As modern medicine improves, extending life expectancy and prolonging battles with cancer and other illnesses, we’re also seeing an increase in what experts call anticipatory grief.
Your loved one has received a diagnosis. Hospice has been called in, and now the final stages of life are fast approaching. You and your loved one may have been dealing with an illness for weeks, months, or even years.
This chapter is nearing its end. Final decisions need to be discussed and implemented. Your role as caretaker feels more urgent and serious, even a yawning sense of loss grows within you.
What is Anticipatory Grief?
Anticipatory grief is when you experience deep sorrow over losing your loved one before they have died.
Things have progressed since the initial diagnosis. Heartache over your impending loss is already setting in. You’re effectively grieving your loss before it happens.
This is called anticipatory grief. You know the death is coming and you are grieving for what what has been and what will never be. At the same time, you are conflicted because you want to put the best face on for your loved one’s sake, and you want to enjoy the remaining time you have together.
Family members are not the only ones to suffer from anticipatory grief; caregivers (hospice nurses, assisted living employees, doctors, and more) can go through this grieving period as well.
Can you grieve for someone who is still alive?
Yes. Grief over someone who is still living is more common than you may realize.
I have had adult children of Alzheimer’s patients tell me how they have been grieving for years. The parent they knew is no longer there, just a shell. Visiting someone you love that is suffering from this devastating ailment will wear you down. The patient doesn’t recognize anyone and may not have spoken for quite some time. The heartbreak and grief are real.
A terminal diagnosis of cancer is earth-shattering. Watching your loved one suffer through the treatments and the side effects of said treatments are devastating. You grieve for what they are going through the loss of health, the pain they are feeling, and the life they are losing.
What is the difference between grief and anticipatory grief?
Thee difference between “normal” grief and anticipatory grief are a matter of timing and complexity.
For timing, anticipatory grief happens before the loss occurs while typical grief is after the loss.
As for complexity, anticipatory grief adds the layer of grief over your loved one’s suffering during their decline and impending death.
In contrast, normal grief (or just grief) is the array of emotions you go through after a death has already taken place. This is grief that you work through without any additional problems holding you back in the grieving process.
What makes anticipatory grief so difficult?
Your grieving process started when your loved one received a diagnosis from the doctor. Depending on the situation, this period between onset and death can be very, very long.
Watching your loved one decline can bring on feelings of loss. This sense of loss isn’t just for the present but for the future plans you shared. You hoped to see children married and grandchildren born, you looked forward to enjoying your retirement and traveling together. These are just a few of the things you will grieve over.
Anticipatory grief can be just as deep and wrenching as normal grief. In essence, you are grieving in two different ways for the same person. Not only are you grieving the anticipated loss, but you are also grieving over their current suffering and loss of potential.
Anticipatory grief may be hard to discuss with anyone. You may have guilt over your feelings, especially if you have a sense of relief at the thought of your loved one’s passing. This is normal; it is ok to have a part of you want their pain to be over and your trial to end. These thoughts do not mean that you wish ill upon your loved one.
Still, the difficulty of talking about it can make you feel even more alone in your grief.
What are the symptoms of anticipatory grief?
Here is a list of symptoms that might affect you once anticipatory grief sets in. Remember that grief is different for everyone; you may feel many or few of these, or even others that are not listed.
- Anger, denial, depression, hopelessness, and forgetfulness are all feelings for normal grief. Don’t be surprised when these same emotions come in waves during anticipatory grief.
- If you are a caregiver, throw exhaustion on top of your grief. Taking care of a loved one and watching their health decline is both physically and emotionally exhausting. Don’t forget to take care of yourself too.
- If your loved one is in a hospice facility or hospital, you may become excessively alert and anxiety-filled. Every time the phone rings, you could have heart palpitations, or you might become weak in the knees. You are bracing for the bad news. You may not understand how you should feel; relief because they are still living or sadness because they are still suffering?
