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Anticipatory Grief – What Is It and How Do We Recognise It?

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 By Mette Nielsen, Counsellor.

Every one of us will be experiencing the loss of a loved one during our lives. Some of us will be carers for a short or a long time due to illness or a life limiting condition. We may experience feelings and emotions which we find distressing and difficult to manage and this is known as ‘anticipatory grief’. Recognising anticipatory grief may help to make the most of the time you have together.

What is Anticipatory Grief?

You may mourn the loss of the person you are caring for even while they are still alive. The grief you are feeling may not only be for the person who is dying but the life you currently lead. Your life and relationships may have changed dramatically when you became a carer. You will have taken on a great responsibility and may find you are no longer able to plan things, which can be stressful and might leave you feeling guilty. You might have fear, anxiety or panic about “What is going to happen next?” and “How will I manage?” which can take a great toll on your mental wellbeing and stability. This may lead you to feeling unable to concentrate or being distracted. These are normal when you experience anticipatory grief.

The process of anticipatory grief is described as three stages:

  • Experiencing shock about the upcoming loss
  • Denying the reality of the loss
  • Eventual acceptance

What are the signs of Anticipatory Grief?

Anticipatory grief is a normal part of mourning when someone is expecting a death. The signs of anticipatory grief are similar to the grief we feel after someone has died. You may be feeling a whole host of things like anger, frustration, desperation, depression, anxiety, isolation, panic, insecurity, guilt, shame or even being fed up. These are all normal and natural to feel as part of the process.

Not everyone will experience this or you might feel reluctant to talk about how you feel because you may think that it will take the focus away from the person who is dying. Although you may feel it is inappropriate to say it out loud, you may wish that it was all over. It is also natural to feel like that. It is important to remember that we all experience grief in different ways.

Anticipatory Grief includes some differences to the grief we feel after someone has died, and you might experience the following:

  • Increasing concern for the dying
  • Imagining or visualising what the person’s death will be like
  • Preparing for what life will be like after a loved one is gone
  • Attending to unfinished business with the dying person

How can we best use this time?

This time can be particularly helpful for various reasons as it allows time to prepare and time to talk.

  • Allow feelings of grief to help you prepare – understand the stages of grief, how they may affect people differently. Express your feelings through talking to a friend or family member, a counsellor or a spiritual or religious mentor.
  • Educate yourself about what to expect – research a particular illness or condition or read about other people’s experiences and how they have overcome similar difficulties.
  • Connect with others may have similar experiences – contact local support groups or charities. Being able to talk about and share your experience with others who have some understanding will help to reduce stress and feelings of isolation and loneliness.
  • Enlist help and continue to live your life – Reach out to services such as hospices and other healthcare providers for help and advice. They can offer professional support and guidance with additional care, funding, and other financial, medical and psychological support you may need.
  • Include your friends and family- keep them updated on what is going on and don’t forget to ask for help and support from them too.
  • Create moments your loved one can enjoy – looking at photographs, reminiscing of fond memories and telling stories, playing your favourite games, listening to your favourite songs together.

You will be experiencing feelings and emotions which may be distressing and difficult to manage, however, you can minimize the anxiety and stress of anticipatory grief by staying physically and mentally healthy.  Here are some helpful practices and you can do whatever you feel works best for you:

  • Manage your stress
  • Be realistic
  • Give yourself credit, not guilt
  • Take a break
  • Eat a healthy diet
  • Accept that there will be changes in your loved one’s health status
  • Know you aren’t alone

 

 

Helplines and information:

www.mind.org.uk

www.cancerresearch.uk

https://www.thegoodgrieftrust.org/need-know-info/pre-bereavement-advice/

Psychology Today: https://www.psychologytoday.com/gb/blog/stonewall-strong/201908/how-resilient-people-get-through-anticipatory-grief

Organising a Funeral During the Covid-19 Pandemic

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By Paul Hatchard, Chaplain

When a loved one dies, one of the last things we do for that person is to arrange their funeral.  Although this can be upsetting, making these arrangements can play an important role in the grieving process as we try to come to terms with our loss.

As with so many things at the moment, current restrictions mean that the way a funeral is organised has had to change.  This is the same whether a person has died due to Covid-19 or any other causes.

When you contact your funeral director to discuss the arrangements, they will be able to tell you about the restrictions that are sadly in place, which can vary between funeral firms and also between crematoria.

