Anticipatory grief: What it is and how to cope

It can creep up on you slowly or happen in a single moment, but anticipatory grief finds its way into the lives of most adult children or caregivers at some point. And the confusing part: Most people don’t know it when it hits them. Unlike grief after loss, which gets its fair share of air time, anticipatory grief is relatively unheard of, making it difficult for folks to recognize —  and process — when they’re experiencing it.

Anticipatory grief is common after a serious diagnosis or as we prepare to lose a loved one to illness or natural causes. “Anticipatory grief is a process that occurs prior to an expected loss,” explains Alicea Ardito, a licensed clinical social worker in private practice with Loudoun Adult Counseling and Northern Virginia Older Adult Counseling. “Often, anticipatory grief is associated with the loss of a loved one to death, but the definition has expanded to include many other types of losses as well.” For example, anticipatory grief is common after a serious diagnosis, like dementia, or as we prepare to lose a loved one to illness or natural causes.

Here’s how to tell if you’re going through anticipatory grief as well as expert advice on how to cope with these complex and difficult feelings.

What is anticipatory grief?

Anticipatory grief is grief that happens before a loss, rather than after. “It’s knowing that somebody is going to die and starting to acknowledge the changes that are happening in your life and in your relationships through that period,” says Elizabeth Schandelmeier, a licensed therapist, grief expert and the founder of Howling Lion Grief Support in Pennsylvania.

Jessica Lamar, a clinical psychologist, licensed mental health counselor and co-founder of The Bellevue Trauma Recovery Center in Washington, adds, “Anticipatory grief is most common when facing the potential death of a loved one, but it can also surface with other significant losses, like losing independence due to an illness or a major life change, an impending divorce or the loss of a body part, like a mastectomy or amputation.”

Most importantly, there’s no specific timeframe for experiencing anticipatory grief. If a loved one is diagnosed with a terminal illness, like cancer or a form of dementia, anticipatory grief could last for a long time, and it may come in waves or with varying degrees of severity. “It could be 10 minutes, it could be two weeks, it could be years,” Schandelmeier explains. “People can move through that grief space for a long time.”

Who experiences anticipatory grief?

“Anyone who is experiencing the possibility of a significant life change or event can experience anticipatory grief,” says Lamar. “However, it is most commonly experienced by those who are close to someone with a terminal illness or chronic condition, including senior adults and their caregivers.”

You also don’t have to be a friend or family member in order to be impacted by anticipatory grief. “It can affect professionals in caregiving roles, such as nurses and hospice workers, who may repeatedly face situations of impending loss with their patients,” adds Lamar.

Additionally, people who are coping with their own diagnosis or preparing for their own death will also experience feelings of grief. Schandelmeier says this is when terms like “preparatory grief” are more commonly applied, though the terms “preparatory” and “anticipatory” are sometimes used interchangeably by different care providers.

What triggers anticipatory grief?

While a concrete moment, such as a diagnosis or obvious cognitive or behavioral change, can set off feelings of anticipatory grief, there isn’t always one particular event that prompts it.

“Anticipatory grief can be triggered by many things,” explains Ardito. “It may be the realization that a loved one is nearing the end of their life, witnessing the process of a physical or cognitive decline or observing the progression of a life-limiting illness.”  

This moment or phase then can then take you to a place where you begin to imagine life without them, notes Iris Waichler, a licensed clinical social worker in Chicago and author of “Role Reversal: How to Take Care of Yourself and Your Aging Parents.” “It sometimes becomes an unconscious way to prepare for their death.”

What are some anticipatory grief symptoms?

“Anticipatory grief involves complicated and complex feelings similar to those feelings associated with grief after a loss,” says Ardito. It’s important to check in with yourself and your feelings as you move through caregiving or supporting someone through the end of life.

While each person will experience it differently, many will have some, or all, of the following feelings, according to the experts we spoke to:

• Depression.
• Anxiety.
• Anger.
• Difficulty sleeping.
• Changes in appetite.
• Sadness.
• Disbelief.
• Withdrawing from social activities or hobbies.
• Denial.
• Dread.
• Fear.
• Fatigue.
• Difficulty concentrating.
• Preoccupation with thoughts of the loss.
• Pulling away emotionally from the loved one, perhaps as a self-protective measure.
• Shock.
• Helplessness.
• Hopelessness.
• Numbness.
• Dissociation.
• Confusion. 
• Gratitude.
• Acceptance.

