Understanding Anticipatory Grief
“Why Am I Already Grieving?”
Updated January 15, 2013
Anticipatory grief is a common grief reaction among people who are facing the eventual death of a loved one. Yet, while most people are familiar with the grief that occurs after a death (conventional grief), this kind of grief is not often discussed. Because of this, some people find it socially unacceptable to express the deep grief and pain they are experiencing and receive the support they need. What is anticipatory grief, what symptoms might you expect, and how can you best cope at this difficult time?
As a quick note, this article is directed more for someone who is grieving the impending loss of a loved one, but preparatory grief is also experienced by the person who is dying. Hopefully this article, as well as the link below on coping with anticipatory grief, will be helpful to both those who are dying, and those who are grieving a loved one’s death.
What is Anticipatory Grief?
Anticipatory grief is defined as grief that occurs before death (or another great loss) in contrast to grief after death (conventional grief). Rather than death alone, this type of grief includes many losses – such as the loss of a companion, changing roles in the family, fear of financial changes, and the loss of dreams of what could be. Grief doesn’t occur in isolation, and often the experience of grief can bring to light memories of other episodes of grief in the past.
Anticipatory grief can be similar to grief after death, but is also unique in many ways. Grief before death often involves more anger, more loss of emotional control, and atypical grief responses. This may be related to the difficult place – the in-between place people find themselves in when a loved one is dying. One woman told me that she felt so mixed up inside because she felt she kept failing in her attempt to find that tender balance between holding on to hope and letting go.
Not everyone experiences anticipatory grief. It is not good or bad to do so. Some people experience very little grief while a loved one is dying, and in fact find they don't allow themselves to grieve because it might be construed as giving up hope. Yet for some people, the grief before the actual loss is even more severe. 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.
Does Anticipatory Grief Help the Grieving Process Later On?
Grief before death isn’t a substitute for grief later on, and won’t necessarily shorten the grieving process. There is not a fixed amount of grief that a person experiences with the loss of a loved one. And even if your loved one’s health has been declining for a long time, nothing can really prepare you for the actual death.
Yet, while anticipatory grieving isn’t a substitute, or even a head-start for later grieving, grieving before death does give you opportunities for closure that people who lose loved ones suddenly never have.
Purpose of Anticipatory Grief
For those who are dying, anticipatory grief provides an opportunity for personal growth at the end of life, a way to find meaning and closure. For families, this period is also an opportunity to find closure. To reconcile differences. To and give and grant forgiveness. For both, it is a chance to say goodbye. The night my grandmother died I was lying in bed with her. She turned to me and said, "we’ll miss each other," and hugged me. It was her goodbye gift.
I receive emails often asking how I feel about a family member visiting a dying loved one. The comments I hear are, "I want to remember my loved one the way they were before cancer," or "I don’t think I can handle the grief of visiting." But anticipatory grief in this setting can be healing. One study found that anticipatory grief in women whose husbands were dying from cancer helped them find meaning in their situation prior to their husband’s deaths.
Though anticipatory grief doesn’t necessarily make the grieving process easier, in some cases it can make death seem more natural. It’s hard to let our loved ones go. Seeing them when they are weak, and failing and tired, makes it maybe just a tiny bit easier to say, "it’s okay for you to move on to the next place."
Symptoms
The emotions that accompany anticipatory grief are similar to those after a loss, but can be even more like a roller coaster at times. Some days may be really hard. Other days you may not experience grief at all. Listed are some of the typical emotions, but keep in mind that everyone grieves differently.
- Sadness and tearfulness.
- Fear – Including not just the fear of death, but fear about all of the changes that will be associated with losing your loved one.
- Irritability and anger - You may experience anger yourself, but it can also be difficultcoping with a dying loved one’s anger.
- Loneliness – A sense of intense loneliness is often experienced by the close family caregivers of someone dying from cancer. Unlike grief after a loss, the feeling that it’s not socially acceptable to express anticipatory grief can add to feelings of isolation.
- Desire to talk – Loneliness can result in a strong desire to talk to someone, anyone, who might understand how you feel and listen without judgment. If you don’t have a safe place to express your grief, these emotions can lead to social withdrawal or emotional numbness to protect the pain in your heart.
- Anxiety - When you are caring for a loved one who is dying, it’s like living in a state of heightened anxiety all of the time. Anxiety in turn can cause physical symptoms such as tremulousness and shaking.
- Guilt – For some people the time prior to a loved ones death can be a time of great guilt – especially if your loved one is suffering. At the same time that you long for your loved one to be free of pain (and hence, die), you fear the moment that death will actually happen. You may also be experiencing survivor guilt – a guilt that you will be able to continue on with your life while someone else will not.
- Intense concern for the person dying.
- Rehearsal of the death – You may find yourself visualizing what it will be like to have your loved one gone. Or if you are dying, visualizing how your loved ones will carry on after your death.
- Physical problems - Such as sleep difficulty and memory problems.
