Caring for someone with a terminal illness

Sarah: With most carers it’s -, and people's conditions, it often creeps up on.. doesn't it? You don't necessarily choose to take on the care of someone. It's something that happens and comes to you.

Una: I think it's crept up a bit by bit, you know, as you add on more and more tasks that you do.

Roger: I saw my job as taking care of Teresa’s needs. Being her representative, being her mouthpiece, as well as her partner and everything else.

Janet: You know I felt we actually drew close together because we began to really talk about some things that we've maybe not bothered to talk about before because it didn't seem to be important. But we began to talk much more about what we meant to each other and the things that we’d experienced, that we really enjoyed together. So that was a positive thing.

Cassie: All of my needs and what I wanted and what I needed during the time that he was ill, during sort of nine months, eight, nine months, just went -, completely went out the window. I stopped caring about me and it was just caring for my dad. That was it. That's all that mattered.

Welcome to the section dealing with carers for those with a terminal illness. I am Edwina Currie and I'm here to tell you a little bit about what you are about to see. What we've done is we've interviewed more than 40 carers for people with terminal illness, and we’ve got more than 300 clips for you to have a look at. We hope that the experiences that you are about to see will help you in the judgments and the choices that you make about the person you are caring for, whether it's a husband or wife, whether it's an elderly relative, whether it's a friend or neighbour, whether it's child even.

We hope that it helps you find a guide through all the systems and the complexities of the ways in which you’re going to be offered help, and enables you to make good choices for yourself and the person that you are caring for. The other objective is to give you some reassurance,  you are not on your own. Other people have experienced what you are experiencing now, other people have felt what you feel. Whether it's fear, whether it's guilt, whether it's anxiety, whether it's just a sense of helplessness that you don't know enough about what you're trying to do. Don't worry, have a look at these clips and be reassured that there's a lot of help around and a great deal of advice, and many other people have been through what you as a carer are going through, and they come out the other end feeling content.

The site is also for health professionals because you may have been trained to look after a patient and you may know everything about disease and illness, but do you know about the carers, do you know about what they feel? Do you know about the pressure that's put on them? Do you know about the assumptions that are made about carers always being there when the health professionals aren’t? And do you realise that actually we are all part of a great big interface between professionals, the sick person, and those other people who are looking after him or her. And of course, if as a health professional, you become a carer yourself, you're going to find it very different. And we hope that you will find a great deal that benefits you as you look at these clips.

My personal history is that, thank goodness, I’ve never been a carer myself but I'm married to somebody who was a carer. When I met my husband, John, he was recently widowed. His wife, Frances, had died in a Marie Curie hospice, and he had helped look after her for 18 months. I know from knowing him and the other members of the family that the experience that they had in which they were helped such a lot, the choices they had to make, the pressures that they recognized on them and the way in which they coped with them, and the fact that she had a good passing, all were an enormous help afterwards in coping with those feelings of guilt and inadequacy that everybody feels. And which you will be able to see discussed on this website. I know that the outcome was that that carer was able to surface one day and return to normal life.

I hope, therefore that you find everything on this website of assistance to you. I hope that your caring goes well. And I hope that the end, when it comes, is a good one.