Be assured; funeral directors will work hard to accommodate all that you ask for, but they are also required to do all they can to minimise the risk of infection both to the group of mourners and to all those key support workers involved in organising the funeral.  Therefore, when you contact them they will be able to advise on such things as:

  • whether or not it will be possible to visit your loved one in the Chapel of Rest;
  • whether limousines or transport other than the hearse can be provided;
  • whether the family are able to act as coffin bearers;
  • whether the curtains are able to remain open during the service.

In line with Government guidance, funeral services should only be attended by immediate family who are not in a high-risk category, not self-isolating and do not have any symptoms of Covid-19.  Advice is to have as small a group as possible to attend the service and many funeral directors are limiting this to ten people or less.

Those who do attend will be asked to follow social distancing guidelines unless they are there with members from their own household.  This means staying two metres apart from other people and not being able to embrace or hug them.

Of course these restrictions can be upsetting for the bereaved family and it may feel that the funeral you want for your loved one is not going to be possible.

Do remember that once restrictions have been lifted, it might be possible to hold a memorial service to celebrate the life of the person you have lost and perhaps at that time you can include some of the things you think are missing from the funeral.  And of course, you will be able to invite everyone who would like to attend.

For those unable to attend the funeral, there are some things that can be done to make people feel a part of the service:

  • Discuss with the funeral director if they can live stream the service;
  • Have someone film it or take photos to share afterwards;
  • Give everyone you would normally contact, the date and time of the funeral so that people are able to mark the occasion in their own homes should they wish to do so. This could be by lighting a candle, reading a prayer or playing a significant piece of music.

People can be asked to share a memory about the deceased which can be collated and shared at some future point, perhaps at a memorial service.

Below are some further links which you may find helpful:

Cruse: https://www.cruse.org.uk/coronavirus/funerals

Government Guidance on Funerals: https://www.gov.uk/government/news/guidance-updated-to-support-the-safe-management-of-funerals

National Association of Funeral Directors: https://nafd.org.uk/funeral-advice/

Also, for those who have been cared for by Oakhaven, the Oakhaven Chaplaincy team is able to assist with funeral planning and leading of services. For more information ask for a Help Planning a Funeral booklet and/or email FAS@oakhavenhospice.co.uk or contact the Oakhaven Chaplain on 01590 670346 or paul.hatchard@oakhavenhospice.co.uk

 

 

Missing the Moment: Self Isolating when a Loved One is Dying

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By Steph McClean, Psychotherapist

When we have a loved one who is being cared for at the end of life, the choices and decisions we make matter. A key part of palliative care is about helping people make informed decisions in advance if they can; for example about where they want to die and how much medical intervention they might want when they become more unwell. This all forms the picture of what is known as a ‘good death’.

Where possible palliative care teams like to involve and support family members and other people close to the patient when making these decisions. Unfortunately however due to COVID-19, situations are arising where family are self-isolating and not able to be with their loved one at critical times including sadly when they are dying. Services are restricting visitors and others may stop visiting altogether.

This can be distressing for people for many reasons:

  • They may be used to seeing their loved one daily, particularly if they are a spouse, partner or someone they have been caring for at home.
  • They may have to stay away from their loved one for longer periods of time. Self-isolation is often at least 7 days, or 14 if you live with others. This can feel like a long time for someone if they know their loved one maybe in the last few weeks of life.
  • Choosing to be there and saying ‘goodbye’ towards the end and at the moment of death is an important part of the grieving process. Physical connection can be as important in death as it is in life, and people may wish they could hold their hand or offer comfort.
  • People may no longer have access to their usual ways of coping. Whether this is attending church, going to the gym, seeing a friend for coffee or going to see family, these things are no longer accessible.

When you are in self-isolation, these choices are taken away from you and can leave you feeling a whole host of feelings, from helplessness and frustration to numbness and distress.

Here are some suggestions to help you and your family cope with this:

  • Try and think about this situation ahead of time, and plan to put things in place to support you, your family and your loved one. Don’t be afraid to have difficult conversations a bit earlier than you’d thought.
  • Talk about what you can do for one another- if someone is able to visit, can they take gifts or help facilitate phone calls while they are there?
  • Use digital communication where you can. Video calls can be valuable.