- Guilt is also common. You think that if only you could have done more, things wouldn’t be the way they are. Bouncing from a hope that they will get better to a sense of letting go because this is a terminal disease can bring on guilt. Looking forward for their suffering and your weariness to be over can cause you to feel shame.
There is no timeline for grieving a loss before it happens. Most people think grief only happens after a death has occurred, but that is not the case – anticipatory grief is real.
Anticipatory grief is not akin to giving up. It is part of the healthy emotional process of accepting the inevitable outcome. Your grief, even now, is real. And it hurts, causing emotions that you may have never felt before.
Is there anticipatory grief counseling?
Thankfully, there is counseling for anticipatory grief. Talking about your grief and the problems that go along with it are not just for other people. It is for you too. A counselor is a safe person to talk to about these complicated and unexpected emotions and feelings.
It may help you to talk with your loved one over any unresolved issues. Asking forgiveness and granting forgiveness where needed can go a long way in helping you to resolve grief.
Find a support group. Speaking with other people that are suffering or have suffered anticipatory grief will help you along the way to recovery. Talk to someone that is going through the same type of situation. It will be freeing for you to speak about it out loud. Sharing the despair or helplessness you are going through can alleviate some of the hardship.
So, if you’ve already grieved your loved one ahead of time, what do you experience when your loved one actually dies?
Bear in mind that there is nothing set in stone when it comes to a timeline for grieving. It is a personal experience.
After doing some research, I have gathered information that might help you to better understand your bereavement.
- You may feel relief. Relief that your loved one’s pain and suffering has ended. There is no more watching them deteriorate. This is a logical feeling. It hurts emotionally to see your spouse, parents, or child suffer. It comes to a point when you don’t want the suffering to continue even though it means losing them.
- Your grief may be just as long as with typical grief. Grieving before death doesn’t mean you will grieve for a more abrupt period of time. You may still go through all of the stages of grief at the time of death. Don’t be discouraged if the grieving process seems to start over at the time of loss.
- Your grief may be shorter than normal grief. Sometimes, grieving before death might mean that you won’t grieve so deeply at the time of death. You’ve been working through your grief from the time you found out the dreadful news and diagnosis and you’ve journeyed down the path a long ways.
- Your loved one’s death will still be difficult. Even though you have been watching your loved one deteriorating daily, you will never be 100% prepared for the moment they pass.
- New stresses can overtake old ones. Reality has now set in; your loved one is gone. You could find yourself worrying about bills being paid and the loss of your spouse’s income. New concerns will surface, and you will have to face them.
10 Things to Know About Anticipatory Grief
No one ever expects to have to watch their loved one’s health fail. It’s going to be an uphill battle from here until the end. You are going to think about and experience things you have never even imagined before.
Glance over the list of things to know about anticipatory grief. Some of these may help you cope. Maybe you will see some things you’ve already experienced, and I hope you will know you are not alone.
1. Anticipatory grief has stages, just like normal grief.
You will experience shock at your loved one’s upcoming demise. You will go into denial that this could be happening. Finally, there will be an acceptance of the inevitable outcome.
2. When you experience anticipatory grief, you will struggle with many emotions.
These might include:
- The need to talk to friends, family, or a counselor
- Anxiety and angst
- The need to be alone
Plus you will feel a different range of emotions after your loved one passes away. This secondary grief could be more or less, longer or shorter than your anticipatory grief.
3. Plan some special times with your loved one.
Carve out alone time to make some new memories with your loved one. How about reading aloud, playing cards, binging on some TV, or some conversation?
This time doesn’t always have to be sad or serious. Enjoy some happy times making some precious memories to last your lifetime.
4. You are not the only one with anticipatory grief; your loved one is also experiencing it.
Please keep in mind that you are not the only one who is suffering from grief. Your loved one is experiencing anticipatory grief too.
They know their life is coming to an end. They have plans that will never come to fruition. The fear and confusion they are experiencing may come out in bursts of anger or fits of tears.
