— Understanding Anticipatory Grief

By Litsa Williams

I spent a lot of time with my grandmother when I was growing up. When I was young, before I started school, my grandmother watched me while my parents worked. I have many fond memories of walking the alleys by her house to the playground, helping her stuff grape leaves and roll cookies, playing the piano, painting our nails together, watching All My Children, and eating her delicious lentil soup.

But let me back up a bit. Long long before that, when my mother was just a twinkle in her father’s eye, my grandparents emigrated to the United States from Greece. They did what most good Greeks did: they opened a restaurant and they had children. But life did what life does sometimes – it took my grandfather way too soon, leaving my grandmother a widow with two elementary-school aged children. My grandmother ran the restaurant on her own, raising her two children in an apartment upstairs. A vision of the American Dream, she sent her children off to college, one to the Ivy League, and one at the top of her class through college and pharmacy school. In her retirement my grandmother moved to Baltimore. She stayed busy as a church volunteer and as a babysitter to her grandchildren. In her eighties she was still spending twelve hour days at the Greek Festival making loukoumades and selling pastries.

In her late eighties my grandmother had a stroke. The years that followed brought dementia that slowly took away the fiercely independent woman we knew. She was a version of my grandmother, a woman who was still kind, who still prayed, and who still loved having her nails painted. But this version of my grandmother spoke less and less, came in and out of awareness, had to be reminded who we were, and could no longer care for herself.

When my grandmother died just shy of her 95^th birthday in 2004 I am not sure I had ever heard the words ‘anticipatory grief’. And yet I remember so well thinking that we had been saying goodbye over the past six years, as she had slowly slipped away. Though she had still been with us in body, we had been slowly mourning the loss of her personality, her independence, her memory, and her awareness for years. Remembering who she had been, it was like we had been watching her fade away.

Anticipatory Grief: the nitty gritty

Here is the thing about grief – though we think of it as something that happens after a death, it often begins long before death arrives.  It can start as soon as we become aware that death is a likelihood. Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve.

Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression. These complicated emotions are often coupled with the exhaustion that comes with being a caregiver or the stress of being left alone when someone goes to war or is battling addiction. We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread. More than that, in advance of a death we grieve the loss of person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses. This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.

When we know a death is imminent our bodies are often in a state of hyper-alertness – we panic whenever the phone rings, an ambulance must be called, or when our loved one deteriorates. This can become mentally and physically exhausting.  The same is true of watching a loved one suffer, which is almost always part of a prolonged illness. Caring for them as they suffer takes an emotional toll on us. These things (and others) can contribute to a sense of relief when the death eventually comes, and a guilt that can come with that relief. These feelings are common and totally normal when someone has experienced an anticipated death. And yet we feel guilty for this relief, thinking it diminishes our love for the person. It doesn’t, of course, but this relief can be a confusing feeling. We sometimes need to consciously remind ourselves that the relief does not change the deep love we had for the person, rather it is a natural reaction to the illness.

There have been numerous studies showing that anticipatory grief can reduce the symptoms of grief after a death but, as always with grief, there are no rules. There will be times that anticipatory grief may reduce the intensity of grief following a loss, then there are many times that the grief following a death is not impacted at all. For a great review of the research on anticipatory grief (and understanding of why much of the data conflicts), see this article by Reynolds and Botha. What is important to keep in mind is that if you are grieving with less intensity or for shorter duration than other losses because of the anticipatory grief you experienced before the death, that is totally normal! On the flip side, if you do not feel your grief is diminished despite it being an anticipated death, that is totally normal too! Convenient, eh? There is no formula for how an anticipated loss will impact us because we all grieve differently.

Things to Remember When Dealing with Anticipatory Grief

1. Accept that anticipatory grief is normal. You are normal and feeling grief before a death is normal.  You are allowed to feel this type of grief. Seriously. This is a common phenomenon that has been documented for nearly a century.  You are not alone!
2. Acknowledge your losses. People may say annoying things like, “at least your mom is still here” that minimize what you are experiencing. Allow yourself to acknowledge that, though the person hasn’t died, you are grieving. Consider journaling, art, photography, or other creative outlets to express the emotions around things like acceptance of the impending death, loss of hope, loss of the person you once knew, loss of the future you imagined, etc. Explore mindfulness (we have a post on that here) as a way of being present and aware of the many emotions your are coping with.
3. Connect with others. Anticipatory grief is common among caregivers, but unfortunately when all your time is consumed with caregiving you may feel totally alone and isolated. Seek out caregiver support groups, either in your area or online, so you can connect with others who understand the challenges you are facing, including anticipatory grief. There is an online anticipatory grief forum that is active here if you are looking for online support.
4. Remember that anticipatory grief doesn’t mean you are giving up. As long as you are there for support, you are not giving up on a family member or friend. There comes a time where we often accept that an illness is terminal and that recovery is no longer a possibility. Though it is a reality, there can be a feeling of guilt that comes with that acceptance. Focus on what you are doing – still supporting, caring, loving, creating meaningful time together, etc. You are shifting your energy from hope for recovery to hope for meaningful, comfortable time together.
5. Reflect on the remaining time. Consider how you and your loved one will want to spend that time together. Though what we want may not always be possible, do your best to spend your remaining time together in a way you and your loved one find meaningful. If your loved one is open to it, you may want to discuss practical matters, like advance directives and funeral arrangements to ensure that you are able to honor their wishes (rather than being stuck having to guess what they would have wanted).
6. Communicate. Just like we all grieve differently, anticipatory grief is different for everyone. Expect that everyone in your family may be experiencing and coping with anticipatory grief in different ways. Keeping the lines of communication open can help everyone better understand one another. If you are planning for the remaining time to be meaningful and comfortable, make sure to include all the important family members and friends in those discussions.
7. Take care of yourself. I know, vague and way easier said than done!! But it is true. Check out our posts on self-care (for normal people), yoga, and meditation for some ideas of ways to take care of yourself. Remember the old cliché, you can’t take care of others if you don’t take care of yourself.
8. Take advantage of your support system. Caregiving and anticipatory grief can be a long road. Do an assessment of your support systems so you know which people may be able to help you out (and who you may want to avoid!). We have a great support system superlative journaling activity to help you out with your assessment here.
9. Say yes to counseling! I know, there are still some of you out there who may think counseling is just for wackadoos. I am here to tell you that is just not true! Counseling is helpful for normal, everyday people who just need a place to process complicated emotions and have some you-time. So just say yes to counseling if you are feeling overwhelmed with the feelings of anticipatory grief. You can check out our post on finding a counselor here.
10. Relief is normal. In the case of anticipated loses there can be months, years, and even decades of caregiving that can be overwhelming and exhausting (though adjectives don’t even seem like enough!). When someone dies there can be a sense of relief that is completely normal, but that can also create feelings of guilt. Remember that feeling relief after an anticipated death does not mean you loved the person any less. It is a normal reaction after a stressful and overwhelming time in your life.
11. Don’t assume. Just because your loss was an anticipated loss, do not assume this will either speed up or slow down your grief after the death. We have said it before and we will say it again: we all grieve differently.