Today's post is about death, dying and bereavement.
This advice has been written by other carers of people with cancer and has been taken from our booklet Hello, and how are you? A guide for carers, by carers.
You can download the full booklet and find out more about how Macmillan can help carers. You can also join our carers group to connect with other carers and to share support and advice.
You might find some of this section upsetting so please think about how you're feeling and how reading this information might affect you before you read it.
This advice comes from carers' own experiences.
Death, dying and bereavement
‘It isn’t easy dealing with the death of a loved one, but do ask for help as soon as you can. Remember that your grief is not the same as that of other family members.’
Alex
The topics covered are
If you are caring for someone who is dying, it may be extremely difficult to confront this fact, especially if the patient has not accepted that they are going to die.
Those of us who cared for someone with terminal cancer found that talking openly with them made the situation less frightening for everyone involved.
You may feel you want to know what to expect if you are going to be with someone when they die. Remember that you can talk to one of the health professionals involved in caring for the patient – they may be able to help with any questions you have.
The person you are caring for may want to make decisions about where they would prefer to die and what sort of funeral they have. If you are clear about what you and they want, you can help to make arrangements.
It may not always be possible, but talking will increase the chance of making it happen. It can be comforting to know you’ve tried to help them achieve their wishes in their last days.
Information and support
Physical changes
The moment of death is not always recognisable but there are some changes or actions that indicate someone is dying. Knowing what to expect can help prepare you.
But you need to decide for yourself how much you want to know about the process of dying. Because each situation is different, your local hospice is often a good place to contact for information about what you might expect, or to ask questions about any particular worries you may have.
We found it important to know that when someone is dying they’re often still able to hear, even if they don’t respond - so keep talking to them.
You may be frightened to be alone with someone in their final hours. You could ask someone close to you - a family member, friend or healthcare professional - to be available to support you.
Denial
As a carer, you may have feelings of fear, guilt, anger, sadness or frustration, all of which can be magnified if the patient is in denial about the fact that they have a terminal illness. In some cultures and age groups this is an especially difficult issue.
It’s our experience that any solutions are individual and personal. However, we hope to shed some light on the issue. It’s important to remember that denial is not an unusual reaction - you’re not alone.
It can be very difficult if the patient and carer are at different ‘places’, for example one accepts the situation while the other prefers to deny it is happening. This can cause conflicting emotions.
Sometimes the patient may not actually be in denial, rather they are trying to protect friends and family by not admitting to how serious the situation is. As a carer, you may or may not recognise that this is the case.
It’s not just the patient who may experience denial. This could also affect you and might be an issue for family and friends too. Denial may mean that you aren’t able to share all your feelings with one another.
If you or the patient remains in denial about what is going to happen, it might not be possible to look at all the practicalities that need to be taken care of, such as the patient’s Will or other financial arrangements.
If there is denial, some things can be organised or talked about without being explicit that you are doing this because the patient is dying. For example, you may talk generally about finances, or suggest that you both update your Wills. It may also help you to simply relive old times together.
If you are worried that the patient is not accepting the reality of the situation, you can ask a health professional to talk to them. Specialist palliative care nurses, for example, are trained in listening and counselling skills. Spiritual support may be available in the hospital too.
If the patient is in denial, it’s okay to try and get them to talk about it. But if things don’t change, you may have to accept that this is the way they want to deal with it.
Denial can be a very strong coping mechanism and should always be respected.
If at any time you need help and support to cope with the fact someone you are caring for is in denial, ask - remember there are professionals ready to help you.
Feelings can change. If the patient begins to feel more ill, they may start to accept that they are going to die, but you as a carer may start to feel denial, particularly if they have lived longer than originally expected.
Healthcare professionals can make incorrect assumptions about your or the patient’s acceptance of the illness. It can be helpful to let them know how you really feel.
Practicalities
There are two useful booklets called What to do after a death in England and Wales and What to do after a death in Scotland. You can get these from libraries, hospitals or health professionals. You can also download the English version from the ‘Leaflets and guides’ section of the Jobcentre Plus website.
For information regarding Scotland, see scotland.gov.uk For information about what to do after a death in Northern Ireland, see nidirect.gov.uk
If you have the opportunity to plan ahead, it may be helpful to choose a funeral director and talk to them about arrangements. This can save you talking about practicalities when you are feeling emotional after the patient’s death.
Phone your GP or ‘out of hours’ service if the person you are caring for dies at home.
Be aware that funeral directors may charge you more if you use their night service. After getting the GP out to do the necessary paper work, and if you feel comfortable doing so, wait until the morning before speaking to the funeral director.
