Living With Terminal Illness: How To Communicate And Get The Right Support
Terminal illness, life-limiting illness, end-stage disease; it doesn’t matter what name you give it, hearing the news that your life will be cut short is devastating.
There’s no right or wrong way to feel, and you may experience a range of emotions – anger, sadness, resentment, fear, even guilt. Forgive yourself in advance for the days when you don’t handle things as well as you would like. Some days will be better than others.
The purpose of this article is not to tell you how you should feel or how you should act. This article is about communication – how to make the time you have left as easy as possible for you and your loved ones. It’s about getting the right support – working out what you want and need, and then choosing the right people to help with it.
Here are some of the areas we will be covering:
- Who should you tell and when?
- Telling people: what to expect
- Respecting the feelings and needs of your loved ones
- When it’s ok to be selfish
- How to accept offers of help
- Your emotional support network
- Your practical support network
- The importance of communicating
- Making the most of the time you have
We’ve tried to keep this article frank and open which may mean that some of the areas covered are difficult for you to think about. However, planning for end of life can be a positive process, enabling you to share your wishes and prepare for saying goodbye. We hope that you will focus on those positives as we share our thoughts and advice with you.
Just like there is no right or wrong way to feel, there is no right or wrong to who you should tell and when. You might decide you need time to process the news before you talk about it with your partner or children. That’s perfectly ok, but you shouldn’t wait too long before you talk to anyone at all. It doesn’t have to be a family member to begin with; it could be a doctor, counsellor, even a stranger you’ve met online. Talking to someone will help you process the news.
While you might not want to tell your family immediately, don’t leave it too long. The idea of protecting them from the news may seem selfless, but you’re denying them of the chance to be truly there for you before your illness becomes unmanageable. Living with a terminal illness will be difficult, but it can also bring you much closer to the people you love.
Before you tell anyone – family, friends, colleagues – think about what type of person they are so you can prepare for their reaction.
Some people find it hard to hide their emotions. They will probably get visibly upset on hearing the news. It could be a good idea to have someone else with you to help comfort them if you think it will be too hard for you alone.
Other people deal with bad news by getting practical. They might question you about the ins and outs of your diagnosis. They may also start planning things they can do to help you organise your affairs. This can sometimes seem clinical and even insensitive, but it’s just their way of dealing with it.
You may find some people go into denial. They don’t want to know details; they don’t want to talk about it; they just want to carry on as usual. Give them time to process their feelings. If they go weeks in denial, then you might need to take further steps to help them come to terms with it.
Other people will turn to their faith. They will want to pray or meditate or go to their place of worship. Their beliefs might not align with yours, but if it brings them comfort, then view it as a positive.
When it comes to friends and acquaintances, you’ll have some that will really rally round. People who you weren’t previously that close to might go on to be your biggest sources of support. Utilise the people in your network who are happy to help; you don’t have to deal with things alone.
Conversely, you might find that some friends and acquaintances distance themselves from you. Don’t take this personally; they may be struggling to cope with the news; they may be worried about saying or doing the wrong thing. They might genuinely think they have nothing to offer and that the best thing they can do is give you time alone with your family. It’s possible they honestly believe they are doing you a favour by distancing themselves.
Whoever you decide to tell and at whatever stage, prepare yourself for a range of reactions and try to be understanding of other people’s coping strategies.
As we have touched on above, different people will have different coping strategies, and it’s important to be respectful of these.
You might not want to talk about your feelings, but this could be really important for a partner or child. You might not want to think about the practicalities such as writing your will, whereas your children might need to focus on these things. On the other hand, you might be very practical, but find that your partner doesn’t want to discuss your death at all.
Be sensitive to how your closest family members work through their emotions. Would it really hurt you to spend a morning or afternoon sitting down with them and doing things their way? They will be the ones left after you are gone, so try and make things easier for them in the lead up to your death and in coping with their grief afterwards.
You need to think about the feelings of your loved ones, but it’s ok to put yourself first sometimes. You still have a life to live, and it’s up to you how you live it. Don’t feel pressured into doing things you don’t want to and don’t feel like you have to constantly put on a brave face to spare others.
If you need to cry, shout or scream, that’s fine. If you want to forget all about your illness for a day and pretend it doesn’t exist at all, then that’s fine too.
You’ll have some friends who are good listeners, who will let you cry and vent for hours on end without judgement. You’ll have other friends who will help take your mind off things by doing normal activities and not asking you how you’re feeling every five minutes. Learn which people you can turn to for which type of support and lean on them when you need to.
When people find out about your diagnosis, it’s likely that you’ll get several offers of help. Don’t be afraid to take people up on their offers. Most people get a good feeling from helping others and will genuinely be happy to help where they can. A lot of people feel helpless when someone they care about is ill; giving them tasks to do will reduce that feeling.
There will be lots of things you need assistance with throughout your illness. It could be practical tasks like taking you to hospital appointments, or it could be emotional support such as having someone to call late at night when you can’t sleep.