- Fears of loss, compassion and concern in children – One study found that fears about what was going to happen and how they would be cared for were very strong in children.
Treatment
Anticipatory grief is a normal process is the continuum of grief. But in some cases this grief can be so intense that it interferes with your ability to cope. It’s also common for people to develop depression when faced with all of the losses surrounding grief. Seek help with a mental health professional if you find yourself having difficulty coping.
Coping
It’s important to express your pain and let yourself grieve. Finding a friend or another loved one you can share your feelings openly with is extremely helpful, just as maintaining hope and preparing for death at the same time is difficult. It can be even harder as people may wonder why you are grieving – even become angry that you are grieving – before the actual death. Keep in mind that letting go doesn’t mean you have to stop loving your loved one – even after they die. During this stage some people begin to find a safe place in their heart to hold memories of their loved one that will never die. If you or a loved one are living with anticipatory grief, check out the following article for tips on what has helped others cope at this difficult time:
Coping with anticipatory grief is different than coping with the grief after someone dies (conventional grief.) There can be mixed feelings as you find yourself in that delicate place of maintaining hope while at the same time beginning to let go. Not only are these emotions deeply painful, but people are often less likely to receive support for their grief at this time, and sometimes grieving before death may even be misconstrued as giving up, to someone who hasn’t “been there.”
What is Anticipatory Grief?
Anticipatory grief is the deep sadness that is often felt during the last days of life. It can be experienced both by the loved ones of someone who is nearing death as well as the person who is dying. While grief before death does open opportunities to say goodbye that sudden death does not, grieving beforehand doesn’t replace – or even shorten – the period of grieving following death. The following link explains this kind of grief in more detail.
This article is written for those who have a loved one who is nearing death and are experiencing grief, but those who are dying also frequently experience this grief. It’s my hope that the suggestions for coping below will help both those who are dying and their loved ones.
Tips for Coping
The obituaries that speak of “courageous battles” may be beautiful, but they also make it difficult for those caring for a dying loved one or the person dying to fully express the grief they experience prior to death. Not everyone experiences this grief, though one study found that 40% of widows found the grief before death to be more stressful than grief after death. If you are experiencing grief, it does not mean that you are abandoning your loved one or giving up. Instead, working through your grief may give you an opportunity to gain meaning and closure you would otherwise not have.
1. Allow Yourself to Feel and Grieve
Allowing yourself to feel the pain in your heart helps you to be honest with yourself. Anticipatory grief is not just mourning the impending death of a loved one, but all of the other losses that accompany death. The loss of a companion. The loss of shared memories. The loss of dreams for the future. This is also a time when grief from the past may resurface to be "re-grieved." Denying the pain you feel can prolong grief later on.
Grief serves a purpose, whether it occurs before death or after death. Just as researchers have defined phases of grief, they have also identified 4 tasks of grief. These tasks begin with accepting imminent loss, working through the pain, and eventually letting go in a way that allows you to relocate your emotional connection to your loved one in a different place. This doesn’t mean giving up on your loved one or forgetting them. Rather, completing the tasks of grief allow you to hang on to the joy and love you once shared, without the intense sadness that makes remembering so painful.
Many people find it difficult to express their grief before death because they see it as being unsupportive of their dying loved one. Finding a trusted friend can be a wonderful first step in coping with this grief.
2. Don’t Go it Alone – Express Your Pain
It’s important not only to let yourself feel your pain, but to share your feelings with a close friend or family member. Nobody should have to face anticipatory grief alone. To keep your feelings to yourself can result in a feeling of deep loneliness and isolation.
If possible, find a friend who is slow to judge and will be comfortable as you express anger. Studies suggest that anticipatory grief is similar to the grief after someone dies, but there is often more anger and loss of control over emotions.
Try to find a friend who is able to listen, and doesn't try to "fix things." I remember once, not in an anticipatory grief situation, but during my own battle with cancer. A friend was advising me on things I could do (which only made me angry as inside I was saying "you’ve never walked this walk – you’ve never had cancer!") I could have reacted in anger, or worse, shut down. Instead I told her that I didn’t want her to try to fix things. I only needed her to listen. I knew the particular emotions I was experiencing didn’t have an easy fix. I just wanted someone to listen so that I didn’t have to walk that road so quite alone.
If you can’t find a supportive friend, or even if you can, online support groups, such as those offered by
CancerCare are available that provide support for caregivers of people living with terminal illnesses.
3. Spend Time together
I often hear people talk about how difficult it is to spend time with their loved one who is dying. They don’t want to remember their loved one the way they are now, but instead, how they were before they were dying. But spending time is important not only for the person dying, but for close loved ones as well.
Think of meaningful ways to spend time together. As my grandmother was dying we pulled out boxes and albums of old photos that we went through – laughing and crying. I pulled out her jewelry and asked her to tell me the stories behind each piece. We made video recordings as she shared what it was like living before TV with my young sons. To pamper her I found an inexpensive
paraffin bath, and would soak and massage her hands and feet, then lull her to sleep reading some of her favorite old novels to her.
