Human beings are natural storytellers because our entire lives consist of stories.
From birth until death, and everything in-between, our lives (and the lives of those we love) are built on important stories.
When someone is dying –– an interruption in the story of their lives –– grief can emerge as a reaction, even prior to that person passing away.
In the process of saying goodbye to someone we love, we may experience an entire host of conflicting and unsettling emotions and responses, even as we try to enjoy the time we have left.
Here is my own story and experience:
Recently, my grandmother passed away from cancer, which had spread to her entire body. She was over 90 when she passed away, and had been diagnosed with terminal cancer almost two years before she passed away. My mother had been her caregiver (along with some incredible nurses aids) that entire time.
My grandmother lived down the block from me, so we would have conversations, and play cards on weekends. Bubby (grandmother) Honey was hysterical, and had lived a life filled with stories she told me, from living through the great depression, to losing her career as a nurse, to sending my grandfather a “Dear John” letter. Her entire life was filled with stories that she delighted in retelling.
But for those two years, I watched my mother oscillate between sadness, and guilt, and watched her grieve for her mother who could pass away any day. None of us knew when it would happen, the doctors had no idea, and as her family all we could do was watch and try to keep her comfortable. Toward the end, when she couldn’t speak, my family took turns sitting reading to her, because it was important she knew we were there.
My mother had it the hardest, barely sleeping the entirety of those two years, constantly worrying about her mother and worrying about a future world where her mother wasn’t there anymore. And she worried about how to speak to us about it, how to tell her grandchildren, and how to not feel guilty for spending a minute away from her mother’s ongoing pain. It was like she was grieving the entire time, even though my grandmother didn’t pass away until early this year.
She experienced anticipatory grief, and eventually, full blown grief.
What Matters Most, And How Anticipatory Grief Surfaces
The day-to-day details of someone's life story are important:
- How they treated others.
- How they loved.
- How they grew personally and helped others do the same.
Remembering these qualities is a really great way to deal with the incoming loss of the person we love, and can help mitigate some of the pain.
That may not stop our anticipatory anxiety from taking over, though. Whether you have a terminally ill family member or friend, an aging family member (but otherwise healthy), or someone is just late for dinner –– our minds predict the ending and often choose the worst possible scenario.
"It's like we're trying to dress-rehearse tragedy so we can beat vulnerability to the punch," says Brene Brown about those moments when we anticipate the worst-case scenario.
So, let's unpack what anticipatory grieving looks like, and talk through ways you can work through the anxiety and fear, and lean into the smaller moments, the moments of joy –– the moments that matter.
Can we have a real conversation about anticipatory grief?
Anticipatory grief is grief that is felt before the loss of someone you love, often due to a terminal illness or diagnosis, but a variety of circumstances can spark this response.
Anticipatory grief can be as intense as other forms of grief, and can include both mental and physical symptoms.
Anticipatory grief is perfectly normal, especially when tied to a close family member or friend who will soon pass away. This response is our body and brain’s way of recognizing and preparing for the inevitable.
Loss is hard, but watching it happen in real time can be excruciating,
Fear and anxiety are often even more significant parts of anticipatory grief than conventional grief. The fear of being alone, of what life will be like without them, or who you will be without them can lead to extreme anxiety that forms anticipatory grief.
According to VeryWellHealth: “A study of Swedish women who had lost a husband found that 40% of the women found the pre-loss stage more stressful than the post-loss stage,” proving that the anticipatory grief can often be the hardest part. It is our fear of the unknown that puts us in this place.
Here’s the truth: you are not crazy. Those fears are real and valid. It is normal for anticipatory grief to feel like a roller coaster ride of emotions.
Here’s how to recognize if you are experiencing this type of grief:
The Most Common Symptoms of Anticipatory Grief (And What You Can Do To Mitigate Them)
Like grief that occurs after a loved one’s death, anticipatory grief has both mental and physical symptoms, and can happen for many reasons.
Both dying patients and their friends and family can often experience anticipatory grief, and it can lead to serious distress.
Here is what to look out for, either in yourself or a friend or family member:
We don’t have control over every aspect of our own lives, and we certainly can't control the death of those we love. Illnesses take route. Tragedies occur. Things can change –– and they can change fast.
You may be experiencing sadness surrounding a whole variety of things: not being able to take your child to soccer, not being able to celebrate your wedding with your parents, or have them see your children grow up. You might be watching your best friend fade away, and feel completely helpless.
Those things are heartbreaking, and you are right to be sad about them. The sadness during anticipatory grief is often around a loss of an expectation –– that they would be here, that you would pass first, that it wouldn't happen this way.
Fear is the root of anticipatory grief. We don’t know what is on the other side of loss and grief, for ourselves or our loved ones, and every single loss is unique and different. We can’t pre-plan or even imagine what life will look like when that inevitable moment happens, when we are left there standing, without our person, and that’s terrifying.
Fear can be a healthy emotion. It may help guide us away from dangerous activities. And the loss of a close relationship with our community-driven brain is indeed a dangerous activity. This fear is legitimate. Similar to sadness, you must feel it, let it exist, and talk about it when you can (with friends, family, or with a therapist).
