Anticipatory grief: grieving before a loss

This is the most common setting. You may grieve each time there is bad news, a new symptom, or a treatment that stops working. Grief and hope can both be there on the same day.

The Alzheimer’s Association says caregivers may start to grieve as soon as they hear the diagnosis. As the illness moves on, it is common to feel grief and loss again and again.

Others may not notice this grief, because most people think grief only starts when someone dies.

The NCI notes that people who are dying can feel anticipatory grief, not only their families. It can look a bit like depression, but it is not the same, and care teams have ways to tell them apart.

You may grieve your future, your plans, your role in the family and the people you will leave. These feelings deserve care and space.

Cleveland Clinic notes that anticipatory grief can also come before other kinds of loss, such as an illness or a forced job change.

• Acceptance: knowing the loss is coming
• Imagining the future: picturing life afterward
• Reflection: making sense of feelings like regret or guilt
• Rehearsal: thinking ahead to what you will need to do

These are not steps to finish in order. A psychologist quoted by Cleveland Clinic says people often “ping-pong” between them.

The Alzheimer’s Association says it is okay to feel love and anger at the same time. Caregivers often wish the illness were not real, resent how much care is needed, or feel guilty for enjoying life.

Some days you may feel nothing much, or busy yourself with tasks. That can be your mind pacing itself. Grief often comes in waves rather than a steady flow.

Imagining the future and rehearsing what you will need to do are normal parts of anticipatory grief, Cleveland Clinic says. They are ways your mind prepares, not wishes for the loss.

Many people find it helps to say this out loud to someone they trust: “I hate that I am already planning.” Saying it can ease the shame.

Trouble sleeping, losing your appetite and trouble concentrating are common signs of anticipatory grief.

Small things that help

• A glass of water and a snack you can eat with one hand
• A short walk outside, even five minutes
• Lying down for 20 minutes when someone else can sit with your loved one
• Slow breathing, with the out-breath longer than the in-breath

The NCI says grief felt before a death does not simply subtract from grief after it. You may still feel deep grief when the loss comes, and that is normal.

What preparing can do is help you feel less caught off guard, and give you a chance to say and do what matters.

The NCI warns against assuming anticipatory grief is present just because there is a serious diagnosis, or because time has passed. About 1 in 4 people with incurable cancer feel it.

The NCI notes that the person who is ill can feel anticipatory grief, and that care teams can assess it separately from depression. Both deserve care.

Several studies show that grief after an unexpected death differs from grief that starts before an expected one. Your experience does not need to match anyone else’s.

The NCI lists things linked to harder anticipatory grief, including having little support from others, a very dependent relationship, discomfort with closeness, and a spiritual crisis.

Coming to some acceptance of death is linked to less anxiety, less low mood and less anticipatory grief. Talking it through, including with a therapist, may help.

Hope often shifts over time: hope for a good day, for a visit from someone special, for pain to ease, for a peaceful moment together. Smaller hopes are still real hope.

Questions to ask yourself

• What am I hoping for today?
• What would make this week feel meaningful?
• What would my loved one hope for, if I asked?

• “I am heartbroken, and I am grateful for this time.”
• “I want more time, and I don’t want them to suffer.”
• “I am exhausted, and I would not want to be anywhere else.”

The “Different kinds of loss” guide has a “Holding both/and” worksheet that may help.

The NCI lists a spiritual crisis as one thing linked to harder grief. If your beliefs feel shaken, a chaplain, faith leader or spiritual care provider can listen, whatever you believe.

Hospital and hospice teams often include chaplains. The “Faith & mental health” guide has more.

Some people choose to say

• “I love you.”
• “I’m sorry for…”
• “I forgive you.”
• “Thank you for…”
• “I will remember…”

If speaking is hard, you can write a letter, record a voice message, or simply hold a hand. If your loved one can no longer reply, many families still talk to them and find comfort in it.

Watching a favourite show, playing music, sharing a smell they love, or sitting quietly together can matter as much as big talks.

