End of treatment

Support for carers and loved ones

#

There may come a time when your loved one’s healthcare team believe that there are no longer any therapies that will offer them greater benefit than risk of side effects, or they may sadly have passed away.

This information has been prepared to give you some brief guidance and advice for these, understandably, difficult and upsetting times. However we recognise that the emotions and practicalities that you may experience are complex. As such, the information here is just a starting point, and we have also signposted various other support groups so that you can access more help, guidance and advice when you need it.

Not all of the advice below may necessarily apply to you, but we hope that it can provide you with some direction to help you get any support you need.


Grief and bereavement

Grief can be an isolating experience, which some people begin to feel from the moment that they learn a loved one has been diagnosed with cancer. For other people, grief may come later. Often it can feel confusing and overwhelming.

Some people believe that there are defined stages to grief, which we’ve summarised below. However it is important to remember that everybody is different and you may not experience some of these stages, experience the feelings in a different order, or dip in and out of them a few times. Regardless, if you are struggling with feelings of grief, reach out to a loved one or a professional to ask for help and support.

The Five Stages of Grief1

Often in this stage people may feel shocked, or numb, or like the world is meaningless, or overwhelming. These feelings are like a defence mechanism, or nature’s way of letting in as much as you can handle at that time. Gradually the feelings you have been denying may begin to surface.

The emotions and pain you may experience during times of grief can release themselves as anger, helping to anchor you after feelings of denial. You may find that you get angry with other people, or situations, or even things unrelated to the trauma that you are going through. Try to be patient with yourself – anger is just another way of showing that you care, and are feeling loss.

Some people try to make bargains, be it with their God, another higher power, or with themselves. You may have thoughts such as “I will never get angry at my loved one again if you let them live”, or “If only we had done things differently…”. Thoughts such as these can lead to people finding fault in themselves, but it is important to remember that situations leading to grief are often out of your control, and not your fault.

At this stage, many people find that their grief enters their lives at a deeper, personal level. You may feel as though you are in a fog, and want to withdraw from life, and the world around you. Depression caused by grief isn’t necessarily a sign of having developed a mental illness, but if you feel like you are really struggling then consider getting in touch with a doctor or counsellor.

Some people think that this stage is about feeling “all right”. However you aren’t expected to feel that way after the loss of a loved one. Acceptance is more about realising your loved one has passed, and coming to terms with the new reality of life without them. Acceptance can be difficult, as you may want to continue life as it was before your loved one passed, but most people gradually start to adjust or change routines as they become more accustomed to their new reality.

Taking care of yourself

  • Throughout the time you are grieving, it’s important to remember to take care of yourself. Try and make sure that you are eating regular meals, getting some exercise, and rest when you need it
  • Be patient with yourself. Some days will be easier than others, but it will take time to come to terms with your loss
  • Get help if you need it – there may be some local support groups, or bereavement services you can contact
  • Don’t bottle up your feelings – be they happy, sad, contemplative, angry, or if you cry a lot. Recognising your feelings and letting them out is an important release when you are dealing with stress, or an emotional trauma

Your support network

During times like this you may feel like you want to withdraw into yourself, or isolate yourself from the world. Some people do this because they feel depressed and alone, and some may do it because they worry about being a burden on others.

As tempting as this may seem, it’s more important than ever that you make sure you have a support network around you. The support of friends, family and healthcare professionals can relieve some of the daily burdens to help you focus more on your feelings and what is important to you, and they can also support you with more difficult practicalities, like funeral arrangements, etc.

People may also be able to help you out with practical tasks like cooking, child minding or cleaning, or give you a shoulder to cry on, or a hug. You may even have a doctor or a counsellor who can support you, or your loved one’s healthcare team may have already reached out to you to provide you with help and advice.

Remember: people will want to help you, so when you feel you need it, think about accepting their offers or asking for help. It’s also alright to tell people that you need some space for a little while – above all, remember to be honest with them, and yourself.


Dealing with the difficult practicalities of loss

Along with the emotional trauma of losing somebody close to you, there may be practical issues that need attention. Managing these and taking time to look after yourself needs careful balance, so we’ve provided some suggestions to support you:

Funerals and memorial services

  • For many people this can be the most difficult part of losing somebody – it can feel like a very final, and lonely experience. Try to look at the process as a way to celebrate your loved one, their life, and the love they shared with you and your wider friends and family
  • Undertakers or funeral directors are there to support you during this difficult time – they know from helping others how hard it can be to say goodbye to somebody close to you. If there are any aspects of a funeral or service that need your attention, they will help guide you through what needs to be done, and what decisions you need to make
  • Accept help when it is offered – even having a friend or relative with you when at a funeral director’s office, or when registering a death with your local council will give you some support, and somebody to discuss ideas with if you are feeling uncertain
  • If you follow a faith, confide in your spiritual leader – not only about any details of the funeral or memorial service, but also for advice, and emotional or spiritual support
  • A funeral or memorial is an excellent time to gather as many memories of your loved one as possible. Think about asking people to write down a special memory of your loved one in a book or bring a photo, or other memento for you to look back on at a later date

Work and compassionate leave

  • If you are employed, tell your employer as soon as possible about your loss
    • In the UK, there is no legal obligation for an employer to offer either paid or unpaid compassionate leave following a bereavement, but most will either provide it in a contract of employment, or allow leave at their discretion on an ad-hoc basis
    • Your employer should tell you how long they are prepared for you to be away from work, and if your leave will be paid or unpaid during this time
    • Your employer may also refer to your right to take unpaid “time off for dependents”. A dependent is anybody who relies on you for his or her care, to deal with an emergency (including the death of a dependent). You should note however that this legal requirement only covers the time to deal with the emergency, and not time afterward for the traditional time to grieve2 – this would need to be arranged with your employer as compassionate leave
  • If you are self-employed, there are unfortunately no legal entitlements for leave, but you should make any clients you are currently working for aware of your situation early on
    • If you are worried that this will affect your finances, reach out to your doctor, local charity or government’s website to see if they can give you any information about income support or other benefits you might be able to claim during this time

Remembering your loved one

You might want to think about setting up some memorial activities to help you, your friends and relatives remember your loved one. We’ve summarised some ideas below:

  • Create a memory box, and fill it with tokens, photos and stories about special moments
  • Reach out to friends and family (even those you don’t know very well) to see if they can share even more memories and stories with you
  • Plan an event or a trip that has a special memory attached to it for you about your loved one. Use the time to think about happy memories together
  • Find a special place to have a memorial. This doesn’t necessarily need to be a grave site – it could be a plaque, a bench, or even a special tree or viewpoint somewhere that is meaningful to you (check with local councils about installing plaques and benches beforehand)

  1. Kessler D. The Five Stages of Grief. Available from: https://grief.com/the-five-stages-of-grief/. Last accessed August 2019.
  2. Employment Right Act 1996, Part VI. Section 57A. Available from: http://www.legislation.gov.uk/ukpga/1996/18/section/57A. Last accessed August 2019.