Anxiety about the future.
Anxiety about the future is fueled by fear. And it is entirely reasonable. Change in general sparks anxiety in most of us and especially profound change like the death of a loved one can be a tipping point.
Take deep breaths when the anxiety feels overwhelming. Remember to talk to those around you, and when you ultimately talk to yourself:
- Be kind to yourself .
- Give yourself the leeway to cycle through a variety of emotions about what is happening.
- Know that this anxiety won’t always be here –– and that its purpose now is showing you how deep the love and connection is with your person.
Our memories are what we use to carry our loved ones with us, even when they are alive. That will continue to be true when they are gone, and we can use legacy projects to build new memories of them even in their absence.
There are two types of experienced loneliness felt in anticipatory grief:
- Fear of future loneliness,
- Present loneliness in your feelings.
Both of these can be better addressed by talking to friends or family or attending grief support groups –– even if those groups are online.
You might feel like it’s not normal to feel alone when your loved one is still alive, but that’s not true.
Our social media culture already has many feeling incredibly lonely as people post only the happiest parts of their lives. But there are communities out there where grief is embraced as a healthy and natural part of human emotions (because it is!).
Many people turn to these communities so they can share and listen to people who are experiencing similar circumstances and experience compassion and empathy from people who understand their pain.
Depending on the situation, guilt may be an aspect of how you experience anticipatory grief. Especially if your loved one cannot talk, or is not aware of what is happening, you may feel there is something you need to say or apologize for, and can't.
Or maybe your guilt stems from the thought of relief from a family caregiver role –– guilt can be an incredibly heavy emotion in this case.
Guilt is not something you can logic away –– and it is not a healthy expression of grief. It will not go away with your loved ones' death and likely only intensify. It is so incredibly vital that you talk to friends or family. Ideally, it would be best to speak with a trained professional who can help you understand the guilt you are feeling and give you tools to work through it.
For example: Writing a letter to your loved apologizing or working on self-forgiveness techniques, speaking to your loved one (whether they can hear you or not)
Physical ailments accompany grief because our mental health has a significant impact on our body. As your pain (anticipatory or not) intensifies, you may experience issues like sleeplessness (or sleeping too much), headaches and migraines, muscle cramps, nausea, and more.
During this time, remember to eat nutritious foods and focus on sleep (8 hours or so a night). Be kind to your body. Listen to it. And continue to let the emotional aspects of grief come as they will, feel those emotions deeply.
Some people like to accompany therapy, for instance, with acupuncture to help with grief's physical responses. Massages, if you have the means, can be a great option as well.
Doing what you need to to deal with what you are going through is important, because you are important.
How to Help Yourself (And Your Loved Ones) Cope With Anticipatory Grief
All right -– so you know that you are experiencing anticipatory grief or that someone you love is. What can you do?
Well, there are a variety of options.
You can mix and match some of the ideas below and choose what remedy feels right for you. This is about your personal self-care during the impending death of someone you love.
“We have anticipatory grief all the time when we think about things to come and how we will feel, whether it is about the death of a loved one or another major life transition, says Amy McDonald, Owner, and CEO, Under a Tree Health and Wellness Consulting.My advice is to practice mindfulness, and every time we catch ourselves going out into the future with worry and speculation. Pause, take a deep breath and pull into the moment. Check-in with yourself and feel the moment, the sounds, smells, feelings, etc...whatever it takes to stop and be in that moment the loved one is still living.”
“It takes practice every day, every hour and, sometimes, every moment. It is the only way to not live out in the future worrying about when the person will pass and how we will feel and missing the precious moments we have left with them—simple words, challenging to remember, but has powerful results.”
Again, grief in all its forms is different for everybody. It’s important to know that your journey won’t look exactly like the journey of others, so be conscious about what is effective for you and depletes you even more.
Educate Yourself On The Possibilities.
Maybe you’ve heard about the Stages of Grief in schools or from a family member or just online somewhere, and you are expecting to experience those. Think again. Elisabeth Kübler-Ross originally outlined the 5 Stages of Grief in her book On Death & Dying, written earlier in her career.
Years later, on her deathbed, she made a significant revision to that original text: that the five stages of grief are not linear. They aren’t stages at all, except for those who are facing their own death.
The five stages –– denial, anger, bargaining, depression, and acceptance –– apply, according to Kuber-Ross, to those who are experiencing their own demise. For those in the grieving process of someone they love, however, grief is more cyclical, and the stages are not linear.
Instead, grief comes in intensities which will continue throughout your life.
Grief carves out a place in your heart and mind, and it stays with you –– even though joy will coexist with that grief, and you will capable of happiness even as the grief remains.
Some describe grief as a brick you carry in your pocket. At first, you know it is there, and it is incredibly heavy. But over time, you become less aware that it is there, until one day, you reach down in your pocket and feel that brick, and it all comes back. But you don’t want to get rid of that brick. No, because that brick is what you have left of the person you loved.
Speak with friends or family about how you are feeling.
