As your health deteriorates there will come a time when you have to make difficult decisions and you may struggle to accept and adapt to the changes going on in your life. This can be a difficult time for your family and carers too. In this section of the website you will find more information about the support that is available to help you.
Dealing with change
There is no doubt that having a life limiting illness changes your life and has a massive impact on the lives of family members and carers. As your health deteriorates you may find your role within the family changes and you may have to cope with giving up work, loss of independence and financial worries amongst a lot of other things.
There are often practical issues to deal with and major decisions to make. Here are a few examples – you can probably think of more:
- Do I need to move my bed downstairs?
- Who can take the dog out?
- How will I manage the shopping?
- My son/daughter has asked me to move in with them – should I go?
- Should I move into a care home or nursing home?
Often it's the emotional impact of approaching the end of your life that is the most difficult to deal with. You will probably experience a wide range of emotions including shock, disbelief, denial, fear, anger, grief, anxiety, depression, hopelessness, despair, sadness and guilt. You may be surprised at how quickly your feelings can change – from day to day, hour to hour and even minute to minute. All these feelings can be normal reactions to what is happening to you.
Coping with your feelings
Simply talking about your feelings can be really helpful. It sounds easy but it can be difficult to get the conversation started especially if the person you most want to talk to is very close to you. Here are some tips to consider:
- There is no right or wrong way to talk about dying and how you feel about it
- Choose the right time – no one wants to talk about difficult issues if they are rushed
- Choose the right place – go with what feels comfortable for you whether this is while out for a walk, in a café, in the corner of a crowded room or quietly at home
- Be honest about how you feel – you don't need to pretend to be cheerful when you're not
Family, friends and carers
Just as you have strong feelings about your illness and what is happening to you, your family, friends and carers will too and may try to hide their feelings or behave in a way you do not expect. They may not want to upset you and will act as if nothing is bothering them. They may even think that by being cheerful, your illness will go away. They may also:
- want to blame someone for your illness
- change the subject when someone talks about your illness
- avoid talking to you about your illness
- make jokes abut your illness
- pretend to be cheerful all the time
- stay away from you or keep their visits short
Health professionals are available to help you and your family to cope with your feelings. It is important for you to talk to them about how you are feeling so they can help you to find the support you need.
Sources of support
There are many ways in which you can find emotional support. From support groups to books and chatrooms the following list provides you with information about the types of support out there. Just click on the orange links to find out more about the following sources of support.
Health Care Professionals
You can talk to any of the health care professionals involved in you care.
They will help you find the support you need.
- your GP
- your hospital specialist doctor or nurse
- district nurse
- any of the specialist nurses who may be visiting you at home e.g. Macmillan nurse, specialist palliative care community nurse
- your social worker
- your faith leader
Counselling and Support Groups
There are also trained counsellors and support groups which can offer you support.
The British Association for Counselling and Psychotherapy (BACP)
This website provides details of local counsellors, including those who have specialised training around cancer or other illnesses and those who may be able to provide free or low cost counselling or offer concessions.
Macmillan Cancer Support
This website offers emotional support online or via a helpline on 0808 808 00 00.
You can also find information about other local organisations and support groups.
Your District Nurse should be able to provide information about local support groups for people who have cancer or other diseases, or for carers.
'Dying to Know' and other books are available from the Dying Matters website.
Look Good Feel Better
Look Good Feel Better is a cancer support charity that helps women manage the visible side effects of cancer treatment offering workshops in beauty and skincare.
Some hospices offer art therapy sessions to help people express their feelings through paintings, sketches and other art forms.
If I Should Die
The If I Should Die website has a section about terminal illness, with support and advice for people who have been diagnosed with a terminal illness and for those who want to support them.
Chat Rooms are a great place to ask for advice, share information, join in discussions and feel supported.
The Alzheimer's Society, talking point offers an online discussion forum for people with dementia and their carers.
The Cancer Buddies Network offers an online support network.
Macmillan Cancer Support offers an online community for people affected by cancer.
The Multiple Sclerosis Society offers discussion boards for patients and carers on various topics.
OncoChat provides a chatroom that offers support for cancer patients, their families and their friends.
Support for children and teenagers with cancer
Here are a collection of resources and websites which are developed to provide support and information for children and teenagers who have cancer.
CLICSargent is the UK's leading children's cancer charity and offers support and information for children and young people with cancer and their families. Their website includes an online community, message boards and lots of information about childhood cancer.
The Teenage Cancer Trust
The Teenage Cancer Trust website hosts a support network which focuses on the needs of teenagers and young adults with cancer.
Marie Curie Cancer Care
Marie Curie Cancer Care provides in-patient, out patient and home care to adults in the UK but can help children and teenagers if they need bereavement care or counselling.
Benefits and finances
Financial concerns can add to the stress of having a life limiting illness:
- You may have a job but now you're too ill to go to work
- You may be self employed and are struggling to keep the business going
- You may be retired and being ill makes it harder to make ends meet
- Your income has reduced and now you may not be able to pay your rent or mortgage or other bills
- Carers may need to reduce their working hours or even give up work altogether
- You may have additional costs such as increased heating bills, hospital parking charges, extra fuel costs and prescription charges.
Planning and seeking advice early can often stop difficulties arising later. If you are working you should:
- Talk to your employer about sick notes, sick pay, how long it is paid for, your entitlements as an employee
- Talk to your work occupational health department if they have one
- Talk to your trade union welfare adviser if you have one
Whatever your age or financial situation you may be entitled to certain benefits.
Not all benefits are means tested and some benefits automatically qualify you for further entitlements.
So even if you have a good salary or pension and have some savings it might still be worthwhile checking what you are entitled to.
You may be entitled to free prescriptions.
Navigating the benefits system can be confusing and complicated but try not to be put off. It's worth getting advice.
Sources of advice:
- Your social worker – ask for a referral from your GP, hospital clinic or district nurse if you do not already have one
- Citizen's Advice Bureau
- Your local County Council Social Care Services department
Patients on some benefits can also claim back the cost of their travel and parking for their clinic appointment. Please ask your clinic nurse or staff in the hospital general office about where to get this information.
Some hospitals have made provision for patients undergoing certain treatments (usually radiotherapy) so they can access free parking and a parking place nearer to the unit where they will receive treatment. Where free parking is not offered there is sometimes the option of purchasing a week's parking at a reduced cost. Again, please ask your clinic nurse or general office about this.
You may also want to consider contacting your local Social Services Department as you may qualify for a "Blue Badge" which will make parking easier for you when you are out and about. Their address will be in the phone book or on the internet.
Carers may also be eligible for benefits.
You can find helpful information about benefits for both patients and carers from Directgov public services website. There is a section on Benefits and Financial Support including a Beginners Guide to Benefits.