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I am bringing up grief today. There is a kind of grief that may be new to you. Knowing about it will help you and others to better respond in certain instances. Plenty of people tell me that they do not know what to say or do in grief situations and so let us today examine anticipatory grief.
If you are asking yourself “What’s that?” “Why might I need to know about this?” then you will want to lean in on this one.
In my duties as a patient advocate I encounter a lot of serious situations. There are hard conversations, somber and solid education to deliver, and my clients sometimes must make tough decisions. Not all outcomes are good. Sometimes the work is to help others understand and manage life toward an outcome ending in death, that of a patient or their loved ones.
It is good work, I tell you. Having been in this type of work for over 11 years now can tell you that there is so much beauty found inside every journey. Today I am covering a special time, and one that provides opportunities. It is the phenomenon of anticipatory grief.
What is anticipatory grief?
Anticipatory grief is a state of deep, painful sorrow that occurs before an impending loss. It can affect people facing the impending death of a loved one or their own death.
Anticipatory grief, also known as preparatory grief, is more than just normal grieving that starts early. It is often regarded as a way to process and resolve issues related to a dying person or a life-changing event. It can provide a means to proactively address your feelings and the likely consequences of the loss, dealing with them now rather than after the fact.
Anticipatory grief can help people cope by planning and preparing for the loss. I experienced this kind of thing myself prior to my father’s passing. I didn’t know what it was except that I felt and did weird things.
As my father entered into serious decline and toward his end of life I felt a generalized sense of uneasiness. I found myself engaging in a weird mode of “retail therapy,” meaning shopping. I did like to go to thrift stores, always on the hunt for a bargain. This therapy made for a great distraction or pattern Interrupt after a stressful visit with my father.
What was weird during my shopping was that I felt compelled to peruse the clothing, especially dresses in black or navy. But why? My father had made it clear to us that he wanted no memorial service or gathering of any kind; I would need no traditional funeral attire. What was driving me do this? It seemed some sort of preparation, and rumination and processing. I would simply rifle through the racks and mull – or find welcome distraction. Looking back, I believe I was experiencing anticipatory grief.
Who experiences anticipatory grief, and when?
When someone is
- Receiving, or becoming aware of a loved one who has received a terminal diagnosis, such as stage 4 cancer
- Being diagnosed with a progressive disease like Alzheimer’s disease, cystic fibrosis, muscular dystrophy, or macular degeneration
- Learning that an unborn baby may have a congenital or developmental disorder
- Having to address end-of-life care, such as entry into hospice
- Having to undergo amputation or potentially disfiguring medical procedures like mastectomy or colostomy
- Life-changing situations like an impending divorce, a child leaving home for college, or having to move out of one’s house
- The deterioration and impending death of a pet
How is anticipatory grief different from grief after death?
Anticipatory grief is like “conventional” grief after death as they involve many of the same emotions.
But with conventional grief, the emotions you experience are the direct consequence of a loss. Anticipatory grief is sometimes described as a “rollercoaster” because the person can shift back and forth between feelings of distress for several days and feelings of normalcy for several days.
Anticipatory grief can begin as soon as someone becomes aware of a change, whether formally or something they just feel, an inkling. For example, when someone is told that a loved one may die soon anticipatory grief may be felt immediately. Or, they could experience a delay as they first process the information about the diagnosis.
Let’s not complicate it, let’s just look at it. In doing so let us begin to see and realize some opportunities.
Feeling grief while your loved one is still alive does not mean you are abandoning your loved one or giving up. Instead, anticipatory grief may give you a chance to gain meaning and closure you might not have had otherwise.
You may feel like you are somewhere between holding on and letting go. Some people find this very painful. They may feel they are betraying their loved one if they lean at all towards letting go.
You don’t have to choose. It is possible to live with both holding on and letting go at the same time.
What are some symptoms of anticipatory grief?
This kind of grief can come with lots of other emotions, including anxiety, guilt, fear, and irritability. You may lose sleep, have problems concentrating, making decisions, or remembering things. All these symptoms are normal.
- “Roller coaster” emotions: This includes intense sadness and tearfulness that comes out of nowhere or is easily triggered. Another term for a triggered event is a ‘grief burst.’
- Fear, irritability, and anger: There is fear of death, as well as fear of the changes that will follow a death. In addition to dealing with their own anger, a person may have to deal with the anger of the dying person.