Make lists of the types of activity you need help with and consider who the most appropriate people or person is to help with each task. Who lives nearby who could do your weekly shop for you? Who has a flexible work life who could drive you to appointments in the week?
It’s important to have a support network, so when you get offered help, thank the person and suggest things they could do for you.
Your emotional support network consists of people you can call on to provide emotional support. Sometimes you might want to feel sorry for yourself; other times you might want someone to cheer you up. Think about which of your friends and family members you can call on to:
- Cheer you up
- Take your mind off things
- Call when you can’t sleep
- Vent to without judgement
- Cry on without feeling guilty
- Talk to about your fears
- Take care of you when you’re feeling unwell
- Do normal activities with you without acting like you are made of glass
- Give you a kick up the bum when you’re being unreasonable towards your partner/children/parents
- Force you to face the world again if you sink into hibernation mode for too long
- Sit with you when you just need company but haven’t got the energy to talk or go out
You might have several people for each of these things, and some people might be good at more than one of these things. The important thing is knowing who you can call on if you need them.
Your practical support network is made up of the people who can help you with practical tasks. They might be some of the same people in your emotional support network. They will help you with tasks such as:
- End of life planning and recording your healthcare wishes
- Funeral plans
- Power of attorney
- Getting finances and paperwork in order
- Researching treatments, alternative therapies, support services
- Taking you to and from appointments
- Household chores
- Organising days out
- Writing letters/autobiography/obituary
Practical tasks can be overwhelming and difficult to deal with, but there’s a lot you can do now to make life easier for your loved ones later down the line.
Break big tasks into smaller goals. You don’t have to plan every detail of your funeral in one day; perhaps you simply start with deciding whether you want a burial or a cremation. You don’t have to sort through all your paperwork in one go; maybe you start by listing which suppliers currently provide your gas, electric and water. Having people who can help with these tasks will take a lot of pressure off you and your immediate family, making it all a bit less daunting.
Good communication is essential in every aspect of life, and this doesn’t change when you are diagnosed with a terminal illness.
Your partner, children or parents will have a lot of concerns about you. Sometimes they will feel completely helpless; sometimes they will feel awkward or on edge; sometimes they will feel angry, sad or guilty. Recognise that this is a difficult time for them too and they need your support as much as you need theirs.
Communicating honestly and openly will make life easier for you and for them.
Talk to them about how you feel. If you are having a tough day; let them know. It’s ok to admit that you are feeling low sometimes – you have every right to be angry or sad about your illness. Ask them to be honest about their bad days too.
If you find it difficult to talk about your feelings, then tell them that, and equally, don’t push them to discuss your illness if it is too difficult for them.
If they try and push you to do things you don’t feel up to, then don’t just go along with it to please them; explain why you have reservations. If you want to do some things that are out of the ordinary or to stop doing things you did before, be honest about your reasons.
Learn to call on your extended network, rather than depending on just your immediate family. If you have been relying heavily on one particular family member, arrange a day out with a friend so your family member can have a break. You and your family are a team, so work together. Don’t try and protect each other by hiding how you feel or putting on a brave face. This will use up too much of your energy and theirs. Respect each other’s way of dealing with things and find compromises that work.
You might have less time left than you hoped you would, but you can still make that time count.
You don’t have to fill every second with bucket list tasks, but equally, life doesn’t have to revolve around your diagnosis.
There will be moments of sadness, but you can make happy memories for your loved ones too. Find the balance between dealing with tough stuff effectively and living your life to the full while you can.
Focus on the positives past and present. Reminisce about the good times you’ve had together and have things to look forward to – a day out with your partner, a friend’s upcoming wedding, a child’s birthday celebration.
Here are some suggestions for positive things you can do with others or by yourself:
- Make memory books or photo albums
- Create a bucket list
- Write letters to loved ones for future special occasions when you can’t physically be there
- Write a memoir, some poetry or a novel
- Go out for your favourite meal
- Have a family holiday or short break together for a change of scenery
- Do something for charity
- Organise a party
- Take up a new hobby or learn a new skill
- Tell family members how much you love them and all the things about them that make you proud
Of course, if you don’t want to do any of these things, then that’s fine too, and you might have your own ideas about things you can do. As we said at the start of this article, there is no right or wrong way to act. Do bear in mind though, that your loved ones will still be here after you have gone, and your actions now will affect them too.
We hope that this article has given you some food for thought. Whether your diagnosis is brand new or you’ve had time to come to terms with it, we want you to know that you aren’t alone.
Lean on your friends and family where you can, and take advantage of professional support too. There are lots of local charities, support groups and counselling services that offer emotional and practical support. We’ve compiled a list of organisations that offer practical advice here.
Gooding Funeral Services is proud to be a partner of the local Dying Matters organisation - The Dying Matters (Leeds) Partnership. Dying Matters is a coalition of 32,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.
If you’d like any advice, support or guidance dealing with your terminal diagnosis, get in touch. We’d be happy to help you find support in your area.