Anticipatory Grief

Over the last few months, we’ve talked a lot about the loss and grief we’re experiencing during these COVID times.

But what about grieving something that hasn’t happened yet?

  • Like a pet diagnosed with cancer
  • Or a loved one diagnosed with dementia
  • Or knowing job cuts are coming because of COVID and it’s only a matter of time before you’re let go

There are so many diseases that slowly strip away the physical and mental health and independence of the people we cherish. And there are many more examples of times when we see the loss coming before it happens – like the end of a romantic relationship or career.

In these cases, the grieving process can begin months or even years before we experience the actual loss. It often starts the moment we realize the loss is inescapable.

This is called Anticipatory Grief.

Did you know it had a name?  Did you also know that it’s totally normal and many people experience it?

In situations of terminal illness or diseases that slowly debilitate there are many losses to navigate along the way.

  • Their loss of independence
  • The loss of who we were with them (often also taking on a new identity of caregiver)
  • The loss of their health (physical and mental)
  • The loss of our plans with them for the future

All of these little losses add up and remind us over and over again that their death is looming and we begin to grieve the relationship before it’s over.

The signs and symptoms of anticipatory grief often look similar to the grief we experience AFTER a loss. Things like sadness, anger, isolation, forgetfulness, heaviness, depression, loss of interest in our favourite things and exhaustion.

For some people, working through their anticipatory grief makes the grieving process after the loss easier. For others, that isn’t true. Grief is highly personal and we all experience it in our own unique way so there’s no one-size-fits-all formula for who will experience anticipatory grief or how it will impact their grieving process.

What I want you to know is that anticipatory grief is 100% normal. There’s nothing wrong with you and you’re not alone. This is a natural response to an impending loss.

Often anticipatory grief goes hand in hand with something else I want to talk about COMPASSION FATIGUE.

Compassion Fatigue is exactly what it sounds like, it’s the cost of caring and it’s also known as Caregiver Burnout. Compassion Fatigue was originally a term used to talk about the specific kind of burnout faced by healthcare workers. I cannot begin to imagine the impact that the current pandemic has had on our healthcare workers who have spent months stretched to their limit, working more, giving more, navigating uncertainty and many witnessing more deaths than they would normally see over their whole career. 

Compassion Fatigue is also common among spouses, children and other primary caregivers who are supporting loved ones through illness and into death. Whether it’s your chosen career or a role life has unexpectedly thrust upon you, when we spend all our time and energy caring for someone who is ill we can get to the point of burnout, exhaustion and the edge of apathy.

Compassion fatigue shows up differently than anticipatory grief. It can look like…

  • Feeling burdened by the suffering of others
  • Loss of pleasure in life
  • Difficulty concentrating/ mental fatigue
  • Insomnia
  • Physical exhaustion
  • Bottling up emotions
  • Nightmares
  • Feelings of powerlessness or hopelessness
  • Poor self-care
  • Denial

What can you do if you’re experiencing anticipatory grief or compassion fatigue?

Put your oxygen mask on first.

If you want to show up for your loved one whether you’re the primary caregiver or not (but especially if you are!) you need to start by taking care of yourself. Whether that’s something as simple as going for a walk or journaling or creative expression or taking a bath it’s important to make sure your physical/emotional/spiritual needs are being met. Lean on your support system. Know who to call when you need someone to listen and hold space, or walk the dog, or step in and stay with the person who’s ill so you can take a break.  It doesn’t need to be all the same person so keep a list handy.  You may also want to look into a death doula who can help support you and the person who is dying.  

Acknowledge your emotions.

Emotions are information, so get curious about them! Accept that you’re feeling them and then start labelling them. It’s important to find the right words. Are you feeling sad, anxious, angry, depressed, tired, disappointed, vulnerable, nervous or overwhelmed? 

Getting specific allows us to better regulate our emotions. We learn how to identify and pull out each emotion like a thread from a colourful tapestry.  And the faster you can identify it, the faster you can process it. This helps us in the future as well because, for example, we’ll be able to distinguish if what we’re feeling is frustration or confusion and then take the necessary steps to process it. 

When we name and acknowledge the presence of our emotions it’s important not to judge them as ‘good’ or ‘bad’. Next, connect with your breath to help deactivate the energy of that emotion. Exhale it out through the mouth. Rinse and repeat until you feel lighter. You also may want to find a safe space where you can bring ALL your feelings. A support group, a great friend, a therapist or a grief coach who you trust.

Don’t leave things unsaid.

One of the biggest regrets grievers report is not being able to say good-bye. You have the chance to say everything you need to say. Say thank you and I love you. Apologize.  Extend forgiveness if you need to. Recount fond memories together. This is your chance, cherish it.

Also, ask how they want to spend their remaining time. Talk about what they want for their funeral or celebration of life. Have ALL the hard conversations while you can. It’s going to be uncomfortable. It’s not the conversation you ever imagined having but finding the courage to talk through everything will make it easier to honour their wishes. And you’ll be able to love them through this transition without wondering what music to play or what to do with their ashes.

You don’t have to be the rock.

The myth of “being strong” or “staying positive” applies as much to anticipatory grief and compassion fatigue as it does to grief after a loss. Expect that everyone in your family may be coping with their own version of anticipatory grief too. That doesn’t mean that you have to be their emotional rock. Talk about your feelings, express them openly and it might just help them to feel more normal and give them permission to grieve too.

Relief without guilt.

When the time inevitably comes and your loved one dies after a prolonged illness many people experience relief. And almost simultaneously guilt. There is nothing to be ashamed of or feel guilty about. Relief doesn’t mean that you loved the person any less. It’s a normal reaction to the end of an overwhelming and stressful period of your life.

*A note about hope.

So often we hear the words, “Don’t give up hope.” Or some variation like “believe in miracles.” And there’s nothing wrong with that advice UNLESS it blocks us from acceptance.

When you put all your eggs into the “hope” basket it’s a f*ck ton of pressure. For you AND the person who’s dying.

When we spend all our time and energy hoping for a miracle, hoping the doctors are wrong, hoping that somehow we’ll have more time, we’re missing out on the time and energy we could be spending with our loved one. This kind of hope builds a wall of armour around our hearts and that resistance to what’s happening blocks our connection. It stops us from being fully present with our loved one and from witnessing the small miracles that are happening all around us in the moments we have left.

Acceptance is giving up hope for a different future. And it’s giving up hope that your relationship could have been any different. Acceptance is letting go of the scripts in our head of what life was going to look like, our dreams for the future, what “should” have happened in the past.

Acceptance is freedom.

It isn’t easy to arrive at acceptance. We have to allow ourselves to grieve, to feel it all, to have our hearts broken open so the walls that hope built can melt and we can meet our loved one right now, in this moment, exactly as they are. And really, is there any greater gift you can give than that kind of acceptance and presence?

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