End of life care

Coping with a terminal illness

There is no right or wrong way to feel when you hear bad news about your condition. You might feel numb at first, and unable to take in the news, or strangely calm and matter of fact. As time passes, you may experience a range of emotions. It’s normal to feel some or all of the following: 

  • shock
  • fear
  • anger
  • resentment
  • denial
  • helplessness
  • sadness
  • frustration
  • relief
  • acceptance

You may also feel isolated and alone, even if you have family and friends around you.

You might not experience all of these feelings, and if you do they will not necessarily come in any particular order. Whatever you feel, you do not have to go through it alone.

When you hear the news

Hearing that your illness cannot be cured can be a frightening experience. Many people will be unable to take everything in. If you are alone in the consultation, ask if you can bring a relative or friend in to hear everything the doctor has to say. This may involve asking for a follow-up appointment so that someone can be with you. 

Ask the doctor what support is available to you. They may refer you to the palliative care team, which specialises in caring for people who are living with an incurable condition.

Your GP will also know of any local sources of support. Get in touch with your GP to explain what has happened and ask what help is available near you. This may include information services about your illness, financial benefits you may be entitled to, support groups and counselling.

You can use the 'services near you' box at the side of the page to search for services in your area. Or you can use the Find me help service on the Dying Matters website.

Find someone to talk to

Not everybody wants to talk about what they are going through. Some people might not want to talk about it at all at first, and this is normal.

However, a terminal (sometimes called life-limiting) diagnosis can bring up worries and fears, and it can help to talk about these so that they do not start to feel impossible to deal with.

You might want to talk to your partner, family, or friends, or to a doctor, nurse, counsellor, or religious minister.

People close to you will be dealing with their own feelings about your diagnosis. If you or they are finding it hard to talk about it, you might want to talk to someone less close to you. Your doctor or nurse can help you to find a counsellor, or you can search for counselling services in your area.

You may also want to talk to other people who are in a similar situation. This can help if you are feeling alone or confused about how others deal with the news that they are dying.

You can ask your doctor or nurse about local support groups for people who are living with a life-limiting illness, or for people who have the same condition as you. You can also look on the internet. Many specialist charities offer support through local groups, email contact, phone lines and web forums. For example, Macmillan Cancer Care has an online community.

Some people keep a blog or online diary about living with a terminal illness. Dr Kate Granger's blog talks about her life as both a doctor and terminal cancer patient. 

You can find out more about talking to children about your illness.

It can also be useful to have someone to talk to at night time. Liz Bryan, nurse practitioner at St Christopher’s Hospice, London, says: “The night time can be particularly hard, lying in the dark and thinking about what it will be like to die. Make sure you have someone you can ring, but also don’t make yourself lie in the dark. Turn on the light, read a book, recognise that you don’t have to keep on trying to sleep.”

Living with uncertainty

Knowing that you have a life-limiting condition inevitably leaves you living with uncertainty. You will probably have questions to which there are no definite answers, such as how and when your body is going to change, the effect this will have on your independence and your relationships, what will happen at work, and exactly how much time you have left.

Not knowing exactly what is going to happen to you can feel overwhelming and upsetting. It is normal to feel like this, and it is OK to talk to people about how you are feeling.

It might also be helpful to talk about this with others who are in a similar situation, and to hear how they cope with these feelings.

If you think you are depressed

Everyone is unique and you will react in your own way to news that your condition is life-limiting. It is normal to feel emotions such as shock, sadness, anger, and helplessness.

However, for some people, the feeling that they are not able to cope with their situation does not go away, and they feel too low to be able to do any of the things they want to. If this happens to you and these feelings persist, it may be helpful to talk to your doctor.

Medication often helps and counselling or cognitive behavioural therapy (CBT) can make a difference to how well you feel you are coping.

Find out about benefits

You may be entitled to benefits if you are ill and need treatment or care. These include travel costs if you need to go to hospital for treatment, prescription costs and the Personal Independence Payment (PIP). The PIP replaced the Disability Living Allowance in April 2013. Your carers may qualify for benefits too.

