In 2012, I lost my dad to Dementia. My grief started long before his death.

Dementia – like other long term or terminal illnesses, causes family and friends to experience what’s known as ‘anticipatory grief’. When we know a loved one is approaching their end of life, we may feel pain, sorrow, fear, despair and a whole range of other emotions. This is anticipatory grief.

What exactly is anticipatory grief?

Anticipatory grief is described as grief that occurs before death (or it could be another form of loss), rather than the grief we experience after loss and death. The most important thing to remember is that anticipatory grief is a normal response, even if it isn’t talked about as often as other forms of grief.

According to the National Cancer Institute, “Common or normal grief begins soon after a loss and symptoms go away over time. The emotional responses come in the wake of the actual loss and a person may feel anxiety, anger, depression and other debilitating symptoms that can affect day-to-day living for a period of time. With anticipatory grief, however, the feelings of loss and pain stem from imagining what life will be like without a loved one. This may lead to anxiety and depression because of the fears associated with anticipatory grief.”

When can you experience anticipatory grief?

This type of grief can be inclusive of many losses and fears, such as:

• The loss of a companion.
• Fear of being alone.
• Loss of independence.
• Loss of social life.
• Changing roles in the family.
• Fear of financial changes.
• The loss of future plans / dreams.

Not everybody experiences anticipatory grief and it’s neither a “good” or “bad” thing. It’s just different to other forms of grief in that it can involve more extreme or strongly felt emotions, such as anger and loss of control.

This isn’t surprising when you find yourself in a weird “no-man’s land” is it?

It doesn’t replace the grief you experience after a loved one has died and it isn’t a shortcut to getting over your loss. But the good news is that it can be dealt with in the continuum of grief we find ourselves in. The important thing is to recognise – and admit- that you need help.

Here are some of the signs and symptoms of anticipatory grief:

Sadness: Sadness and tears seemingly come out of nowhere. Small things such as an advert or a song can trigger these feelings. It may feel like a sudden and painful reminder of the reality you find yourself in. It’s almost as if it’s the first time you’re aware of your impending loss. Groundhog Day springs to mind.

Fear: Feelings of fear are common and can range from the fear about losing a loved one or you’re own death), to fears about all the changes that will occur after you’ve lost a loved one, such as how children will be cared for and how you’ll manage.

Anger and frustration: You may experience anger, annoyance, and frustration. It can even lead you to question many things for which you don’t have an answer to. It can also be about coping with a loved one’s anger or that of the family around you. You may also feel easily triggered.

Loneliness: Loneliness is often experienced by caregivers and the family of someone who is dying. Unlike grief after a loss, the feeling that it’s not socially acceptable to express anticipatory grief can add to feelings of isolation.

Anxiety: When you are caring for a loved one who is dying, it’s like living in a state of heightened anxiety most of the time. Anxiety, in turn, can cause many physical symptoms. If you already have anxiety, then you may experience a spike. Go and see your GP about this.

Guilt: I remember this well. The time prior to a loved one’s death can be a time of great guilt – especially if your loved one is suffering and you long for their suffering and pain to end. At the same time, you fear the actual death so there is an inner conflict that arises. You may also be experiencing survivor guilt, a guilt that you will be able to continue on with your life while someone else won’t.

Rehearsal: You could find yourself visualising what it will be like to have your loved one gone. Many people feel guilty about these thoughts, but they are normal and part of accepting the loss.

Poor concentration / forgetfulness: When you are pre-occupied with everything you’re dealing with and need to arrange, it’s normal to experience poor concentration or forgetfulness. It may help you to keep a note of things you want to get done.

Numbness: It’s possible that you don’t feel any emotion at all, or have periods like this. It’s important to recognise that this is also a normal response. If this numbness is prolonged, you may want to have a chat with a professional.

Fatigue: Looking after a loved one is exhausting, so add in the emotional roller coaster of anticipatory grief, then fatigue can kick in. You may also experience difficulties in sleeping. Please seek advice from your doctor because sleep is vital on this journey.

If this sounds like you or somebody that you know, then please get in touch.

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