Anticipatory grief

Thank you to nurse Karen Dutton for contributing this blog.

Losing a loved one can be devastating. If they have a serious or life-limiting illness, then grief can begin long before their death.

Anticipatory grief is grief before a significant loss occurs (death or non-death related). It can lead to isolation, particularly when people fear that others will not understand.

Grief before a loss is rarely talked about. People often feel they cannot talk honestly about how they are feeling or their experiences as they fear being judged. The stigma the surrounds liver disease can make talking about it even harder.

The impact of anticipatory grief varies among individuals. It is as unique as any other type of grief. We need to respect the person and provide safe spaces for people to talk openly about what they are going through without the fear of judgment.

I feel so guilty, my husband can’t help being ill, but I feel trapped and resentful at what we’ve lost

People are often unaware that they are experiencing this type of grief. It may go on for years so it becomes a norm, like a white noise in the background. There but not understood. Yet it can have a significant impact on a person’s mental and physical health. It can affect all aspects of life.

The image below was shared with me by someone who attended an anticipatory grief awareness session after her mother was diagnosed with a life-limiting illness. It reflects how anticipatory grief affected her life in ways she had not recognised at the time. She explained that learning about anticipatory grief and its impact helped her understand her experiences better.

The impact of anticipatory grief

Relationships

It can be hard to keep relationships going when you are experiencing anticipatory grief.

Changes from the disease can make it hard to have the same relationship with your loved one. This could involve a change to your role in the relationship. Or different demands on time due to care needs and the reduced abilities of your loved one.

Increasing care needs and reduced ability to plan ahead can also make it hard to sustain the same relationships and routines with friends or other family members.

 Identity & Self Worth

These relationship changes can impact how someone feels about themselves, for example:

• No longer the daughter but the carer.
• No longer the full-time lead at work but part-time support.
• Reduced confidence in ability to cope “Am I doing the right thing?”
• Reduced self-esteem.

 Emotional & Physical Health

One GP practice had seen an increase in patients with physical health symptoms but often tests and investigations were negative. However, on reflection they noticed that several of these patients were caring for loved ones with a life-limiting illness. They recognised that they needed to review how to support their patients more effectively.

There is no health without mental health. Constant background worry/anxiety/unknowns can impact on all aspects of life.

Working Life

Anticipatory grief can also impact people at work.

• Reduced hours – less involvement in key pieces of work.
• Less interest or motivation.
• Feeling of being “left out of the loop” – harder to keep updated or concentrate.
• Concern that quality of work is suffering & feeling judged for that.
• Feeling labelled.
• No longer able to be involved with colleagues in the same way around work-based interests.

Money

Work problems can of course lead to financial problems. Reduced working hours can reduce someone’s ability to:

• Socialise with others.
• Meet their usual monthly bills.
• Continue to enjoy hobbies and outings.

Social Isolation

All of the above can combine with:

• lack of motivation to meet with others
• lack of energy & increased tiredness
• unpredictability of illness & care needs
• being unable to plan in advance
• fear or guilt

and increase the risk of social isolation, at a time when someone may be most in need of support.

Signs of anticipatory grief

Many people caught up in the whirlwind of caring for a loved one do not realise that they are experiencing anticipatory grief. But there are emotional and physical signs that you can look out for.

Emotional signs:

• Tearfulness & sadness
• Guilt, shame, isolation
• Anxiety, dread or depression
• Irritability & anger
• Increased sense of worry or concern for the dying person
• Rehearsing or visualising the impending death (or life changes/limitations)

 Physical signs

• Headaches
• Stomach discomfort
• Tightness, or heaviness, in chest or throat
• Difficulty breathing
• Feeling very tired and weak
• Dry mouth
• Increase or decrease in appetite
• Sleep problems
• Oversensitivity to noise
• Aches and pains.

What can help?

Remember – you are not alone.

You deserve help and support and getting it will help you to carry on supporting your loved one.

There are some things you can try for yourself, for example:

• Write down thoughts, feelings and memories
• Learn about the condition
• Try to get enough sleep, keep active and eat regular meals
• Start having conversations you have been avoiding
• Try to see friends and family when you can to avoid social isolation
• Don’t be too hard on yourself. You are in an incredibly difficult situation, it is totally normal to find it hard.

But it is also important to reach out to others for help.

This could just mean talking to someone about how you are feeling. Or you may find it easier to get outside support.

The British Liver Trust offers a range of support services. These are for anyone with a liver condition and for their family and friends. Support options include an online forum, online support groups and our nurse led helpline.

• Find out more about support services.
• British Liver Trust information for family, friends, and carers.

There are also other organisations that offer specialist support. These include:

• Marie Curie Support Line
• The Good Grief Trust – pre-bereavement advice
• Cruse – Pre-Bereavement Support

Karen Dutton is a Registered General Nurse and Outreach & Engagement Officer for Eden Valley Hospice & Jigsaw in North Cumbria.  She has many years experience of supporting patients and loved ones through grief and delivers online grief awareness sessions to increase people’s awareness and understanding of grief and bereavement support.