You can ask your nurse or doctor to find out what benefits you are entitled to. You can also contact the Citizens Advice Bureau, or use the GOV.UK benefits calculator.

You can find out more about money issues and what you and your carers may qualify for.

Living with your diagnosis

Penny Hansford, director of nursing at St Christopher’s Hospice, offers the following suggestions, which you might find helpful.

One step at a time

What you are dealing with can feel overwhelming, but you may be able to make it feel less so by thinking about it as smaller 'pieces'.

“It’s an old saying, but take one step at a time,” says Penny. “Try to put life into bite-sized chunks, so take one day at a time, or one week at a time.” Decide on some small achievable goals so that you gain confidence. This could be something like putting family photos into an album, or visiting a friend.

You can still think about bigger issues, such as where you would like to receive your care in the future, but don’t feel that you have to tackle everything at once.  

Write down your worries

Some people feel helpless and that everything is out of control. Writing down worries and questions can begin a process of deciding what is important to you and how to tackle it.

Penny says: “Start by thinking about what the important issues are for you, what things you want to do, what your feelings and worries are. Making that a bit more concrete by writing it down can help you put some structure around what may feel unmanageable and chaotic.”

If you wish, you can use what you have written to help you talk about things with your family, friends and carers.

Look after yourself

Try to take some time to do things that you enjoy. This is particularly important when you are feeling tired and weak.

Complementary therapies, such as massage and aromatherapy, may help you feel better. You will probably have many concerns about the people close to you and it will help them if they know that you are looking after yourself. There may be things that you can do together.

If friends and family offer help, try to accept this and give specific examples of support you need and would like. For example, someone might be able to help by taking you shopping, bringing you some meals to put in the freezer, or driving you to appointments.

Healthtalk online has interviews with people talking about their experiences of living with dying, including:

 

Page last reviewed: 11/09/2014

Next review due: 11/09/2016

Comments

The 3 comments posted are personal views. Any information they give has not been checked and may not be accurate.

wrists said on 20 October 2014

everything you see in all the articles regarding terminally ill people assumes everyone has cancer but that isn't the case-my hubby has end stage renal failure-on home dialysis- a heart condition that needs surgery but he was turned down for that as he also has an incurable disease called amyloidosis!! as you can see he has a lot on his plate! there has been talk about putting him onto terminal benefits but so far he has resisted and has continued to work full time as an electrician but he had surgery last week and he is finding it hard-he only got dressed today for the first time since last weds as he had a hospital apt-he is now talking about perhaps giving up work but he is worried he isn't ill enough! or if he does give up work he will also give up the will to live! anyone else had these thoughts? I don't know what to advise him as I still work but only 2 days aweek but I would like him to have some sort of life before he becomes too ill to enjoy retirement-he is only just 60-nobody at any of the clinics we have been to over the past year have ever spoken to us on the subject so who do we speak to to get advise?

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Peter Wicks said on 27 August 2014

I believe that what I am about to write will make a few oncologists cringed with shame. My wife was told that she had terminal cancer and that she should go away and enjoy what life she had left and if she had chemo it would probably end her life sooner rather than later."Rubbish" I said to my self as I listened to this bringer of death scare the whit's out of my wife. That's when I asked this doctor(who is paid by the big pharmaceutical companies to peddle their poison) If he knew about the alternative treatment and cure for cancer that was sweeping the world and this old research and development technician and engineer started to quiz this man of medicine because it was plain to see that he had no PhD to his name and the tile of doctor was purely a curtsy title give to all medical students. So I told him about a substance which was thousands of years old that was curing cancer he was he said was incurable, but like all good dyed in the wool establishment doctors who dare not "think outside of the box" refused even to admit this substance existed and huffed and puffed when I asked him for a prescription for the cure. In the end my wife elected go the alternative way and get our medicine from Europe where there are NO closed minds to other ways of curing cancer.

Peter Wicks the radical poet

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looby24 said on 31 March 2014

I am looking after my terminally ill husband and I have a stomach bug .I have a 48 hr edmegency care ,but dous this class as Emergency care ,I feel awfull and can hardly walk!

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