Anticipatory Grief: How to Cope When You’re Grieving Someone Still Alive

I’ll never forget those four months.

From October 2019, I watched my father slowly deteriorate. He’d lost weight, then came the diagnosis, lung cancer, back again, progressing fast. What followed was months of travelling back and forth to Norfolk, caring for both him and my stepmother, watching him lose his independence piece by piece.

I was grieving him before he died. Every visit felt like another goodbye. Every phone call left me dreading the next one. I was mourning the father I’d only just got back, and he was still here.

He passed on 6th March 2020. And in those final months before his death, I experienced something that millions of people go through but rarely have a name for: anticipatory grief.

I’m Lucy Cole, founder of Love Life Coaching & Events in Sutton Coldfield and an award-winning grief coach. I’ve supported many people through anticipatory grief, and I’ve lived it myself. If you’re watching someone you love fade away (through terminal illness, dementia, or a progressive condition) this article is for you.

Your grief is real. It’s valid. And you don’t have to wait for someone to die before you’re allowed to fall apart.

What Is Anticipatory Grief?

Anticipatory grief is the grief you experience before a loss occurs.

It’s the mourning that happens when you know death is coming. Not as a distant, abstract possibility, but as a real, approaching reality. It’s common when:

• A loved one receives a terminal diagnosis
• Someone you love has advanced dementia or Alzheimer’s
• A family member is living with a progressive illness (Parkinson’s, motor neurone disease, end-stage heart failure, cancer)
• You’re supporting someone through a long, slow decline
• A relationship is ending that you know cannot be saved
• You’re facing your own terminal diagnosis

The term was first coined by psychiatrist Erich Lindemann in 1944, and it’s now well-recognised in grief research. Anticipatory grief is not “pre-grieving” or “borrowing grief from the future.” It is grief, happening right now, in response to real losses that are already occurring.

Why Anticipatory Grief Feels So Complicated

Unlike grief after death (which has a clear beginning point) anticipatory grief exists in a peculiar in-between space. You’re mourning someone who is still alive. You love them, you can still speak to them, hold their hand, share moments. But you’re also losing them, gradually, in ways that are undeniable.

This creates a particular kind of emotional complexity that’s difficult to explain to people who haven’t experienced it.

You’re Grieving Losses That Are Already Happening

Anticipatory grief isn’t about the future death alone. You’re already grieving:

• The person they were before illness changed them
• The relationship you had that no longer exists in the same form
• Their independence, their vitality, their personality (especially devastating in dementia)
• Your own freedom and lifestyle as caregiving takes over
• The future you’d planned together, holidays, milestones, ordinary days
• Their role in your life (the parent who protected you, the partner who was your team)
• Your sense of safety and security in the world

Each of these is a genuine loss. Grief is the appropriate response.

You’re Living in Two Realities at Once

You must simultaneously:

• Be present with your loved one, making the most of remaining time
• Plan practically for what comes after (finances, funeral wishes, care arrangements)
• Continue functioning in the rest of your life (work, children, relationships)
• Process enormous emotional pain, often without adequate support

This dual existence is exhausting in a way that’s hard to articulate. You feel grief-stricken, yet you’re expected to keep going.

Society Doesn’t Recognise It

When someone dies, people rally around you. Cards arrive. Casseroles appear on the doorstep. Colleagues offer condolences. There are rituals (funerals, wakes) designed to acknowledge and contain loss.

When someone is dying? The world largely carries on. Your grief is invisible. People might ask how your loved one is doing, but they rarely ask how you are.

This lack of social recognition (what grief researchers call disenfranchised grief) makes anticipatory grief profoundly lonely.

The Emotions of Anticipatory Grief

Anticipatory grief is not a single emotion. It’s a tangle of feelings that can change hour to hour, sometimes all present at once.

Grief and Sadness

A deep, aching sadness for the person you’re losing. Not just who they will become in death, but who they’re already ceasing to be. Grief for conversations you used to have. For the version of them that existed before the illness took hold.

Anxiety and Dread

Constant, low-level fear. What will the next phone call bring? How will I cope when they’re gone? What if they’re in pain? What if I’m not there at the end? What if I say the wrong thing?

Anticipatory grief often comes with hyper-vigilance. A state of heightened alert where you’re always scanning for signs of deterioration.

Guilt

Guilt is one of the most painful aspects of anticipatory grief, and it comes in many forms:

“How can I be grieving them when they’re still alive? Does that mean I’m giving up on them?”

“I’m already thinking about life after they’re gone. What kind of person does that make me?”

“Sometimes I wish it would just be over so we’re not all suffering anymore. I’m terrible for thinking that.”

“I haven’t visited enough. I’m not doing enough. I’m failing them.”

