Monday, January 20, 2014

Anticipatory Grief


I knew it had to have a name.

A clinical name.  There had to be a name for 
what we as caregivers go through when our spouses
are diagnosed with a terminal illness.

Today I found the name and clinical definition.

I am not crazy!  

It is a real thing!

It is called Anticipatory Grief.

It is outlined as follows for caregivers of
terminal cancer peeps. 
(or other life threatening diseases).

I have copied and pasted two GREAT articles
for your reading pleasure.

I use the term "reading pleasure" loosely of course.

This ain't no "Lord of the Rings" or "Twilight" series.

As a caregiver, I was told by both doctors and
social workers alike that we "get to" grieve 
twice (lucky us!) with a terminal diagnosis.

But they never used the words: Anticipatory Grief.

And it makes so much sense.

We are anticipating what will be.

This is pretty much my FAVORITE line from
both articles-so if you get NOTHING else from
what you read, get this:

It is important to not mistake anticipatory grief as a lack of faith or a negative attitude. Instead, it should be viewed as a natural human reaction. Anticipatory grief allows individuals time to absorb the reality of loss and address unfinished business such as saying “I love you,” or “I forgive you.”

I'm pretty certain anyone who has EVER gone 
through this would agree that this is what
us caregivers feel.  

It's kind of some heavy (and long reading) but
a great insight to how terminal patients and
caregivers feel in real life.

And it's written by the "experts" not me.

There is just some GREAT practical advice and
common sense in these articles.


Anticipatory Grief: Mourning for Your Loved One with a Terminal Diagnosis

The cancer journey can be an emotional rollercoaster for everyone involved. Patients and caregivers are forced to deal with a variety of emotions beginning with the diagnosis, continuing through treatment and finally to remission or death. If death is in the foreseeable future, loved ones can experience anticipatory grief.

What is anticipatory grief?

Anticipatory Grief Cancer CaregiversAnticipatory grief is a form of mourning that occurs in anticipation of death. Anticipatory grief is often experienced once patients or their loved ones acknowledge the terminal nature of an illness. This form of grief is most frequently experienced by a caregiver but can also affect the dying individual.
It is important to not mistake anticipatory grief as a lack of faith or a negative attitude. Instead, it should be viewed as a natural human reaction. Anticipatory grief allows individuals time to absorb the reality of loss and address unfinished business such as saying “I love you,” or “I forgive you.”
Anticipatory grief affects the emotional, physical and spiritual being, but does not decrease the amount of grief felt after a death. It is important to remember that all individuals and families experience illness, grief and death in their own unique way.

Symptoms of Anticipatory Grief

According to The National Cancer Institute, the following aspects of anticipatory grief have been identified amongst survivors:
  • Depression
  • Heightened concern for the dying person
  • Rehearsal of the death
  • Attempts to adjust to the consequences of the death

When a Loved One is Terminally Ill

Talking About Death and Making End-of-Life Decisions

When your loved one has a terminal illness

Key Points

  • When a loved one develops a serious illness, it’s normal to go through an emotional experience akin to grieving.
  • If the illness is life-threatening, it’s important to talk about death and plan for the end of life.
  • These conversations can be difficult, but there are ways to make them easier.
Time seems to freeze when you learn that someone you love has a life-threatening illness. Maybe you instinctively pushed the news away. Or perhaps you cried, or swung into action. No matter what happened that day, time and life go on after the diagnosis is made—regardless of whether you feel ready to cope.
You and your loved one may have pursued promising treatments and perhaps enjoyed a respite from encroaching illness. At some point, however, the illness may become terminal, and gradually the end draws closer. Once further treatments are unlikely to be successful, there is a great deal you can do to muster support for both of you.
Some of the support you need is emotional. The fears and feelings that surface now are better aired than ignored. Some of the support you need concerns practical details. End-of-life care needs to be arranged and funeral plans need to be considered. Legal and financial matters must be addressed now or in the days after the death. This article can help guide you through some of these steps and suggest additional sources of support for you to draw on.