Occasionally a post-mortem may be necessary, for example if the death was sudden. This is a medical examination of the body to find out more about the cause of death. The doctor or coroner may consult you about this, so if you need more information, the booklets and websites listed above can help.
When registering a death, the registrar as you may need them for sorting out financial affairs, such as insurance policies.
Your chosen funeral director will guide you through all the formalities and practical issues relating to the funeral.
If the funeral is going to be a long distance from where the patient dies, it may be helpful to get a funeral director from the area where you want the funeral to be held. You do not need to have the person’s body removed immediately if you don’t want to.
Think about whether you want to be involved in the washing and dressing of the person’s body before they go to the undertaker. You can talk to your funeral director about this.
Funeral arrangements are personal and individual. For example, you don’t have to conform to timescales, you might want to take photos, and you don’t have to wear black. The patient may have mentioned the arrangements in their Will.
Remember to consider the religious or spiritual beliefs of the person you were caring for when it comes to arranging their funeral. Be aware that your plans can be affected by practicalities such as the availability of funeral services.
If you want to make a donation to charity in lieu of flowers, you may want to speak to that chosen charity first. They may be able to help you, for example, by providing collection envelopes.
Moods and emotions
Bereavement doesn’t necessarily start when someone dies. You may feel a sense of loss before the person you are caring for dies.
For example, you might already miss your relationship the way it used to be and all the things you used to do together.
Try to share your feelings of loss with the patient and grieve together with them and the family before they die.
Comfort each other and talk about the things in your lives together that have been good.
Give yourself time and allow yourself to grieve in your own way. You may want to share your loss with family and friends. Try to talk to them about how you are feeling.
Be prepared for other people’s reactions to death and respect each other’s ways of grieving.
However you react, feel and behave is okay - some of us felt numb, others felt relief; some of us went on holiday, others went to the funeral home every day.
Be aware that grief can manifest itself in physical ways too, for example, loss of appetite, insomnia or weight loss. Let yourself cry whenever you need to.
Some of us found we felt guilty - guilty that we were alive and the person we were caring for wasn’t, guilty for feeling relief, or guilty about looking to the future.
Take opportunities to talk about your loved one. Some of us found that having photos of them around the house, and even talking to them, could be comforting.
Your future
Think carefully before making any major life decisions just after the person you were caring for has died; consider putting decisions on hold at this time.
Think about how you want to deal with the patient’s clothes and personal items. You can do this how and when you want to. You might want to ask for help from friends and family. Some of us found that sorting out personal items can bring conflict in the wider family network.
You or your family and friends may find comfort in the traditions of other cultures. For example, in Japan they have a tradition of writing to and sending notes or photos to the person who has died.
Consider having a celebration of the person’s life. We also found it helped to make plans for days which may be particularly difficult, like birthdays and anniversaries, Father’s Day and Mother’s Day.
Your local hospice may have bereavement groups you can join. Also, consider bereavement counselling. For example, there may be a branch of Cruse Bereavement Care in your area for help and advice. Call their helpline on 0870 167 1677 or call Macmillan.
When a child dies, or when a child is bereaved of someone important in their lives, the right information, support and resources are vital.
Sometimes changing things around in the home to make it look a little different can help the process of moving on.
When you are bereaved of someone, especially a partner, things such as taxes and benefits can be affected dramatically. Citizens Advice can offer you independent advice about this.
We talk about other things you may need to consider, or want to do, after you stop being a carer in the next chapter – Life after caring.
‘You can turn your back on tomorrow and live yesterday.Or you can be happy for tomorrow because of yesterday.’
Extract from ‘Courage’ (anon) suggested by Hilary.
Other ideas
You can see more information about caring for someone with advanced cancer.
If you need to take a break from caring for a patient who is dying, your local hospice may be able to care for them for a period of time. If you prefer, you could ask if the patient could attend the hospice’s day care centre.
Marie Curie nurses can also give you a break and provide free nursing care to cancer patients in their own homes.
Marie Curie Cancer Care and Macmillan produce an informative booklet called End of Life: The Facts, for people in the final stages of life and their carers. You can order it from Marie Curie on 0800 716 146, or you can download it from their website.
Carers UK and Help the Hospices have produced a helpful guide called When caring comes to an end. It has a useful section called ‘When the person you care for has died’. You can get hold of the guide for free by calling 0845 241 0963 or emailing publications@carersuk.org You can also download it from the Carers UK website or see the carers section of the Help the Hospices website.
Macmillan runs a workshop on loss and bereavement. To find out more about how it could help you, call 0207 091 2010 or email workshops@macmillan.org.uk
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I hope this information is helpful.
If you have any advice to share on this topic please let us know. You could comment on this blog.
Take care,
Libby