- Loneliness and isolation, and anxiety: Person experiencing anticipatory grief often find others backing away from them during a serious health crisis. On the other hand, someone with anticipatory anxiety will often feel lethargic and unmotivated and will readily withdraw from social situations. Many report that they feel like they’re living in a state of heightened anxiety, manifesting trembling, edginess, a racing heart, and other symptoms.
- Guilt: Feelings of guilt can occur if the person who has begun to grieve wants a loved one to be free of pain, even if it means dying. Or, they may feel the opposite, and want a loved one to stay even if means suffering.
We begin now to shift into the solution (y’all know this is where I like to hang out!).There are positive aspects to anticipatory grief.
Benefits of anticipatory grief
Anticipatory grief may help persons sort out their feelings and prepare for moving forward. Many bereavement experts will say that anticipatory grief provides opportunities for someone to
- Confront their fears rather than avoid them
- Deal with any unfinished business, both practical and emotional
- Clarify any misunderstanding or express what should have been said earlier
- Say their goodbyes (Plenty of people express regret if they had not or could not; here is an opportunity).
- Make preparations for their life moving forward
Anticipatory grief may literally be “Good Grief!”
How is anticipatory grief managed ?
It can be hard to control emotions, especially if a person is all over the place or feels that they ought to be able to have a handle on everything. It’s new turf, for many.
A person experiencing anticipatory grief may be alone in their perspective. People who don’t have a loved one facing death might have no way of understanding how the grieving person feels. And even someone who has been through the death of a loved one will likely have experienced it differently.
We must find our own way, one that fits. Here are some ideas.
Talk to someone – Find a friend who doesn’t judge and will let you express your feelings. This person should be a good listener and should not try to tell you how you “should” feel.
If your friend tries to share unwanted advice, speak up. Let your friend know you want someone who will listen and not try to fix things.
Many times as we speak aloud and share our own thoughts will gel. Clarity, understanding and a bit of resolution is felt.
Include children – Children also experience anticipatory grief and need to be included in the grieving process.
Talking about death with children who have a seriously ill parent has been shown to be helpful. It can help decrease anxiety, depression, and behavioral problems. Children need to know they will be cared for after the death. They need to understand they won’t be abandoned.
It is just as important for kids to work through their grief. Like adults, children need a safe place to express themselves. One place where children respond is inside art therapy. Hospice groups and bereavement programs have developed some solid techniques to help the younger ones in our lives.
Journaling – Is there even a time when journaling is not beneficial? It works here too. Journaling can help people make sense of their thoughts as they write them down. For example, journaling can be used to “communicate” with, or about, the person who will soon pass. It can help to figure out what a new life will look like. There is a lot online to get someone started with journaling.
Practicing Forgiveness – Forgiveness can be healing. Learning to forgive yourself is just as important as forgiving others.
The time before death is very emotional. There may be anger and resentment among those involved. This anticipatory time can be used to resolve differences.
I love this phrase that I came across about resentment: “Resentment is a poison you prepare for another and drink yourself.” Think about that one. Deep.
Listening is an important first step toward forgiveness. Two people can sometimes say the same things, just in different ways. At other times, you may continue to disagree with what your loved one is saying even after talking it through. Sometimes the matter just hangs.
Allow me to share a key approach that I learned from a trusted friend. We were talking to work through a resentment I held, a beef I had with another person. After I had said my piece, he posed this question to me: “Would you rather be happy or would you rather be right?” Upon hearing that, I let go.
Letting go of resentment and pain from the past can be freeing. Give yourself (and perhaps another) the gift of forgiveness.
My Two Cents
Recognize but do not pursue stages of grief in any certain order. Remember also that grief does not fit into neat categories or stages. Even though “stages” for grief and anticipatory grief have been developed by experts I believe those stages are meant for recognition – or acknowledgement- of grief, not the order in which one must experience it.
We can give ourselves permission to feel however we feel, whether it is during the time leading up to a loved one’s death, and then days, weeks, months, or years after. Grief is not time-limited. There is no order in which you must grieve nor to complete it.
There is no one way to grieve. Just be sure that you do.
Nancy Ruffner is a patient advocate whose focuses include aging strategy, healthcare navigation, and solo aging. Nancy consults with clients in a triage fashion, offering one-hour consultations to find a path, gain a deeper understanding of “how stuff works” in eldercare, or to specifically problem-solve. Schedule your single consultation now, without obligation of commitment or continuing costs.