Terminal Illness

Terminal & Life-Threatening Illness

Terminal and Life-Threatening Illness

Many people learn that they are suffering from a terminal or life-threatening illness from a doctor, at a stage when they may still feel only a little unwell and the idea that they may be going to die is completely unexpected. Most of us remain completely unprepared for our own deaths and the shock of having to confront it, particularly if you are younger, maybe with a dependent family, leads to a turmoil of emotions and feelings.

Everyone has to find their own way of coping and whilst everyone handles things in different ways, the reactions and range of emotions and feelings of most people can follow a fairly typical path. By understanding and acknowledging these wide ranging emotions, it can help the sufferer, their carers and friends and family to cope with the situation. It also gives an opportunity, however painful to plan, prepare and say goodbye. 

1. Shock and Disbelief Like a bereavement, the first reaction is usually one of disbelief - the feeling that it is all some terrible dream. This is a very normal response for both the person who is ill and those closest to them and may last for several days or even longer. 

2. Denial The shock of the initial diagnosis usually gives way to denial for both the person who is ill and those closest to them. They may try and get on with their lives and convince themselves that nothing is wrong. This period also helps to give time to come to terms with what is happening and cope with the range of emotions they will be feeling. Again, this phase may last days, week or months and occasionally people may refuse to accept the situation to the very end. 

3. Anger and Grief Acceptance of the diagnosis and the situation may introduce feelings of anger, sometimes directed at the doctor giving the bad news or the people providing daily care. There may also be a sense of grief for what is being lost - the healthy, happy years that are past and the lost years of the future, particularly when people are younger and may have young children The carer may also experience these emotions, sometimes tinged with guilt and even relief that they are not the one with the illness.. 

4. FearMost people have a natural fear of death, as well as fear of the pain and symptoms of the illness they have been diagnosed with. In addition, there will be fears about what will happen to partners and family after their death, particularly if dependent children are involved. People with a terminal illness, as well as often their carers, need someone to talk to about their feelings and fears. Towards the end of the illness, some people are able to come to terms with their own death and may be able to make positive plans, such as what type of funeral they would like. Others never reach this sort of acceptance. 

Helping People with Terminal Illness

The diagnosis of a terminal illness creates great feelings of powerlessness and lack of control. There are a number of positive ways that can be taken to help and support the terminally ill person and their carer, which will help increase the feeling of taking control. The following ideas have been adapted from books by Dr Robert Buckman 'I Don't Know What to Say' and 'Caring For Someone Who Is Dying' by Penny Mares. 

• Accept your relatives feelings and be prepared for them to want to cover the same ground again and again. There may also be sharp swings in mood and outlook which is a reflection of part of the process of coming to terms with what is happening. 
• Acknowledge and recognise your own feelings. Try and sort out the feelings that are helpful from the ones that are not so helpful. 
• Encourage your relative/friend to talk about their feelings and try to be open and honest about your own. You may find it hard to know what to say - most people do - but just showing that you want to listen and understand is a way of giving support. 
• If you find it very difficult to talk openly to each other, encourage your relative to find someone she can open up to - perhaps another member of the family, a friend, or a doctor or nurse. 
• Encourage your relative to draw on the strength of her own past experience, to think back to difficult and threatening situations that they have coped with and to use this strength to face the illness. 
• Work out the most practical way in which you can help. Avoid the temptation to rush in and take over with help that you can't keep up in the long term. 
• Let your relative make the decisions, don't make them for him or her. Find out what they want to do and let them take the lead in deciding what support they want. 
• Being there may be more important than doing things. Rushing around may help you to feel better but your relative might rather have your company for a couple of hours. 
• Get more information. People who are under a great deal of stress find it very difficult to take in information. You can help your relative understand their illness, ask questions when they want to know more and make informed decisions about treatment or care. 
• Try to help the carer, by making sure they don't become isolated and that they have access to and accept the help that is available. 

Some Thoughts For Positive Action From People Facing Terminal Illness 

1. Establish some goals to help yourself achieve something each week 2. Plan some things to look forward to in the longer as well as shorter term 3. If you haven't done so already, make a will and arrange your financial affairs 4. Discuss any worries you may have about pain and symptom control with your medical carers at an early stage.

5. Have a look at our page on Living Funerals, to see if this is something worth considering.

Have a look on a very helpful website we have recently come acrosswww.terminalillness.co.uk for further practical information.

The CarerTerminal and life-threatening illness means that the carer may have to take on many of the roles and responsibilities that the ill person an no longer manage alone, such as cooking or caring for children. Both parties may find this frustrating and upsetting, as well as the increasing dependence of the ill person. The main carer may also have less time to spend with other members of the family, and other family members may have to take on additional responsibilities such as chores and helping in the home. 

Coping with conditions such as incontinence can also be difficult for both the carer and ill person and the illness may also cause loss of physical or mental faculties and alter behaviour or personality. 

Carers may begin to feel worn down by the daily demands and feelings of frustration and resentment are very common. The extra responsibilities placed on the whole family can put a huge strain on the whole family. Contact www.carersuk.org for support.

As the illness progresses, the ill person is likely to become more dependent on other people for the help and care that they need. 

• Look after yourself and your own health. Try to get enough sleep and rest and talk to your GP or nurse about getting enough support and breaks from caring. 
• Try to make some regular time for yourselves as a family, away from the person you care for. Try to talk openly about the situation and everyone's feelings. 
• Be flexible and be prepared to change your plans. It may be necessary to get more help with the caring than you had originally planned and this should not be seen as a failure. 
• Think ahead and plan for the time when you may not be able to care for your relative at home. 

Care in the CommunityProvision under Care in the Community may differ greatly from area to area, and may also depend on how supportive and informed your local GP and social worker is. Anyone who needs care can ask for an assessment from their local social services department. A social worker or 'care manager' will come to assess your needs and work out a basic 'Care Plan'. This should take account of personal and physical needs in areas such as washing, dressing and food preparation, as well as aids needed such as wheelchairs and ramps. The needs of the carer should also be assessed, such as breaks through respite care. 

The local authority will make a charge for the care, mostly through a contribution from additional benefits such as Disability Living or Attendance Allowance. 

The Care Plan will need to be reviewed from time to time, depending on changed needs 

Get help and advice from your GP as well as from your local Carers Centre. Contact the Carers National Association (see charities and counselling page for details), which should also be able to give you information about other charities and grant-giving bodies which may also be able to help. 

Benefits and Allowances AvailableThe most common benefits available which can be claimed through the Benefits Agency are; 

Disability Living Allowance (DLA) - tax free benefit for those between the ages of 5 and 65 who have difficulty or need help getting around. It is not means tested and does not require the payment of National Insurance contributions. 

Attendance Allowance (AA) - a similar benefit for those aged over 65. 

Constant Attendance Allowance - for those who also receive either an Industrial Injuries Benefit or a War Pension. 

Incapacity Benefit - For those who are terminally ill, of working age and who have paid National Insurance contribution. They should receive a low rate of non-taxable Incapacity Benefit for the first 28 weeks and thereafter a taxable higher rate. 

Severe Disablement Allowance (SDA) - a similar benefit for those between the ages of 16 and 65 that does not depend on having worked or paid National Insurance contributions. 

Invalid Care Allowance (ICA) - can be claimed by carers between the ages of 16 and 65 years of age, who are not earning more than a certain amount each week, after expenses (including National Insurance and tax) and are not in full-time education. The carer must be responsible for looking after someone with a severe disability for at least 35 hours per week and already receiving one of the first three benefits above.