Let me be absolutely clear: None of these thoughts make you a bad person. They make you a human being under extraordinary strain. The wish for suffering to end (your loved one’s and your own) is an act of compassion, not abandonment.

Pre-emptive Loneliness

You’re already rehearsing life without them. You notice the chair where they always sat. You think “this is the last Christmas,” or “they’ll never meet the grandchild I’m expecting.” You’re practising an absence that hasn’t yet arrived.

This forward-looking grief is a natural psychological response. Your mind is, in some sense, trying to prepare you.

Exhaustion and Depletion

Caregiving is physically and emotionally depleting. But even if you’re not the primary carer, anticipatory grief is exhausting in its own right. Sustained emotional pain, broken sleep, constant worry, and the effort of holding everything together takes an enormous toll on the body.

Many people describe a bone-deep tiredness that no amount of sleep seems to fix.

Anger

Anger at the illness. Anger at the unfairness of it all. Anger at other family members who aren’t pulling their weight. Anger at your loved one (yes, this is normal) for leaving you. Anger at a God or universe that would allow this. Anger at yourself for feeling angry.

Anger is grief turned outward. It’s not wrong. It’s human.

Love. Intensified

Alongside all of this, many people describe an intensification of love. The knowledge that time is limited makes moments more precious. Conversations become more tender. Ordinary experiences (a cup of tea together, a hand held, a shared memory) take on extraordinary weight.

This bittersweet love (so fierce because it’s so finite) is one of the most profound experiences a human being can have.

Anticipatory Grief in Specific Situations

Terminal Illness

A terminal diagnosis changes everything. The world you knew, where the future was open, suddenly has a horizon. Time becomes both precious and painful.

Particular challenges:

• Fluctuating hope (a better day can feel cruel because it can’t last)
• Medical appointments, treatment decisions, the language of prognosis
• Watching physical decline, often including pain and loss of dignity
• Practical discussions that feel like giving up (wills, funeral wishes, care plans)
• The “not knowing”. Weeks? Months? Years?

What helps:

• Allow yourself to feel grief without waiting for “the right moment”
• Seek information about what to expect (many people find knowledge reduces anxiety)
• Prioritise meaningful time rather than “making everything normal”
• Consider hospice support early. They support the whole family, not just the patient
• Accept that some conversations can’t wait. Having them is a gift, not a betrayal

Dementia and Alzheimer’s

Dementia presents a particular form of anticipatory grief, sometimes described as the “long goodbye.” You are losing someone incrementally, their memories, their recognition of you, their personality, while their body remains present.

Unique challenges:

• Grieving someone who is still physically alive but increasingly absent
• Losing the relationship (they may no longer know who you are)
• Mourning shared memories that only you now hold
• Caregiver burden that can last years or decades
• Ambiguous loss. No clear death to grieve, yet profound ongoing loss

What helps:

• Connect with dementia-specific support organisations (Alzheimer’s Society, local carers’ groups)
• Grieve the losses as they occur. Don’t postpone grief until physical death
• Focus on what remains. Moments of connection, presence, sensory experience
• Seek respite care to prevent total caregiver burnout
• Recognise that your grief is real even though your loved one is alive

It is valid and necessary to grieve a person with dementia while they are still living. This is not a betrayal of them. It is an honest response to real loss.

Progressive Conditions

Motor neurone disease, Parkinson’s, multiple sclerosis, heart failure, COPD, conditions that progress over time bring an ongoing experience of loss. Each stage of deterioration brings new grief.

The particular challenge here is that grief must be repeatedly processed as each new loss occurs. There is no single moment of reckoning. It is an ongoing, cumulative experience.

A Child’s Life-Limiting Illness

Parents facing a child’s terminal or life-limiting illness experience anticipatory grief of unimaginable intensity. This is considered one of the most profound losses a human being can face. Loss that goes against the natural order, where children are supposed to outlive their parents.

The isolation of this experience is acute. Very few people know what to say. Support is inadequate. And the anticipatory grief is tangled with ongoing caregiving demands that leave almost no space for parents to process their own pain.

If you are in this situation, please seek specialist support. You should not be carrying this alone.

The Caregiver’s Experience

If you are also caring for the person who is dying, anticipatory grief is compounded by the physical, emotional, and logistical demands of caregiving.

Caregiver Burnout

Caregiver burnout is a state of physical, emotional, and mental exhaustion that results from the sustained demands of caring for someone with a serious illness. Signs include:

• Constant exhaustion that doesn’t improve with rest
• Feeling hopeless, helpless, or trapped
• Neglecting your own health and needs
• Withdrawing from your own relationships
• Feeling resentful of the person you’re caring for (and then feeling guilty about it)
• Physical symptoms. Headaches, digestive problems, lowered immunity
• Loss of pleasure in things you used to enjoy

Caregiver burnout is not weakness. It is the predictable result of an extraordinary burden without adequate support.

