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Information for family, friends and carers at the end of life

Looking after someone with pancreatic cancer who is nearing the end of their life can feel overwhelming. Knowing where to get help and information can take some of the pressure off and can help you make the most of the time you have left with your loved one.

Support for you

Being told that your family member is nearing the end of their life is distressing and it’s normal to feel a range of emotions. You may take comfort from being able to care for them. Or you may be struggling to come to terms with this new situation. You may not live with your family member, or may be juggling their care with other responsibilities, such as work or children.

You may want lots of information about what is happening, or you may just be focusing on caring for them. Finding out what to expect can help you to feel more in control. You can speak to the doctors and nurses, either with or without your family member present, with their permission. We have information about some of the common symptoms  people with pancreatic cancer get in the last few months and how these are managed. We also have information about the symptoms they may get towards the end.

Our specialist nurses on our free Support Line support families and carers as well as people with pancreatic cancer. You can ask them any questions you have, as well as talking through your worries.

You may find counselling helpful. Some carers whose family members have died have said that, looking back, they think that starting counselling earlier would have helped them cope with their grief.

If you feel you need a break, you may be able to get some respite care. This is temporary care to give families and carers a break. Carers Trust has information about how to access respite care.

Read more about the support available for family members.

“I was offered free counselling. This was an excellent service and has really helped me.”

“We had our daughter, my parents, our son and his partner all living together before our daughter died. This served as a great support network for each other. It also meant we had the flexibility of someone always being with our daughter and for the others to get some time out.”

Caring for your loved one

The demands on you can increase quite quickly in the last few weeks or days, especially if you are looking after someone at home. You may need to do more and more for them, including washing and personal care, giving medicines, making sure they are comfortable and helping them with eating and drinking. Read more about getting medical and practical support when you are caring for someone at home.

Ask the doctor or nurse for details of who to call if you need help or advice, including at night or at weekends. Keep these somewhere you can get to them quickly.

When to get medical help

Contact the GP or nurse if:

  • treatment is no longer keeping symptoms under control
  • you are finding it hard to give medicines to your family member
  • there’s anything you are unsure or concerned about
  • you are struggling and finding it difficult to cope.

And contact them if your family member:

  • is finding it difficult to swallow medication
  • has any new or worsening symptoms
  • seems uncomfortable
  • isn’t emptying their bladder or bowel
  • has fallen.

“Keep a list of medication and other important information for out of hours GP visits, as it means this is close to hand when needed.”

Spending time together

The person you are caring for may want relatives, children or pets to be with them in the last weeks of their life. This can be comforting for everyone. If your family member is staying in a hospital or hospice, you can ask whether relatives can stay overnight or if pets are allowed to visit

If your family member would like some time alone with their partner, they could ask their nurses if this is possible, especially if they are in a hospice or hospital. Many people want time to be close and intimate in private and the healthcare team will do all they can to help.

There may be things you’d like to say to your family member while they are still well enough. You might want to talk about their hopes and wishes, or share memories. You may want to talk about practical things like financial issues, their will, or what they want to happen after they die. Or you may just want some quiet time together to say goodbye. Sometimes, people can put things off or feel that it’s too late to start these conversations. But it can be helpful and reassuring for everyone to talk about these things early on. Read more about talking about dying.

“The hospice where my mother was staying allowed pets. There were often dogs around that had gone in to visit.”

“I had no idea how to express my feelings to my dad. I was too busy staying positive and telling him all sorts of happy things we had done together rather than expressing to him how lost I would be without him.”

“My friend regretted not having sat down with her dad and gone through what he wanted to do with things like accounts and paperwork when he was well enough.”

Questions to ask

  • What can I do to support my family member or friend?
  • What help can I get with caring for my relative?
  • Will someone tell me when the person I’m caring for is close to dying?

More information for families

  • Healthtalk have videos of people talking about their experiences of looking after someone at the end of life in the Pancreatic cancer: End of life and professional care section of their website.
  • Carers UK has information on getting care and support. This includes information on planning emergency care, in case you are not able to care for your family member for any reason.
  • Macmillan Cancer Support and Marie Curie’s booklet, End of life: a guide, has information on what to expect in the last few weeks and days of life.
  • Marie Curie’s booklet, When someone dies, has information on what to do after someone has died, coping with grief, registering the death, arranging a funeral and wills.
  • Macmillan Cancer Support has information on emotional support in their booklet, After someone dies: coping with bereavement.

Read about talking about dying

Find out about the signs that the end of life may be near

Read about what happens when someone dies and what you need to do afterwards

Read about coping with loss

Information Standard

Published March 2018

Review date March 2020

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