 

  • Work with healthcare staff. This is an ongoing situation and will change. Nominate one member of the family to contact the unit regularly to get updates and then share with the rest of the family.
  • When speaking to healthcare staff, think about questions you have ahead of time and what you want to know.
  • Write letters, ask children to draw pictures, print photos and send them to your loved one for them to look at and read.
  • Record audio or video messages from family via a messaging app. These can be replayed and kept if needed.
  • Try and keep a rough routine for when you are self-isolating in order to maintain some normality within life at home.
  • Allow yourself some time to sit with your feelings. Don’t be afraid to cry, this is an understandable reaction to a difficult situation.
  • Choose an item of your loved one’s clothing, a cushion or something meaningful, and hold it close to you. This will offer some physical comfort.
  • Focus on looking after yourself. It may be the last thing on your mind, but spending some time focussing on your own wellbeing is important.
  • Think about self-care that you can do. Can you alter your usual coping methods? For example, rather than meeting a friend for coffee, arrange a phone call with a friend at 11am and have a chat while you have your coffee at home.
  • Get outside. Try and get some time outside in the fresh air if you can. This can help clear your mind and calm you down.
  • Reach out to others in your family. Many will be at home and most likely able to take a phone call.
  • Ask for help if you are becoming very distressed. Phoning a support line can help.

A list of helpful resources are available on our website:

What is a ‘good death’? https://www.mariecurie.org.uk/blog/what-is-a-good-death/48655

Self Isolation advice- https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-advice/

Emotional Wellbeing links- https://www.nhs.uk/conditions/stress-anxiety-depression/

Useful support contact list- https://www.oakhavenhospice.co.uk/wp-content/uploads/2020/03/Helplines.pdf

 

How Mindfulness Can Help in Times of Crisis

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By Paula Noyce, Counsellor and Mindfulness Practitioner

Please don’t stop reading already, I am not going to be suggesting we ‘om’ ourselves through the next four months,,,,

We are, indeed, living in a time of crisis unprecedented in our lifetimes and it is an extremely uncomfortable experience, whether we are frontline professionals or witnesses to the experiences of others.

Mindfulness shows us that experience is sensed first (sight sound smell touch taste) and then interpreted by the mind, albeit so fast we don’t realise it. How we feel emotionally becomes how we feel physically.

When this is the total of how we experience our life, we can become tired and drained.

I found a great Rumi quote: ‘Don’t be the rider who gallops all night and never sees the horse that is beneath him’. 

If you wish to, try this noticing exercise:  If you can, have a small drink with you and take a couple of really small sips before you begin, barely enough to wet your lips.

Then, see if you can gently begin to take your attention along the highlighted words below.  Just notice your responses, this is not a test.

Difficult  Involved  Dangerous  Skilled  Striving   Valued   Fear  Stable  Confused

Anxious   Stoic   Clarity   Simple  Desperate  Safe  Peaceful   Calm  Ease   

How are you feeling now? Perhaps you got two words along and didn’t want to continue. That’s ok, it’s not a test. Notice whether you are judging any of your responses and then simply take a sip of your drink.  Try to stay aware of swallowing it. Then, if you wish to, continue the exercise

Direction   Unknown  Pause  Unbalanced  Relief  Exhausted  Resolve  Isolated

Allow  Discomfort   Brave   Uneasy   Heightened   Spacious  Stressed   Rested   

Revived   Relaxed   Centered   Known   Dread   Grounded  Yield

Perhaps you chose to stop next to a particular word.  Notice how you feel now. If you wish to reflect on the experience, see if you can do that from a sense of curiosity.   There is no right or wrong, simply your awareness of your experience.

Mindfulness can’t cure the Coronavirus or change what is happening, but it can change the way we experience ourselves in it.  By developing a non-judgmental self-awareness we give ourselves the chance to choose a gentler perspective with some moments of mindfulness.

In troubled times it can be difficult to trust that the simplicity of a moment of mindfulness will make any difference at all. If a mindful moment is simply ‘stopping to notice the shape and rhythm of your breathing and see if it could soften and deepen back into a regulated pattern without judging any of the process’ (mindful.org), it might feel too simple to help us work through such difficult moments, as the effort of galloping through the night on our horse as Rumi suggests. But it doesn’t mean we won’t try and help, rather support ourselves while we are trying.

If the idea of mindfulness is too much like navel-gazing for you, try thinking of it as being a great tactician.

Whatever the words are that will invoke in you an awakening to the fact that a mind that needs to achieve needs a body that can carry it, please don’t stop here…..

Journeys bring power and love

back into you.

If you can’t go somewhere,

move in the passageways of the self.

They are like shafts of light,

always changing, and you change

when you explore them.

Jalaluddin Rumi

13th Century Sufi Poet

If you would like to know more about mindfulness and how it can help, here are some links and suggestions:

For tactics, read Sun Tzu’s, The Art of War

Try Dr Sarah Allen’s seven simple grounding techniques for calming down (drsarahallen.com/7-ways-to-calm)

Try watching the brilliant TedTalk given by Kristin Neff called, The Space between Self Esteem and Self Compassion.  TedxCentennialParkWomen – YouTube