Families can sometimes experience profound grief for a loved one, even when that loved one is still alive. These feelings are known as anticipatory grief.

The grief may come from the fact that a loved one has a terminal or life limiting illness and they know they will die. Or it may arise from the fact their loved one’s personality has been changed by their illness.

Anticipatory grief is also often a combination of both of these factors.

What is anticipatory grief?

People who experience anticipatory grief may suffer all the same emotions as someone who is grieving for a person who has died – and yet often the condition is often not spoken about.

People may feel an overwhelming sense of sadness, and a sense of loss of that person’s central role in their life.

Carers may feel the heavy burden of the responsibility of caring for someone in the final stages of their life. They may even grow to become resentful of their loved one.

Loved ones may feel they are in a constant state of alert and uncertainty as they don’t know when the end will come.

They may feel distracted and distanced from other parts of their life as their thoughts jump from remembering their loved one, to caring for them, to worrying about the future without them.

People may feel fearful about carrying on without that person in their life, and all the changes it will entail.

They may feel guilty they’re not doing enough for them.

Anticipatory grief is especially common for the loved ones of people living with dementia, as memory loss can dramatically alter personalities and mean loved ones are no longer recognised.

When a person experiences anticipatory grief, it doesn’t mean they won’t also experience grief after their loved one dies.

“My friends who have lost parents do not understand because she is still alive”

Many of our readers have shared with us their own experiences of anticipatory grief when we’ve written on the topic previously. Reading about others experiencing the same emotions they are going through has helped them, many say.

Karen Thielke wrote, “I appreciate any comments shared by other families going through this [anticipatory grief]. It always helps to know that there are others sharing these feelings.

“Your article… is exactly what I am going through with my 100 year old mother. My friends who have lost parents do not understand because she is still alive…”

“It’s hard to describe the way I feel,” wrote Jenny Percival.  

“I even feel guilty that I have thoughts getting angry at him that he is leaving me, but mostly I cry. I feel robbed of him and our life together of what should have been. I love him so much. I’m 58 now and he is turning 64 in February. I have been with my husband since I was 14. I don’t know my life without him.”

“Crying when he is not around feels like my heart is ripped out. I try not to think too much of the future, rather try to live for the day. He gets sad too, knowing what this disease has done to us.

“Even sitting here, trying to put words together, it makes me cry. It’s a grief that didn’t go away and we don’t know how long he has left on this earth, so we try to carry on each day as normal as possible.”

Finding new ways to connect

When my father was ill with a brain tumour, his personality changed. Over time, I came to realise that the person I knew and had relied upon my whole life, was no longer there.

I mourned the loss of my father, and the empty space he was leaving in my life, before he died.

Even though his personality had changed, we found new ways to connect with dad. We were lucky, he still knew who we all were, but the way we spoke to him was gentler, kinder, more loving. We relied more on touch and music than conversation, which had, until then, been our main form of communication.

Sometimes glimpses of his old personality would emerge, surprising us all. On his very last night, he talked about his happiest memories and his irreverent sense of humour remained in tact, keeping us all laughing despite the profoundly sorrowful emotions we were all feeling that evening.

Jenny Harris also wrote to HelloCare about her experience of anticipatory grief – but her story has a happy ending.

“Two years ago I was told that she [her mother] would be gone within three months and I pre-grieved – then she got better!”

Please note: The image used to illustrate this article does not refer to actual people or events. Image: iStock.


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