Be patient and loving even during these hard times, and it will strengthen the bond between you.
5. Your anxiety level will be heightened.
You have likely never suffered anxiety like this before. The anxiousness of wondering if today is the day. Will this be the last time I get to say “I love you”? The next time the phone rings could be the hospice facility telling you your loved one has died.
You don’t know when the end will come. It seems like you are on a heightened alert at all times.
6. Your health matters too.
Make sure to take care of yourself. Due to all of the extra stress, you may experience some physical issues: heart palpitations, upset stomach, insomnia, and so many more. It would be a good idea to have your own health checked at this time.
Related: Grief & Self Care: 44 Tips for Healing, Comfort, and Peace
7. If you are the caregiver…
If you are the long term caregiver, it can feel like the cycle of grief is never-ending. Watching a parent, spouse, or child in the process of dying is gut-wrenching. When you are the caregiver, you are almost never off the clock. You may be feeling a deep sorrow over the loss, but hope has a way of hanging on.
That spark of hope: maybe a new medicine will be invented, maybe that new surgery will be the cure, or you noticed your loved one smiled for the first time in ages.
The littlest of things can encourage that ember of hope to ignite. You might have a spark of hope and a feeling of profound sorrow at the same time. Learn to accept these dual realities.
8. Anticipatory grief can result in loneliness.
Anticipatory grief is every bit as painful and arduous as going through grief after a death. It may be hard to talk about it to friends and family. While we will all suffer a form of common grief, anticipatory grief is something that not everyone will experience. Let’s be realistic; some deaths are sudden and unexpected, with no anticipation involved.
Loneliness can result from not being able to relate to anyone about what you are going through. It is normal to feel loneliness even though your loved one is still living.
It can help if you keep yourself connected to the outside world. Finding a counselor that specializes in anticipatory grief will ease your mind. You are not alone.
9. Your days will be spent differently than before.
You are coping with your loved one’s illness and will probably attend many more doctor’s appointments than ever before. You might start reading and researching everything you possibly can to help you and your loved one understand what is happening.
It can feel like you never get a moment to yourself. You are always giving yourself to your sick loved one. You might develop feelings of resentment and guilt. These are common feelings. Seek help if you are unable to come to terms with these perceptions.
10. Putting your anticipatory grief into action.
One thing that you can expect to do is helping your loved one finalize everything.
Hopefully, end plans have been put into place. If you don’t have funeral plans ready, now would be the time to get those arrangements together.
This could be a difficult discussion, and you may have been putting it off. With your loved one, review their final wishes. Call the funeral home to organize plans ahead of time. This will make things a little smoother when the passing happens. A funeral director is a genuinely helpful resource. He or she can help carry the burden and lighten the load for you. They can advise you on what to expect once the death has occurred. (Here are some tips on choosing a good funeral home.)
There are important questions to be asking yourself and your loved one at this point:
- Are the funeral plans in order?
- Have you paid for the funeral and cemetery property?
- Is there a life insurance policy? (Find out who is the beneficiary/beneficiaries as they will have to sign the claim form.)
- Is there a will?
- Where will you find all of the important paperwork?
- What checking accounts, credit cards, or anything else of this order do we need to close out?
- Do you want to write letters and say goodbye to friends and family?
- What sort of legacy do you want to leave? (Here are some projects that help identify this)
- Journaling can be quite beneficial for either or both of you.
These are just a few things you can do to help your loved one (and you) deal with the end of life process. Here are 30 more questions to consider about death, dying, and leaving a legacy.
Other Types of Grief
Unfortunately, there is more than one type of grief. As of today, the experts tell us there are at least 16 separate and distinct types of grief. We will all fall into at least one of these categories during our lifetime.
Learn more about the other types of grief here.
Some grieving is harder to work through than others. There might be certain times when you will need to seek the help of a professional. Check Google for a list of your local grief counselors, pastors, or therapists. Remember to take time out for yourself.
Read Next: Normal Grief