In a study done in 2019 by Amerispeak and WebMD, it was found that the #1 thing those who are grieving said was helpful was spending more time with friends and family.
Yes, there are periods of isolation with grief of any type, even anticipatory grief, but by and large, those are grieving like to be surrounded by those they love.
It is even more helpful if the friends and family don’t skirt around the sadness and the loss. Instead, bring the person up and tell stories about them. Point out details of the day they would have loved.
Their presence is still so very much there because of the memories carried by those who loved them.
Make sure your children are equipped to handle the loss.
While many have varied reactions to illness and death, Children are not afraid of death so much as they are curious about it. Children tend to take cues on how to react from the adults around them (like when they fall and aren't hurt). Your response to grief will give your child (if you have children) cues about how to react themselves.
Answer their questions honestly about loss and grief and what will happen. If you don't know the answer to some of their questions, tell them that. Death is a mystery to us all, and grief is its sidekick. None of us know the answers to all the questions, and children will be OK with that.
Find a supportive community that understand your pain.
Friends and family might not always understand how you are feeling, so joining a support group can help. Grief groups are gatherings of people experiencing all types of grief, and folks can talk freely, without any fear of stigma, about exactly how they are feeling.
And better yet, many of these groups are run by professionals who can help provide therapy or point you in the right direction of fantastic resources to help with any particular issues. Maybe they know great acupuncturists for grief. Or a rad metal band where many of the grief group attendees go to bang their heads out among a crowd.
There are so many different ways of grieving. Grief itself will tear you open, letting in space for a newer identity. Many of these activities can lead you to new friends and communities.
A study on Anticipatory Grief published by the National Institutes For Health in 2018 found:
“Social support was a significant mediator of proactive coping and growth and was determined to be an outcome of the assertive nature of this disposition.”
And if you’re looking for a grief community to support you, Grief.com has created a directory where you can filter search to find the right group for you.
Seek out professional help.
With anticipatory grief in particular, looking to a professional to help you (and your family) deal with the pain, can be especially important.
Death doulas are trained to help folks pass away in the way they want to – and help family members manage the grief (including the anticipatory grief), the guilt, and the paperwork (because that’s necessary!).
Therapists are also incredible resources during this time, and can help to ensure that you’re coping with the loss and are able to move on. It’s important to seek out help when you need it, especially if you were a caregiver to your loved one.
Talk candidly with the person dying.
Time is running out –– yes –– but it is indeed still here. Use it to make your peace. Talk with them about what is bothering you. Learn more about what they want and how they are feeling.
Perhaps ask them, if they are interested, in writing you a letter that you can read in the future. This activity tends to be incredibly cathartic for them as well as for you after they die.
Or, just chat with them. Talk about your anticipatory grief. Ask if they’ve ever felt it (maybe this kind of anxiety runs in the family and they can offer help or advice!). Talk about what they are scared of, what you are scared of, and about the amazing relationship you’ve had.
Sad moments and joyous ones can live side by side, breathing the same air.
Spend time together and create new memories.
Even though you cannot do anything about the current situation, you can figure out things to do with your loved one –– especially if they are still lucid.
Maybe you play games of dice in the hospital or hospice. Or watch some of your favorite movies (or reality TV!) together. Perhaps you share stories about your favorite memories or ask about who they were before you knew them.
Options may be limited, but the experiences you bring to the table during this time aren’t just helpful for you, they are helpful for your loved one, too.
Maybe bring their favorite flowers in or really nice bed sheets. Even small details can make a real difference.
Time may be short, but actions can mean the world.
Try holistic methods of coping.
Just like regular grief, anticipatory grief can come with a lot of the same mental and physical symptoms, and holistic methods may help you to cope. Acupuncture, massage, and mindfulness have all been used to help people who are grieving, as well as patients going through palliative care, and can be helpful.
Other things that may be helpful as you try to mitigate stress and anxiety is exercise, which has been proven to help with anxiety and depression related to grief.
Whatever natural methods you want to take to try and cope through this time, make sure they are safe, and consult with a professional before trying anything.
Help your loved one feel happy and comfortable.
One of the best things you can do with your anticipatory grief is put it to action helping your loved one have a comfortable end-of-life. Helping them to be able to experience the best end-of-life experience, may help you cope during the process, and after as well.
Here are some ways to accomplish that:
- Help them finalize paperwork.
- Bring in flowers to brighten the room.
- Talk with them about their life.
- Help them leave letters for friends and family.
- Cook them dinners, and bring them treats.
- Think about journaling together.
- Help them take care of any unfinished business.
- Tell them “I love you” often.
- Remind them of their support system (and of yours!).
Focus on what they need and what might make things more comfortable for them. Work with the palliative care team, if necessary, to see what small joys and delights are possible for a higher quality of life, especially throughout their end-of-life care.
Together, you can work through what may be the hardest experience any of us will go through, but many of us will experience.
The Final Word
Anticipatory grief may seem distressing, and it is, but being able to say goodbye, have a final conversation, or even gain closure, can be the best thing for you, and for the person that you love.