The Guilt of Needing a Break

Many carers feel intense guilt about needing respite, time away from caregiving. “How can I go on holiday when they’re suffering?” or “What if something happens while I’m not there?”

Here is the truth: You cannot pour from an empty vessel. Taking care of yourself is not abandoning your loved one. It is ensuring you can continue to be there for them.

Your Grief Matters Too

In the focus on the person who is dying, the carer’s grief is often overlooked, including by the carer themselves. You may feel that your grief is less important, or that you don’t have the right to fall apart when you’re needed.

You have every right to grieve. You are losing someone too.

How to Cope with Anticipatory Grief

1. Name It

Simply naming what you’re experiencing (“this is anticipatory grief”) can be profoundly validating. You’re not going mad. You’re not being dramatic. You’re experiencing a recognised, real form of grief.

Naming it also helps you explain it to others, and may help you access more appropriate support.

2. Allow the Grief to Be Present

One of the most common responses to anticipatory grief is to push it away. To focus on practicalities. To stay busy. To tell yourself, “I’ll fall apart later.”

But grief suppressed doesn’t disappear. It accumulates.

Give yourself permission to feel what you feel. This doesn’t mean you must be constantly overwhelmed, it means you allow the emotions in, in manageable doses, rather than damming them up until they flood.

You’ve got to feel it to heal it.

3. Find Someone Who Will Listen. Really Listen

Not someone who will fix it, minimise it, or tell you to “stay positive.” Someone who will sit with you in the pain without flinching.

This might be:

• A trusted friend who doesn’t need you to be okay
• A grief coach or therapist with experience in anticipatory grief
• A support group for carers or families of those with the relevant condition
• An online community of people in similar situations

You should not carry anticipatory grief in silence.

4. Communicate With Your Loved One (If Possible)

Some of the most meaningful work in anticipatory grief happens in honest conversation with the person who is dying. When they’re able to have those conversations.

This might include:

• Saying what you need to say (love, gratitude, apologies, forgiveness)
• Listening to what they need to say
• Asking about their wishes, fears, hopes for what comes after
• Simply being present together, without pretending

These conversations are hard. They are also among the most important of your life, and many people say they are the ones they’re most grateful for.

Not all of these conversations will be possible. Illness, dementia, or family dynamics may make some or all of them inaccessible. If that’s the case, writing a letter (even one never sent) can help.

5. Take Care of Your Body

Grief lives in the body. Anticipatory grief, sustained over months or years, takes a serious physical toll.

Prioritise:

• Sleep, even if broken, rest when you can
• Eating regularly, even when appetite is poor
• Movement, walks, gentle exercise, anything that gets you out of your head
• Limiting alcohol and other substances (they amplify depression and anxiety)
• Medical check-ups. Carers often neglect their own health completely

6. Seek Out Moments of Joy Without Guilt

You are allowed to laugh. You are allowed to enjoy a meal, a film, a friend’s company. You are allowed to have good days.

Joy during anticipatory grief is not betrayal. It is survival. It is what allows you to keep going.

When joy arises, let yourself have it.

7. Accept Practical Help

One of the most concrete ways to reduce the burden of anticipatory grief is to let other people help with practical tasks. This might mean:

• Accepting meals or grocery deliveries
• Letting someone else handle logistics you can’t manage
• Asking for help with childcare, housework, errands
• Using professional care services rather than doing everything yourself

“I’m fine, I can manage” often means “I’m drowning and too exhausted to ask for help.”

8. Plan, But Don’t Disappear Into Planning

Some anticipatory grief manifests as hyperactive planning. Obsessive organisation of practical matters as a way of feeling in control. This can be useful (having affairs in order reduces panic later) but it can also become a way of avoiding emotional processing.

Do the practical things. Then put them down and be present.

9. Consider Professional Support

Anticipatory grief often goes unsupported because it’s invisible. But its effects on mental health, physical health, relationships, and quality of life are serious.

Consider professional support if:

• You’re struggling to function in daily life
• Your own health is suffering significantly
• You have no one to talk to
• You’re experiencing severe anxiety, depression, or thoughts of self-harm
• The grief feels stuck or overwhelming
• You’re a carer approaching burnout

At Love Life Coaching & Events in Sutton Coldfield, I offer grief coaching specifically for anticipatory grief, including trauma-informed approaches and practical emotional tools to help you cope with what is one of the most demanding experiences a person can face.

Anticipatory Grief and Complicated Grief

It’s worth noting that anticipatory grief, if unsupported, can develop into complicated grief after the death occurs. The prolonged stress of anticipatory grieving, combined with caregiver burnout, social isolation, and lack of support, creates conditions in which grief after death can become stuck and overwhelming.

