, read aloud by you or a nurse, still counts.

And if they can no longer answer, keep talking. A small Canadian study measured the brain signals of hospice patients after they stopped responding, and some of those brains still reacted to sound, even close to the end. They can't say whether people understood the words. But the lead researchers encouraged families to keep speaking, in person or by phone. Your voice may still reach them.

Keeping Their Voice and Their Story

On a better day, you might ask them a few questions and simply listen. What makes you proudest? What should the little ones remember about you? Which day would you live again?

This kind of story-keeping can matter long after. In one study, dying patients spoke their memories and wishes to a trained listener, who turned them into a keepsake document. Afterward, 78 percent of family members said the finished document helped them in their grief, and 77 percent expected it to keep comforting them. You don't need a therapist to begin. A phone recording, a notebook or a few lines on the back of a photo is plenty. Our guide to legacy letters has gentle prompts, and Time Together has ideas for every energy level.

If your person seems frightened, our Sitting With Someone Who's Scared (en español) offers calm ways to stay close when fear shows up.

When the Goodbye Is Long

Some goodbyes take weeks. Others take years. When someone is very frail or living with several illnesses at once, the Surrey researchers note, this grief can go on for months or years, slow and uncertain, with no clear signposts.

With dementia, you may be grieving a person who no longer knows your name but still holds your hand. That loss is its own kind of heartbreak, and it has its own guide: Grieving While They're Still Here: Dementia and the Long Goodbye.

If the goodbye is long, you are allowed to pace yourself. You can't hold your breath for two years. Rest is part of loving them well.

When You Know the Day

Some families know the exact date. A treatment is being stopped on a set day, or, in places where it's legal, your person has chosen medical aid in dying.

Families in an Oregon study of grief after an assisted death described anxious waiting as the scheduled day came closer. Many also said knowing the date opened honest conversations and gave them a clear moment to say goodbye. If you're here, both the dread and the gratitude can be true at once. And if you didn't agree with their choice, your grief still counts, and it's worth talking through with someone you trust.

When Love Is Tangled

Some goodbyes come with old hurt attached. Some people are losing a parent who hurt them, an ex they still loved, or someone they'd drifted far from. Grieving what never was can be just as heavy as grieving what was.

You don't have to fix the relationship before they die. You can choose how close to come. These guides may help: Grief After a Complicated or Estranged Relationship and When a Parent's Trauma Shaped Your Childhood, and Now They're Dying.

Every Family Is Different

If there are children in the house. Children notice far more than we think, and they grieve before a death too. If a parent in your home is the one who is ill, begin with Telling Your Children a Parent Is Dying. If it's a grandparent or another person they love, there's Helping Children and Teens When Someone They Love Is in Hospice.

If you're their chosen family. A partner the world never fully recognized, a best friend, a neighbor who became family. Your grief is real whether or not anyone hands you a title. Ask the hospice team to include you, and let your person tell them who matters.

If faith is part of this, or isn't. Hospices are required to assess spiritual needs and to offer spiritual support in a way that fits the patient's and family's own beliefs, and to help bring in your own clergy or faith leader. If you have no faith, you can say no, or ask for a chaplain who will simply listen.

If you're far away. Phone calls, video calls and voice messages matter. The Canadian hearing researchers specifically said a voice on the phone counts. Ask someone close by to hold the phone to their ear. Your voice can still reach the bedside.

If you need an interpreter, spoken or signed. Health programs that receive federal money, which includes Medicare hospices, must offer qualified interpreters for free. You shouldn't have to rely on a child to translate hard news.

If your person served. Veterans and their families have their own support and honors near the end of life. Our guide for veteran families in hospice walks through them.

If your person is in prison. This grief has its own walls. Our guide for families with a loved one dying behind bars is there for your family.

If you're still working. A federal law called FMLA lets many eligible employees step away for as long as 12 weeks a year, unpaid but with their job protected, when a husband or wife, child or parent is seriously ill, and it can be taken a few hours or days at a time when that's medically necessary. Not every job qualifies, and some states offer more, so the Department of Labor's FMLA page is the place to check.

If you're doing this mostly alone. The Eldercare Locator can point you to local help, and the Family Caregiver Alliance has free information for family caregivers.

Taking Care of You

I know. You're reading this at midnight, and taking care of yourself sounds like one more chore. So let's keep it small.

Eat something, even toast. Step outside for five minutes while someone else sits with them. Let one thing go undone today.

When a friend offers help in general, hand them something specific: "Could you sit with Mom on Thursday afternoon?" or "Could you pick up her prescriptions?" Most people truly want to help. They just need to be told how.

Ask your hospice team about volunteers who can visit, and about respite care. Medicare's hospice benefit can cover a short inpatient stay for your person so the caregiver can rest. Taking that break is not abandoning them. It's how you keep going.

For more on the day-to-day side, see Caring for Someone in Hospice: Support and Self-Care for Every Family Caregiver.

When the Weight Is Too Much

Heavy grief and exhaustion are expected right now. Still, call your hospice social worker, your doctor or a grief counselor when you can't sleep or eat most days, if you feel hopeless or completely alone, if you're leaning on alcohol or pills to get through, or if your own health is slipping. The 2016 review found that caregivers grieving intensely and feeling unprepared were the ones most likely to struggle after the death, so getting help now is a gift to the person you'll be later.

If you start thinking about not wanting to live, please call or text 988. Someone answers around the clock.

What Can Wait

Sorting their clothes. Selling the car. Deciding about the house. Whether you "should" feel more ready than you do. Figuring out who you'll be afterward. All of that can wait its turn.

What can't really wait is small: a few words you want them to hear, a little rest for you, and one person you let in.

Love and Grief in the Same Room

You are doing two of the hardest things a person can do at once: loving someone and losing them. Some days the love will be louder. Some days the grief will be. Neither one cancels the other.

Whatever you manage to say, whatever you manage to do, sitting with them is already a kind of goodbye. Be as gentle with yourself as you are with them.

For Hospice Teams

If you care for families like these, our one-page staff card, Noticing Grief Before Goodbye, offers gentle questions to ask caregivers, what to offer them now, and when to bring a family to the team's attention. It's free to print and share.

More Help

• Caring for Someone in Hospice: Support and Self-Care for Every Family Caregiver
• Time Together: Bedside Activities for Hospice Families
• Grieving While They're Still Here: Dementia and the Long Goodbye
• What to Expect in the Final Days
• Telling Your Children a Parent Is Dying
• All our Free Printables

Please note: This guide is general information, not medical, mental health or legal advice. Their hospice or medical team is the best place for care questions. For your own health and grief, lean on your doctor, a counselor or the hospice social worker.

If you are in crisis, call or text 988. For Spanish, press 2. Veterans, press 1. In an emergency, call 911.

With care,
C. Lindorfer, Noted & Charmed