Dealing with anticipatory grief

Often, people feel anticipatory grief when they know someone they care about is seriously ill. Anticipatory grief means grappling with and grieving a loss before it completely unfolds.
When someone has a serious illness, there are many losses to grieve long before the person becomes terminally ill—for the person who is dying as well as for family and friends. Blows to independence and security, impaired abilities, and truncated visions of the future are just a few examples of devastating losses.
Just as with grief after a death, family and friends may feel a multitude of different emotions as they adjust to the new landscape of their lives. Typical emotions at this time include:
  • sorrow
  • anxiety
  • anger
  • acceptance
  • depression
  • denial
Depending on the type of illness and the relationship you share, you may feel closer and determined to make the time you have left count. Perhaps you are terribly anxious about what’s to come or so firmly focused on last-resort treatments that you continue to push away any thoughts of the end. Possibly you long for release or feel guilty and conflicted.
Although not everyone experiences anticipatory grief, all of these feelings are normal for those who do. You may find the following steps comforting:
  • Talk with sympathetic friends or family members, especially those who have weathered similar situations.
  • Join a support group online or in person.
  • Read books or listen to tapes designed for caregivers.

Making Time to Say Goodbye

Although painful in so many ways, a terminal illness offers you time to say “I love you,” to share your appreciation, and to make amends when necessary. When death occurs unexpectedly, people often regret not having had a chance to do these things.
Ira Byock, author of Dying Well and a longtime hospice advocate, suggests that dying people and their families exchange these words with each other:
  • I love you
  • I forgive you
  • Forgive me
  • Thank you
  • Goodbye.
Sometimes, dying people hold on to life because they sense that others aren’t ready to let them go. Tell your loved one it’s all right to let go when he or she is ready to do so. The assurance that you will be able to carry on—perhaps to help children grow or to fulfill another shared dream—may offer enormous relief.

Approaching this difficult conversation

Clearly, not everyone who is terminally ill is ready to talk about death. So how will you know when to talk and what to say? Below are some words that may help you. Your task in this difficult time is merely to open the door to this conversation and promise to stay for it if the person you care for wishes to talk.
Look for openings. A sermon or song you heard, a book you read, or the way someone else’s illness and death unfolded can be an opportunity for remarks that open the door. By commenting, you signal that you’re ready to talk and needn’t be protected.
Broach the topic gently. Elisabeth Kübler-Ross, psychiatrist and author of the book On Death and Dying, describes conversations that start with the simplest question: “How sick are you?”
While you may be too close to reasonably make that inquiry, there are other questions you can ask:
  • What do you worry about?
  • How can I help?
  • Is there anything you want to talk about?
Try not to rebuff tentatively expressed fears with hearty assurances, such as:
  • That’s a long way off.
  • Of course you’re not a burden.
It might help instead to ask specific questions. Depending on your loved one’s comfort level and receptiveness to the topics, questions you could ask include:
  • What are you thinking about?
  • What would be a good death?
Sharing your own thoughts on the nature of a good death may help.
Seek spiritual counsel. Talk with your religious leader or counselor. Priests, rabbis, and other religious leaders can offer real comfort to believers. Even people who do not regularly attend religious services may turn toward their faith as an illness progresses.
Ask advice about hospice. Hospice workers and hospital social workers can also help you and the person who is ill grapple with the issues surrounding death. Even if you have chosen not to use a full range of hospice services, some resources are often available.
Ask a doctor to help. A doctor’s reassurance about how physical symptoms might unfold and how pain will be handled can be invaluable. Some doctors can ask gently about fears, as well. Realize, though, that it’s not unusual for doctors (and nurses) to shy away from talking about death. Some feel determined to try everything and view death as a failure. Being human, they have their own fears and discomfort to deal with, too.
Let it go. Kübler-Ross noted that people slip into and out of denial during the course of illness and even during a single conversation. Sometimes it’s too hard to think or talk about death. Let your loved one end conversations that feel too difficult. Allow him or her to hold on to comforting thoughts and fantasies.


  1. I've been following your blog (and instagram) since the first time you wrote on the website. And love both.
    Anticipatory Grief. I remember it all too well. Always there, often exhausting, sometimes debilitating. I think it's one of those things that a person can only understand if they've been through it. You can try to explain it, but it's hard to understand the way it feels to grieve for a person who isn't gone. And then have a few good days and feel okay. Then have just 1 bad day... one reminder of what's coming, and start that grieving process all over again. It really is exhausting. I'm sorry that you and your family have to go through what you are. I remember how awful it was when Dad was sick, and wouldn't wish those negative moments on anyone. The good moments though - they really were great. Somehow cancer makes you remember what's important. And teaches you to make those important things even MORE important. It's heartbreaking to hear that the last scan wasn't anything but perfect. I'm thinking of you all, and as hard as anticipatory grief is, my prayer for you and your family is that you have to deal with it for many, MANY more years.

    Jen Sadler

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