(Jo Goodwin-Worton is a psychologist and grief, loss, and bereavement specialist associated with the organization, Grief Specialists, in the UK. She is author of the books “Caring for Cancer, the Real Journey” and “Back to Normal”, a collection of stories about real people and their lives following a bereavement or loss. Having had first-hand experience of grief herself, Jo can relate to readers’ grief and loss. This article, used with permission, appeared online at https://www.
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As a caregiver, facing the terminal diagnosis of a loved one can feel overwhelming.
Imagine you are sitting in a serene field with your loved one. The sun is shining and you feel happy. Then imagine later that day, being told that your loved one is ill or worse, the condition is life-limiting. The future of that morning suddenly has a very different outlook, and your priorities understandably change, with a re-prioritization of both your physical and emotional world.
The impact of hearing a terminal diagnosis can mean that as a caregiver you almost instinctively change to a caring role, often putting yourself second to your loved ones needs. However, when the visitors or medical professionals have left, you often find yourself at one with your own thoughts of emotional preparation.
After learning of a loved one’s terminal diagnosis we can sometimes start to experience a sense of anticipated grief. Anticipated grief is experiencing a feeling of loss before someone dies. It is often referred to as a way of emotionally preparing ourselves for a future bereavement.
As a caregiver, facing the terminal diagnosis of a loved one can feel overwhelming, as you manage caring for your loved one while trying to process the knowledge that they are going to die.
Instinctively, the immediate focus is on quality of life and ensuring that a loved one’s needs are cared for through the support of additional clinical professionals, family and friends. However, it is important to recognize that self-care can be an important aspect of that journey too.
Anticipating the bereavement of a loved one is emotionally and physically demanding. Often the focus is on the feelings surrounding the loss of the person, along with additional losses which impact on future life such as worries about finances and housing.
The losses associated with a bereavement are often as challenging as the bereavement itself and can have both short and long term effects for the caregiver.
One example of anticipatory grief is a loved one who has been given a dementia diagnosis. It is often said that a sense of grief occurs after the diagnosis, due to the cognitive and physiological deterioration which results in many people feeling like the person they loved is only living in their physical sense. Understandably, this can be incredibly distressing for all those involved.
A further example is a terminal diagnosis of cancer. Having been through this experience myself, I would liken it to being on a journey through many different complex feelings and emotions. One day those emotions can be full of hope and optimism, yet in a heartbeat you can often feel very lonely, disoriented and scared.
As a caregiver, you do your utmost to provide the best possible emotional and physical support for your loved one with little to no hesitation, yet those feelings of anticipatory grief can often feel confusing and overwhelming at times.
Being able to share those thoughts is incredibly helpful, and seeking support can be beneficial both before and after a bereavement. Anticipatory grief is a very real emotion and one which is difficult to truly understand, as everyone reacts and grieves differently.
Facing end of life care for a loved one is one which is full of uncertainty for caregivers.
There may be no definitive answers to all the questions you have and there may also be so many ‘What if?’ questions as you try to comprehend the significance of a diagnosis and come to terms with the future. Anticipatory grief is more than just emotionally preparing for a bereavement. It is also about finding a way of understanding the future after a bereavement.
The impact of anticipated grief for care givers can be overwhelming. Providing personal and physical aspects of end of life care for a loved one is often complex and is individual to each and every person, so it is important to recognize that there is no right or wrong way to feel during that time.
When you are facing a loved one’s terminal diagnosis, it is okay to feel scared, yet it is also okay to feel that you are preparing yourself for a very different future than what you had planned.
Talking with a loved one can additionally help you to process the feelings associated with anticipatory grief. We often avoid speaking honestly as we don’t wish to upset our loved one, when actually, the opposite is true. By sharing our thoughts and emotions we can be better prepared to handle the emotions when end of life nears.
It can be helpful for a loved one to talk about their wishes and to express their feelings, as it can often offer a sense of ‘peace of mind’, whilst for the family and caregivers it can be comforting to know that you are listening to the needs of your loved one. After a loved one dies, it is often what we did that offers us comfort, rather than the questions which surround what we ‘wished we had done’ or ‘wish we had said’.
Talking about death, dying and bereavement is never going to be a subject that we openly want to talk about, yet it is incredibly important as it offers the chance to ask the questions which really matter.
End of life care is time limited so being able to talk about decision making and personal feelings is an important and integral aspect of the grieving process for all involved.
There are some legal options you can also consider when a person is at the end of life, such as advance directives, which provide information and guidance on health and social care decisions about treatment options. These should be discussed with your medical teams as they can be beneficial when talking about personal preferences.
Experiencing anticipatory grief is common. However, does it make bereavement easier? That answer is as individual as the loved one’s diagnosis itself and once again there is no right or wrong answer.
What I do believe is that having an understanding of what is happening, and asking questions if you are unsure about absolutely anything, is important, so that you can at least stay informed as you care for your loved one throughout their end of life.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
A study reported in the Journal of Pain and Symptom Management at https://www.sciencedirect.com/science/article/pii/S0885392410007062 concluded that:
Preparatory grief is a normal event… A delicate balance between holding-on and letting-go needs to be maintained for an optimal grieving process toward an “appropriate death.”