If you have discovered that you have an incurable illness that has limited your life expectancy to a short space of time then you will likely be very distressed. There is no right or wrong way to feel when you find out and you may experience a variety of different emotions along the journey. When you first find out you may feel angry, scared and helpless or may have a period of denial where you find it hard to accept the reality of it all. There may then be periods where you feel anger and resentment at what has happened and there may come a time when you feel relief and accept what has happened and will happen in the future. Everyone is different though and it is entirely normal to feel all, some or none of these emotions.
Who to inform and how to tell them
It’s important that you have people around you who are aware of your situation and can help you when you need it, both physically and emotionally. It can also help to bring home the reality of what is happening by explaining the diagnosis to others. For some people it might be their families and partners that they share the news with, or for others it might be close friends, employers or neighbours. You should also consult with your GP as to what options are available to you in terms of support groups and counselling. If you are religious you may want to seek support from your local religious building or community.
Breaking the news
You have no obligation to tell anyone you don’t want to. Some people will choose to share the news publically with friends, family and co-workers while others will decide to keep things more private. There is no right or wrong choice but it is important that you have support. Once you have worked out who you will need to inform it may be worth writing down their names in a list so that you can work through it methodically and make sure you don’t miss anyone important.
Telling someone that you are going to die is difficult to do and finding the right words can be agonising, but know that telling your partner, loved one, or friend will allow them the chance to support you and allow them a chance to say goodbye. Try to be straight forward with your words, allow them to ask questions and expect tears, anger or maybe just silence as they may not know what to say. They might also have lots of questions about your illness which they will want you to explain for them. It’s not unusual to become tired of explaining the situation, which is why sometimes it’s best to suggest politely that they look online to find out more.
You might also find that your loved ones have differing opinions to you. For example, they might question your choices of treatment for instance or perhaps encourage you to make decisions that you don’t want to make such as having a religious funeral if you aren’t religious. At times like these it’s best to say that you are tired of talking about the topic and tactfully change the conversation.
It’s only natural that the people close to you will want to know how you are progressing, but you may find that it becomes tiring speaking to so many people about the same topic of conversation. It can be even more overwhelming if you own social media accounts where you can also be contacted. There are free online services such as Caring Bridge which exist that you can use to keep friends and family updated on your progress. They are private which means only the people you invite through email are able to see your updates which can also be sent out via Facebook, Twitter and by text to specific loved ones.
What to do about work
It’s important that if you are employed that you speak to your employer and let them know about your diagnosis. Don’t be worried about losing your job as under UK law you will most likely be protected which means that your employer cannot discharge you or make you redundant. They will also need to make reasonable adjustments to accommodate your need. It’s important to consider the practicalities of remaining at work and a better solution might be to spend less time there, maybe with some home working. Your employer should not inform your colleagues of your diagnosis without your permission but if you want to tell them then that is your choice. You might feel that they ought to know, but you might equally want to keep some normality in your routine by carrying on as normal. There may come a time where you are simply too unwell to continue at work, and you may have to give up your job. This is why you should speak either to your employer or to the Equality Advisory Support Service for advice on your work benefits such as Statutory Sick Pay, life assurance, critical illness cover, shareholder and pension rights.
Choosing your care
As your illness develops you may need to consider how best to be cared for. Whether that means being cared for at home, in a hospice, in hospital, in a nursing home, care home or somewhere else, you should discuss the practicalities and implications of your decision with those close to you as well as your GP who will be able to advise you on what services are available in your area and what steps to take to move forward.
This is also a good opportunity to think about your final days and where you would like to spend them. In some cases it’s possible to be transferred home from a hospice in your final days so that you can be in a familiar environment.
Power of Attorney
There may come a time when your illness means that you are unable to make certain decisions for yourself. This is why many people with terminal illnesses decide to give someone close to them ‘Power of Attorney’ which allows them to make legal decisions on your behalf. They can then ensure that any decisions are made with your best interests and your wishes in mind. Setting up Power of Attorney also allows for a loved one to make decisions over your financial and legal matters. It should be prepared by a legal professional such as a solicitor or with help from the Citizens Advice Bureau.
Making a Will
If you don’t already have a will then you should find time to have one prepared. If you die without a will then you risk your assets being divided according to the letter of the law rather than by your own wishes. While you might assume that this would result in your assets being passed to your spouse, it isn’t always that straight forward so a will is needed to ensure that your wishes are followed.
As well as finding a solicitor to draw up your will, you need to find an executor to administer your will when you are gone – this could be a solicitor or a friend.
Your will covers what you want to happen to your estate which includes your home, savings, insurances, pension, national savings, bonds, investments, vehicles, jewellery, furniture and your debts. It may also include any wishes you have for leaving money to charity.
Importantly if you care for any children who are under the age of 16 then you should make arrangements for them when you die. This is usually done by specifying a legal guardian in your will, as well as an alternate guardian in case your first choice is unable or unwilling to accept responsibility of the child. To make your decision you should think carefully about who would be most suitable. Which of your relatives or close friends is stable emotionally, financially and in good physical health and who does your child have a good relationship with already. You may also want to consider location, how many other children they have and the values and attitudes of that person before having a conversation and naming them in your will.
If you have pets then you may also want to include them in your will so that they are taken care of when you go. You can name a beneficiary and can make financial arrangements so that the upkeep costs are covered for your pet if you wish to do so. Click here to find out more about including your pet in your will.
Click here to find out more about wills and estates: https://www.cravens-funerals.com/a-guide-to-wills-and-estates/.
Planning your funeral
Another area that you will need to handle is your funeral planning, if you haven’t already made arrangements.
Planning your funeral in advance means that your family is left with less to do when you die and more time and space to grieve, knowing that your wishes are being taken care of by the funeral director. You will need to make decisions about where you would like your final resting place to be. Many people choose to be cremated, while others are buried, some have bio-degradable coffins and are buried in forests and others donate their bodies to medical research for the benefit of others. You may also wish to make arrangements regarding the style of the funeral. Perhaps you would like a small private ceremony in a church, or maybe something bigger and more extravagant. There also decisions over the smaller details of your funeral such as your choice of pall bearers, music and flowers among other things. Preparing a blueprint in advance for your funeral will lessen the burden on your family when you are gone.
One of the biggest regrets of people left behind after losing a loved one to a terminal illness is that they didn’t learn more about their loved ones – particularly with young children. One of the best ways that you can give future generations an insight into your life story, your values, your triumphs and your defeats is to write a legacy letter or record a video which shows them who you are. If you don’t have children then this could be a farewell note or video for your loved ones to remember you by. This can be a cathartic experience that can also help you to gain perspective on what is happening and what has already happened. It will also be something that your family will treasure for years afterwards. Click here to read more about legacy letters.
If you have been diagnosed with a terminal illness and would like help planning your funeral please contact Cravens Funerals. Our compassionate and professional team have years of experience creating funerals that are completely unique to the individual. For help and advice please contact us on 0151 228 3900, or leave us a message through our contact us page by clicking here.Download article as a PDF