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Adult Carers

The person I’m
caring for is dying

Caring for a loved one with dementia or a family member who has a diagnosis of a terminal illness is emotionally tough. Sometimes, it can feel like you’ve started grieving even before the person you’re caring for has died. This is called ‘anticipatory grief’ and it’s just like the experience of grief that people get after a loved one dies. Some days might feel very hard, and other days might feel almost ‘normal’.  You might feel you’re on a rollercoaster of emotions.

Dealing with Death

The charity, Cruse, says that some of the things you may be feeling could include:

  • Anxiety: You may be worried about how you’ll cope without your loved one, or maybe you’re worried about them suffering and how they might change.
  • Anger: You may feel the situation is unfair – or you may feel angry with your loved one for leaving you. You may also have to cope with their
  • Loneliness: You might feel that no one understands what you’re going through and that you’re entirely alone with your caring responsibilities.
  • Guilt: You may feel guilty you can’t do enough to help. You might also find yourself wishing that your loved one was free of pain, or at peace. You may experience ‘survivor’s guilt’ because you are able to continue with your life while they can’t.
  • Exhaustion: You may be exhausted from your caring responsibilities, but also because you’re not sleeping well at night due to worry.

Some people may also experience physical problems just before someone close to them dies after a long period of illness. You might suffer from insomnia or tummy upsets.

It can also be very difficult if you have to prepare a child or young person for the news that someone they’re close to (a parent or grandparent) is very sick and is not going to get better.

Action you can take right now


Difficult as it may be, if you’re looking after someone who is dying, you need to find ways of supporting yourself too. Cruse Bereavement Care and Marie Curie offer the following suggestions:

  • Allow yourself to grieve: Don’t be afraid of expressing your pain and giving yourself space to grieve. You may find it helpful to talk to a friend or another loved one. Or you could try writing down your thoughts and feelings.
  • Take care of yourself: Look after yourself by exercising, eating well and getting plenty of rest. Try to take time out to do some things that you enjoy, that will help you relax. Phone a friend for a chat, read a book, cook a nice meal, have a bath, breathe deeply, reassure yourself that you will be OK.
  • Be kind to yourself: You have a lot on your plate. Be realistic about what you can do – practically and emotionally. Ask friends and family for help.
  • Spend time with your loved one in ways that are meaningful to you both: Perhaps now is the time to have the conversations you’ve been avoiding. What is it you would like to say to your loved one? Perhaps think about what you might regret not having said while you had the chance. Tears are ok.
  • Take things one day at a time: Focus on today, rather than worrying about tomorrow or the future. Try practising mindfulness; this can help.

More Information

Read

 

  • What is anticipatory grief? Marie Curie – Discusses the feelings and thoughts that someone may have when a loved one has received a terminal diagnosis.
  • Anticipatory grief, Cruse Bereavement Support – Offers gentle, practical suggestions for how to support yourself when you’re caring for someone who is dying.
  • Caring for someone with a terminal illness, Marie Curie – A range of information and resources to support you in your role as carer.
  • When someone dies. Practical and emotional help at a difficult time (pdf), Marie Curie – This booklet provides and overview of the practical and emotional issues that you may face when the person you care for dies

If there are children or young people in your household, you may be interested in reading advice about how to prepare them for the death of a parent, sibling, grandparent or other loved one. These two websites may help:

Listen

 

  • We need to talk about death, Joan Bakewell, BBC Sounds – Nine podcasts (each 43 minutes) exploring the choices open to us and confronting the questions we fear the most.
  • The Vigil, BBC Sounds (28 minutes) – A programme in which people talk frankly about their experiences of watching an elderly parent die.
  • Dying Matters Podcast, Hospice UK – 16 episodes covering a wide range of topics related to death and dying.
  • More to dying than meets the eye. Martha Atkins, TEDxSanAntonio 2013 – A TED talk by a researcher who studies death and dying. The topic of her talk is deathbed phenomena (patients seeing long-deceased loved ones or angelic beings, or hearing music or comforting voices).

Video

 

 

  • What to expect at the end of life, Marie Curie (9 minutes) – A nurse describes the changes that you might notice in a person’s last weeks, days and hours of life, and three individuals talk about their experiences of looking after their loved ones during this time.

Where to get more help

Cruse has a free phoneline for people who are grieving or experiencing anticipatory grief.

The Cruse Helpline: 0808 808 1677, opening hours:

  • Monday: 9.30am-5pm
  • Tuesday: 9.30am-8pm
  • Wednesday: 9.30am-8pm
  • Thursday: 9.30am-8pm
  • Friday: 9.30am-5pm
  • Saturday: 10am-2pm
  • Sunday: 10am-2pm

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