Anticipatory grief can affect carers who start to mourn the loss of a loved one from a long illness before they actually die.
This is because the lead up to someone’s death can be emotional and overwhelming, especially if they are suffering.
And anticipatory grief is an outlet for some of those complex feelings, which can carry over after bereavement.
Let's take a closer look anticipatory grief, what it is and how to cope with it when caring for a loved one.
Here’s a summary of what we’ll cover:
- Anticipatory grief can be experienced by loved ones, especially caregivers of someone who is going to die.
- You can feel symptoms of grief and be grieving while they are still alive, but it feels as if they have already died.
- This type of grief is totally valid and understandable, and may especially affect those caring for a loved one with dementia.
- It’s normal for carers to experience feelings of grief about the changes to their loved one.
What is anticipatory grief?
Anticipatory grief is when someone is experiencing overwhelming feelings of grief while their loved one is still alive.
Especially when caring for a loved one who is elderly, or has a terminal illness, anticipatory grief sets in based on the certainty that they will die.
This causes people to preemptively feel immense pain, sadness, guilt or maybe even anger, as if their loved one has died.
What are the common symptoms of anticipatory grief?
The symptoms of anticipatory grief and how it affects you as a carer are similar to actual feelings of grief.
It is common to feel the following feelings while grieving, but remember that everyone is different and there is no set way you should feel.
Signs that you are grieving
- Sadness or depression
- Anger at yourself or your loved one
- Anxiety, guilt or fear of the future
- Mood swings
When does anticipatory grief occur?
As the name suggests, anticipatory grief begins when a loved one is in the later stages of their life, but before they’ve passed away.
It isn’t a certainty of the grieving process, but it could affect carers who are seeing their loved ones suffering.
Or going through big changes in character and appearance as a result of an accident such as from a fall or from a progressive condition.
Who can experience anticipatory grief?
Grief affects every person differently and may occur at any stage of the grieving journey.
Similarly, your loved one may not have an obvious medical condition, but may be deteriorating due to old age.
In any case, family carers for elderly people are most likely to be affected by anticipatory grief, as well as close family members and friends.
Anticipatory grief and dementia
Caring for a loved one with dementia can bring up a lot of emotions that are difficult to navigate as a caregiver.
While you are dedicated to the care of your loved one, either full-time or with the support of home carers, it’s not an easy job.
Plus the way that dementia, as well as other conditions that affect cognition, changes your loved one can be a tough pill to swallow.
You may have to put up with abuse and accusations or watch your loved one in pain or distress.
Family dementia caregivers and grief
In an article for the publication The Gerontologist (2009), authors Caitlin K. Holley, MA, Benjamin T. Mast, PhD write that:
“Family caregivers for dementia experience a particularly tragic variant of anticipatory grief due to the decline in both cognitive and physical abilities of their loved ones.”
As well as grief for their loved one with the disease, anticipatory grief for carers can also be a response to their own life.
This can be seen as loss of personal freedom, worries about the future, changes in roles which produce conflict, and disruptions in day to day life.
How are dementia caregivers affected by anticipatory grief?
The authors expand on this view with reference to a study of a group of dementia caregivers, who track the sources of their feelings of grief.
In a study of 94 caregivers, these common grief reactions were:
- loss of relationship ( 52%)
- changing communication with the care recipient (32%)
- loss of freedom (31%)
- loss of future plans (30%)
In response to an open question about what they had given up due to their role as a caregiver they were grieving the loss of:
- social and recreational activities
- control over life events
- personal well-being
All of which can most definitely lead to the experience of grief prior to death for some caregivers.
Understanding anticipatory grief as a carer
As a carer, you are under immense amounts of pressure to be strong for your loved one and solve problems whenever they arise.
But knowing that someone will die is a problem you can’t solve, and that can make you feel helpless and overwhelmed.
Your grief may be premature in this sense, but it is equally valid – meaning that carers must recognise this and help themselves to get through it.
Some uncomfortable thoughts and feelings may arise at this time, such as wishing it were over, but this is normal and shouldn’t cause guilt.
Coping with anticipatory grief for carers
In order to cope with anticipatory grief as a carer it’s important that you acknowledge and accept your feelings.
Knowing that they will pass is key, but this could take some time and it’s best to find ways to help you manage this in the meantime.
To help you come to terms with this you can practise accessible self-care techniques that will help you cope with grief, such as
- mindfulness and meditation
- exercise and getting outdoors
- talking with a counsellor, friend or grief professional
Practicalities of grief
When dealing with the emotions of anticipatory grief and how it affects you as a carer, it can help to think practically when possible.
Setting up measures that will help your loved one as their care needs increase can help ease anxieties for the future.
This could relate to decision making like what care they will receive or what happens to their money or home after they die.
Choosing the right care
If you are experiencing anticipatory grief, you may have watched your loved one’s condition progress significantly.
This not only changes their character and appearance, but means that their care needs may also be changing.
That they have the right care is essential to maximise their comfort and calmness during what can be a distressing time.
Grief after bereavement
Anticipatory grief and how it affects you as a carer is concentrated in the time before your loved one dies.
So when they actually do die, there may be an influx of feelings, both old and new, that mark a change in your grieving journey.
In some ways, coming to terms with your loss during the anticipatory grief period may actually help you in the time after your loved one passes.
Having learnt coping mechanisms for grief and found what works for you, you may be able to help others who are grieving.
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