In addition to this list, Schandelmeier says one of the most commonly overlooked symptoms of anticipatory grief is guilt. “People are really, really hard on themselves and judge themselves very harshly,” she says. You might feel guilt for being stressed or overwhelmed in a caregiving role, for being distressed about how your relationship to your loved one is changing or because you think your grief is premature or invalid.

She continues, “The changes that happen as you watch somebody move through a diagnosis or their end of life process are permanent, so it’s almost like you’re watching a thousand little deaths. But it can be confusing to feel grief in these instances because you can still hold that person’s hand, you can still kiss their cheek — a lot of people feel guilty because they’re like, ‘They’re still here. I should not be feeling this way.’”

“While there may be empathy for the parent as they decline in health, there may be residual feelings, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings.”

— Alicea Ardito, licensed clinical social worker

For Carly Nguyen, a mom of two who runs the blog Little Voice, Big Matter, anticipatory grief presented in the form of wanting to make sure she provided closure for her father before he passed. “When I accepted that there was nothing else that could be done for my father, who was dying of cancer, I felt this great sense of urgency to let him know that we would all be OK,” she explains. “I wanted to be sure I eased any burdens he might be feeling and reassure him that he had done a fine job as a parent and a husband. I felt like I needed him to leave this world with that peace of mind.”

For adult children who have a contentious relationship with their parents, anticipatory grief can be even trickier. “It is not uncommon to feel conflicted about the relationship,” notes Ardito. “While there may be empathy and compassion for the parent as they decline in health, there may be residual feelings about the relationship, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings. A person does not have to choose just one way to feel.”

How to manage anticipatory grief

If you’re struggling with anticipatory grief, you are not alone. It is a normal part of the grieving process. Here’s how experts say you can acknowledge and start to process feelings of anticipatory grief, as well as how to support yourself while you’re working through it.

1. Educate yourself.

“Learning about the loved one’s condition and what to expect can help reduce anxiety and help family members prepare both practically and emotionally for what’s ahead,” Lamar says.

Particularly with a long term diagnosis, such as cancer, Alzheimer’s or Parkinson’s dementia, you may not know exactly what the prognosis will look like, and medical providers may not always provide the clearest outlook without prompting. Schandelmeier says to ask medical providers the following questions:

• What can we expect the course of treatment to look like?
• What are some of the ways our lives might change in the coming weeks or months?
• What are some things I should look to know that my loved one is doing well?
• What are some of the signs that things are not going well?
• What does the end of life look like for someone with this diagnosis?

2. Acknowledge your feelings and express your grief.

“Some people experience anger or irritability towards the person who is dying,” notes Waichler. “This may be because you are angry they are leaving you or because of the physical and emotional demands placed on you if you’re caregiving. It is important to recognize and identify the source of these feelings.” 

No matter what you’re feeling, give yourself space to express your sadness, anger or any other emotions that come up, says Lamar. You can talk about your feelings with a therapist, a trusted friend, a spouse or other loved ones. You might also try journaling.

Once you’ve had a chance to acknowledge your emotions, consider talking directly to the loved one who is sick or preparing for death, advises Schandelmeier. “You can tell your person that you’re so sad that they’re dying and that your relationship is changing, and that you still love them,” she says. “They know, but it’s a good thing to be able to talk about. This can actually be a time when people can connect at a very deep level about the experience that they’re having.”

According to Waichler, if the person who is dying does share a willingness to discuss their feelings about their impending death, these talks can create an intimacy and environment to help both parties begin to cope. “Many people feel regret for not saying all they wanted to a loved one that is dying,” she adds. 

The main take-away: Don’t self-isolate and be alone. As Waichler points out, “People tend to do this when depressed and it only makes healing more challenging.”

3. Seek support as early as possible.

Don’t wait until you are in crisis to seek support, the experts say. “Introduce any kind of help that you can earlier rather than later so it becomes a part of what you’re doing,” Schandelmeier says. “You want to set up a support system that will give you some buoyancy through the grieving process.”

