The long goodbye

“I can’t believe this is happening to my Dad” are the words that I screamed inside my head every day for months. He had been diagnosed with dementia and, after a brief sense of relief that we now knew exactly what we were dealing with, I was devastated.

It felt like my life had been turned upside down and when I thought about my Dad all I could see were losses: losing his personality, losing his independence and ultimately losing his life.

I wasn’t ready

I wasn’t ready to say goodbye to the Dad I knew. I shed many tears and felt anxious, helpless and low as I struggled to come to terms with the new reality that had been forced upon my family. He hadn’t died but the intense feelings that I was experiencing felt like grief and following some research online it became clear that it had a name: anticipatory grief.

This insight helped me to allow myself the time and space I needed to grieve and to look after myself.  I have discovered that if I focus on the present, I can cope but if I spend too long thinking about the future it can feel overwhelming and scary with the feelings of intense grief returning.

There have in this journey been surprising silver linings. I have learnt to be grateful for what I do have: time spent with my Dad now has special meaning and we are enjoying conversations about the past. Also having some idea of the journey ahead brings new meaning to the time we have left.

What is anticipatory grief?

Anticipatory grief or grief before death can be experienced by caregivers and family members of those suffering from dementia, cancer, and other illnesses which are life-limiting and no longer treatable. Not everyone in this situation experiences it; some people won’t countenance grieving as it could be viewed as losing hope, whilst for others the grief before the death can be even more intense than afterwards.

Many losses

Anticipatory grief involves many losses. It includes watching your loved one change and grieving the loss of the person you once knew, long before they actually die. There is also the loss of companionship, changing roles and loss of future plans and dreams. Fears can also overwhelm us: fears over whether we will be able to provide the support they need, how we will cope, what will happen and will they suffer, will they change, what it will be like at the end, when will the end be.

Amongst all of this there are also opportunities. It can be a time to share how you feel about your loved one, resolve any past issues and a chance to say goodbye. There may be conversations you have been avoiding and things you might like to say to your loved one. There may be activities that you can do together that bring joy.

Common emotions when you know someone is going to die

The emotions that accompany anticipatory grief are similar to those which occur after a loss but can be even more like a roller coaster at times. Some days may be really hard. Other days you may not experience grief at all.

Listed are some of the typical emotions associated with anticipatory grief. Although everyone grieves differently the following are all common.

• When you are caring for someone who is dying, you may find you feel very anxious all of the time. Anxiety, in turn, can cause physical symptoms.
• Sadness and painful feelings can come on very suddenly, often when you least expect it. Something you see or something someone says may be a sudden and painful reminder your friend or relative is dying. It can often feel as if it is hitting you for the first time over and over again.
• It’s very normal to be frightened – both of the death and of all of the changes that will follow this.
• You may find you feel very angry with the situation, or even with your friend or relative for leaving you. You may also have to cope with their own anger at their situation.
• Even before someone dies, it is common for the close family caregivers of someone dying to feel lonely. The illness may have changed the person you are caring for, or you may just lack people who you feel will understand what you are going through. Unlike grief after a loss, you may feel that this loneliness is not acceptable, and this can add to feelings of isolation.
• Guilt is also common. You may worry you are not or cannot do enough to help. You may be longing for your loved one to be free of pain, even as you fear their actual death. You may also experience survivor guilt because you will continue with your life while they will not.
• You may simply be exhausted – with caring duties, and with the constant worry for the emotional, physical, or spiritual issues your friend or relative is experiencing.
• Sometimes people find they spend time picturing what it will be like after their friend or relative dies, and thinking about how it will happen. Many people feel guilty about these thoughts, but they are very normal. They are part of preparing yourself for their death.
• Physical problems such as sleep difficulties and digestive upsets are very common before and after someone dies. Many people also find it very difficult to concentrate.

How to cope with anticipatory grief – some practical suggestions

• It’s important to express your pain and allow yourself the time and space to grieve. It may help to talk to a friend or another loved one that you can share your feelings openly with.
• Try writing down your thoughts and feelings in a journal.
• Online forums and support groups can help connect you with others going through something similar, helping to reduce feelings of isolation.
• Find out about what to expect by learning about the condition, treatments and side effects, prognosis. This information may help you feel more in control.
• Look after yourself by exercising, eating healthily and getting plenty of rest.
• Take time out to do things you enjoy and that help you to relax.
• Be kind to yourself – remember that you have a lot to deal with. Be realistic about how much you can do both practically and emotionally. Ask friends and family for help.
• Think about how you have handled tough situations in the past and use some of those techniques to help you cope.
  Try to focus on the day in hand rather than worrying about the future.

Getting support

The following organisations may be able to help

Alzheimers Society: www.alzheimers.org.uk
Marie Curie: www.mariecurie.org.uk
Macmillan: www.macmillan.org.uk
Local Hospices: www.hospiceuk.org