Everyone is different when it comes to what may be meaningful and it’s not the activities that you choose that are important. It’s spending time, even if that time is in silence.
4. Remember the Children
Children also experience anticipatory grief, and while it’s just as important for children to work through grief, they are given less opportunity to express themselves, even in most hospice settings. Studies have shown that children who are not given the opportunity to grieve are more likely to struggle with anxiety and depression later on in life. Some of the tips below, such as art therapy, may be particularly helpful for children.
Children need to be included, and need a safe place to express themselves emotionally. If it is a parent who is dying, choosing someone other than a parent may be helpful, as children may try to be strong for their parent who is dying. In one study it was noted that parents with advanced cancer were not aware of how deeply distressed their children were. On a more positive note, however, the same study found that children with a parent with advanced cancer valued family members and the important things in life much more than those children who did not have a parent with cancer.
Open communication surrounding death has been shown to help decrease anxiety, depression, and behavioral problems in children who have a parent who is seriously ill. Children need the reassurance that they will be cared for after the death, and that they won’t be abandoned.
5. Consider Journaling
Many people find that keeping a journal is very healing. Keeping a
journal can be cathartic on one hand, as you express even things you wouldn’t feel comfortable sharing with a friend. On the other hand it can be a place to record special thoughts around the time of your loved one’s death – thoughts that you may later wish you had recorded. Some people prefer a private journal. Others may opt to share their thoughts on a site such as
caring bridge where they can share not only their thoughts and feelings, but updates and requests for help from loved ones.
Instead of, or in addition to, journaling, some people find writing letters to help with the sorrow of an impending death. For example, you could write a letter to your dying loved one saying everything you want to make sure you would say. If you are dying, writing letters to your children – perhaps letters they can open at a later date – provides a place to express those tender emotions and at the same time grant those who remain behind a tremendous gift.
6. Take Advantage of Holistic Methods of Coping
Adopting a
holistic approach may be helpful both for the patient dying and for her loved ones. Several of these therapies have been found to help with emotions such as anxiety, and a few small studies have found that adopting a holistic approach in caring for those who are grieving has helped to bring hope and healing to a painful experience. Some of these practices include:
7. Nurture Your Spirituality
Spirituality is important for both those who are dying, and for their caregivers. Spirituality may take the form of organized religion and prayer, meditation, communing with nature, or even listening to music that is meaningful to you. Studies have shown that people who are dying experience a better quality of life in the last days if they have an active spiritual life, and that spiritual life has benefits for more than the person dying. A
recent study found that caregivers of people with advanced cancer were less likely to experience depression if their dying loved one had an active spiritual life.
8. Maintain a Sense of Humor
There’s not a lot of room for comedy when someone is dying, and there is clearly a time for sorrow. But sometimes humor, in the right setting, can be healing. I remember feeling tremendous release at my sister-in-law’s sense of humor when my step-father passed away. My mother had forgotten his socks when she brought the rest of his burial outfit to the mortuary, and broke down in tears. My sister-in-law kindly offered the socks off her feet -- nice REI socks. My step-dad, a dear man who ironed even his T-shirts would probably not have chosen those socks, and this thought was cleansing as it turned my mother’s tears of sorrow into tears of laughter. My sister-in-law, having hit our funny-bones then started singing "my socks are going to heaven." Stopping at a grocery store on the way home I’m sure the clerk thought we’d just spent hours at the bar and not a funeral home.
Some cancer centers are now offering laughter therapy for people with advanced cancer. Yes, there are many times when laughter just won’t do it. But on occasion, even if you have to "fake it till you make it" – laughter may lighten up a heavy mood.
9. Practice Forgiveness
Forgiveness is healing, and learning to forgive yourself is just as important as forgiving others. The time before death is filled with emotions, and anger and resentment among family members can reign strong. But this is also a time to resolve differences. A good first step in forgiveness is listening. So often people are ultimately saying the same thing – just in different ways. Yet some times there are clear differences. A question you can ask yourself if you are irritated with another family member is, “is it more important to love or to be right?” Someone once said that resentment is a poison you prepare for another and drink yourself. To let go of resentment and hurts from the past is freeing. Give yourself the gift of forgiveness.
10. Give Your Loved One Permission to Die
It’s not uncommon for someone to hang on until some specific time – for example, waiting until they hit a date such as the graduation of a child, a birthday, or a visit from a loved one. For some people, it appears as if they finally allow themselves to take their last breath after a loved one says goodbye in some way, and in doing so, grants permission. Permission to die can go both ways. The night my grandmother died she said to me, "we’ll miss each other." Her words gave me permission to let her go, and in turn, my response indicating that I would be okay gave her permission to pass on to the next place. The gift of goodbye can be a beautiful gift.