Support might come in the form of a therapist, but Schandelmeier says you should also consider the following:

• Join a support group.
• Contact your area agency on aging for additional resources.
• Use resources like Care to find qualified care providers.
• Meet with doctor’s office or hospital social workers for additional guidance.
• Make a plan to care for yourself and the loved one with family and friends.

“Seek help from wherever you can get it, even if it’s [asking] a friend, ‘Hey, can you send me a funny text once a day? I need to laugh more,’” says Schandelmeier. “You matter, and you can’t help other people if you are completely depleted. Get people involved.”

4. Get inquisitive. 

When a realization occurs that there may not be much time left, inquire about your loved one’s life (even if you already know), suggests Ardito. “It can be helpful to ask questions about family history or express interest in hearing a parent retell favorite stories,” she recommends. 

5. Focus on the present.

To the extent that you are able to, try to be present with your loved one. “Make the most of the time you have together, create meaningful memories and share special moments,” says Lamar. This can take many forms, depending on the person’s needs and abilities.

Some activities to consider:

• Read a book together.
• Look at old photos.
• Share a special meal.
• Work on a craft or project.
• Ask about stories from their life.
• Go for a scenic drive.
• Listen to their favorite music.
• Watch a beloved movie.

“It can be very helpful to focus on the quality of time spent rather than the limited quantity of time left,” says Ardito. “Try to become fully present, even in difficult moments.”

6. Set boundaries.

“Anticipatory grief can jump-start long-delayed discussions about past unresolved conflicts due to the nature of the circumstances created by impending death,” notes Waichler — but this isn’t the case for everyone, and there’s no guarantee that conversations or interactions will end on a high note.  

“If your relationship with the person dying is conflictual or strained and you see no room for healing, identify another person who can step in to be the primary caregiver, if you’re serving in that role,” Waichler says. “You may need to set limits on the frequency and nature of your contacts if you see them ending in conflict. Identify tasks that can be helpful to the person, but that won’t raise conflict. Examples may be helping with meals, helping with laundry or chores or helping to coordinate a caregiving team.”

“Seek help from wherever you can get it, even if it’s telling a friend, ‘Hey, can you send me a funny text once a day? I need to laugh more.’ You matter, and you can’t help other people if you are completely depleted.”

— Elizabeth Schandelmeier, licensed therapist

7. Take care of your physical and emotional well-being.

“Taking care of your physical health will help you cope emotionally as well,” Lamar says. So, even though it can be difficult, try your best to meet your basic needs. This includes:

• Eating a balanced diet.
• Getting adequate sleep.
• Keeping up with check-ups and wellness appointments.
• Practicing good personal hygiene.
• Getting some physical movement in when you can.

“Additionally, try mindfulness activities, such as yoga, meditating or praying to gain inner strength and calm,” notes Waichler. “The stronger you are physically and emotionally, the more you can engage with a loved one in meaningful ways.”

It’s also a good idea to let your primary care physician know what’s going on, the experts note. They may be able to offer resources or provide practical advice on making sure your basic needs are met.

8. Differentiate between self-care and self-improvement.

Self-care is not about starting a new routine or trying to stick to some rigid care schedule, stresses Schandelmeier.

That said, instead of setting lofty care goals to cope with your stress and grief, look for small ways to nourish yourself that fit into your existing life and schedule, she suggests.

“For example, at every red light, take three deep breaths,” she advises. “Spend an extra 30 seconds in the shower just feeling how the water feels on your body. Sing and dance to your favorite song. I think of it as a pile of feathers. A thousand pounds of feathers is the same as a thousand pounds of rocks, so even though a feather seems really light, at some point, those feathers all add up.”

The bottom line on coping with anticipatory grief

Anticipatory grief is normal, but it’s not something many people are aware of until they experience it. Going through a major life change or supporting a loved one through advanced age or sickness and as they prepare for the end of life can all trigger feelings of anticipatory grief. 

It’s common for people in these situations to feel intense sadness and even guilt, but it’s possible to move through those feelings when you acknowledge them, create a loving support network around yourself and look for small ways to nourish yourself even in the most difficult times.

“Remember, anticipatory grief is a natural and valid form of grief,” concludes Lamar. “There’s no right or wrong way to navigate it. Be kind to yourself and each other, and don’t hesitate to seek professional support if you need it.”

Additional reporting by Nicole Fabian-Weber