If you’re supporting someone through a long illness, getting support NOW, before the death, is one of the most important things you can do to protect your own wellbeing long-term.

For more on what happens when grief becomes stuck after a loss, see our article on complicated grief.

After the Death: When Anticipatory Grief Doesn’t Prepare You

Many people assume that because they’ve been grieving anticipatorily, the death itself will be less shocking, or the grief afterwards will be less acute.

This is often not the case.

Research on anticipatory grief shows that it does not necessarily reduce grief after death. It is a different kind of grief running alongside, not instead of, the grief that follows.

When death finally comes, you may experience:

• A second, fresh wave of profound grief
• Relief (which then brings its own guilt)
• A strange disorientation. The waiting is over, now what?
• Grief for the caregiving role itself (which suddenly no longer exists)
• Physical and emotional collapse as the adrenaline of caregiving runs out

Give yourself permission to grieve fully after the death, even if you’ve been grieving for a long time already.

Understanding how long grief lasts and what a “normal” grief timeline looks like can help you be compassionate with yourself in the period that follows. See our article on how long grief lasts.

You Are Not Alone In This

Anticipatory grief is one of the most isolating experiences a person can have. You’re in a liminal space, not yet bereaved, but already grieving. Society doesn’t quite know what to do with you.

But you are not alone. And you are not falling apart. You are doing one of the hardest things a human being is asked to do: loving someone through their dying.

That love (fierce, exhausted, aching, beautiful) is the source of the grief. And it is worth it.

Get Support for Anticipatory Grief

You don’t have to navigate this alone. At Love Life Coaching & Events in Sutton Coldfield and Birmingham, I offer compassionate grief coaching for anticipatory grief, including:

• Individual coaching sessions for carers and family members
• Trauma-informed support for those watching a loved one decline
• Practical emotional tools to help you cope day to day
• Support through the grief that follows a death after a long illness
• NLP and hypnotherapy approaches for anxiety, guilt, and emotional exhaustion

Whether you’re at the beginning of a loved one’s illness or deep in the final stages, it’s never too early or too late to seek support.

📞 Call or text: 0121 387 3727 

🌐 Visit: www.lovelifecoaching-events.co.uk 

📧 Email: lucy@lovelifecoaching-events.co.uk 

📍 Clinic: The Vesey, Private Hospital, Unit 3, Reddicap Trading Estate, Sutton Coldfield, B75 7BH

Serving Birmingham, Sutton Coldfield, Four Oaks, Boldmere, and the West Midlands. Online sessions available UK-wide.

Frequently Asked Questions

Is anticipatory grief the same as grief after death? They are related but different. Anticipatory grief happens before the loss and exists alongside ongoing connection with the person who is dying. Grief after death begins at the moment of loss. Having experienced anticipatory grief does not mean you won’t grieve deeply after the death.

Does anticipatory grief mean I’m giving up on my loved one? Absolutely not. Grieving someone who is dying is not giving up on them. It is an honest emotional response to real losses that are already happening. You can grieve and still fight for them, still hope, still love them fully.

I feel relieved when I imagine the death being over. Does that make me a terrible person? No. It makes you a human being who is exhausted and watching someone you love suffer. The wish for suffering to end (yours and theirs) is an act of compassion. Many carers and family members feel this, and almost all feel guilty about it. Please be gentle with yourself.

How do I support a child who is experiencing anticipatory grief? Be honest and age-appropriate. Allow them to ask questions. Include them in what’s happening rather than shielding them completely. Let them see that adults also grieve, and that it’s okay. For detailed guidance, see our article on helping children cope with loss.

Should I talk to my dying loved one about my grief? Often, yes – if they’re able to have that conversation and willing to do so. Many people who are dying want to know that those they love are being honest with them. They often carry guilt about the pain they’re causing, and knowing you have support and that you’re going to be okay can bring them comfort. These conversations, though hard, are often described as among the most meaningful of people’s lives.

Can anticipatory grief lead to complicated grief after the death? It can, particularly if the anticipatory grief has been prolonged, unsupported, or accompanied by caregiver burnout. Seeking support during the dying process is one of the best ways to protect your wellbeing in the grief that follows.

About the Author

Lucy Cole is the founder of Love Life Coaching & Events and an award-winning Grief Coach (Prestige Awards 2024/25 — Central England) based in Sutton Coldfield, Birmingham.

Having personally experienced anticipatory grief while caring for her father in his final months before his death in March 2020, on top of the previous losses of her mother and stepfather, Lucy understands the particular anguish of losing someone before they are gone. She brings both lived experience and professional expertise to supporting people through anticipatory grief.

Qualifications: Grief Recovery Specialist | Master NLP & Hypnotherapy Practitioner | Personal Evolutionary Coach | Life, Health & Emotional Health Coaching | CBT Practitioner | Trauma-Informed Coach (in training)