Ideas

• Look through photos and let them tell the stories
• Play the songs they love
• Read aloud from a favourite book or prayer
• Bring a pet to visit, if allowed
• Rub lotion into their hands or feet

Researchers describe “rehearsal”, thinking ahead about what will need to be done, as part of anticipatory grief. Arranging hospice or talking about funeral wishes can be part of this.

Ideas

• Ask for favourite recipes, stories or advice
• Record their voice telling a story
• Make a hand print or keep a piece of handwriting
• Write down the sayings that are so “them”

Anticipatory grief can be extra confusing when the relationship was painful. You may grieve the person, and also the relationship you never had.

You don’t owe anyone a reconciliation. You can choose how much contact feels safe. The “Adult children of abusive parents” guide has a section on when an abusive parent ages or gets sick.

MedlinePlus warns that phrases like “going away” confuse children. Name the illness, and explain that it is not catching and not their fault.

For young children, describe what death means for the body, for example that the person will stop breathing and will not eat or talk any more.

Children need to hear the truth a little at a time, as the illness changes. Expect the same questions many times, and answer them again.

It is okay to say “I don’t know.” If you can, offer to find out.

Most experts say it is more upsetting for children to be sent away. They usually do better staying close, at home, with someone they trust.

Tell them who will look after them, and keep school and bedtime routines as steady as you can.

Hospital social workers and other professionals can help you plan these talks.

Teachers and school counsellors can watch for changes and give extra support if they know what is happening at home.

Talking with others, especially people who have been through something similar, is one of the coping steps Cleveland Clinic recommends.

The Alzheimer’s Association suggests support groups, including online ones, for people caring for someone with dementia.

Cleveland Clinic notes that pushed-down feelings can show up as overeating or substance use. Crying, writing, praying or talking can let them move.

Ideas

• A few lines in a journal before bed
• A good cry in the car or shower
• A walk where you let yourself think about them
• Telling one person the truth about how you are

The Alzheimer’s Association says the best thing you can do for the person you care for is to stay healthy yourself, and to keep up activities and friendships you enjoy.

Ways to get a break

• Ask a friend or relative to sit with your loved one for a few hours
• Ask the care team about respite care
• Take one hour a week that is just yours
• Let others bring meals or run errands

The Alzheimer’s Association suggests accepting what you cannot control and making the best decisions you can about what you can.

You will not get every moment right. No one does. Being there, as you are, is enough.

In a well-known study of dementia caregivers, 72% said the death was a relief to them, and more than 90% saw it as a relief for the person who died. Relief often comes after a long, hard stretch of caregiving.

Relief can sit alongside sadness: relief that their suffering is over, relief that the waiting is over. Both are part of love.

Replaying scenes and feeling regret or guilt are common parts of grief. Try speaking to yourself the way you would speak to a friend who did their best in an impossible time.

The “Self-compassion & your inner critic” guide has ideas for quieting a harsh inner voice.

If you spent months or years caring, you may lose your routine and your role along with the person. It can take time to rebuild your days.

The “Grief: understanding loss” guide covers the weeks and months after a death.

U.S. rules say Medicare-certified hospices must have a grief support program and make it available to the family for up to 1 year after the death.

Ask the hospice team what they offer. It may include calls, visits, groups or memorial events.

Things you might say

• “This must be so hard, watching her change.”
• “You don’t have to be strong with me.”
• “How are you doing, not just how is he doing?”
• “I’m thinking of you both.”

Avoid rushing to silver linings like “at least they had a long life.” Listening is usually more helpful.

• Bring a meal or groceries
• Drive to appointments
• Sit with the person who is ill so the carer can rest
• Walk the dog or pick up the kids
• Handle a phone tree or group updates

Faith communities, neighbours and clubs can share the load with a meal rota, visits, prayers or rides. Many people find comfort in rituals and shared care during this time.

Put a reminder in your calendar to check in a few weeks and months after the death, and on hard dates like birthdays. The “Supporting someone who is grieving” guide has more ideas.