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Caring for someone with a life-limiting or terminal illness

Carers are employees with significant caring responsibilities that have a substantial impact on their working lives.

These employees are responsible for the care and support of a child with a life-limiting condition, or a relative or friend who is older, disabled or seriously ill and unable to care for themselves. (Adapted from Employers for Carers: www.employersforcarers.org/resources/definition-of-a-carer)

Caring support can go on for years but can start suddenly when someone becomes ill. As a carer, you may not always think of yourself as a carer or want to be defined as one.

You may see it just as something you do as part of normal family life. In the context of the workplace, carers are still valued colleagues with skills and experience.

There are legal protections and legal obligations towards carers. If you are one, it is well worth talking about it with your line manager.

Caring can be difficult to manage alongside a job. It can amount to a job in itself. The demands on carers can be unpredictable or may grow over time.

It can be a help just to know that your manager understands what you are coping with and why you might sometimes be rushed or tired or sad. There may also be practical things that the organisation can help with directly, such as arranging flexible working.

Your HR team will be able to signpost you to other possible sources of financial and practical support, such as a carer’s assessment or carer’s allowance.

If your employer is signed up to an Employee Assistance Programme (EAP), you will have free access to a 24-hour confidential helpline offering information and advice.

Some EAPs offer advice on issues such as care for older people and financial issues. Your HR team will know the details of what is available to you.

Pre-bereavement

If you are caring for someone with an incurable illness, such as dementia, you may begin the grieving process long before the actual death takes place.

The bereavement section of this booklet can help prepare you for the range of emotions you might experience.

“I’m 30 now but have been a carer since as early as I can remember. A few years ago I made contact with the local carers’ centre. They’re great and a real support”

Flexible working

Everyone has a legal right to ask for flexible working once they have been employed for 26 weeks. The law allows you to do this once a year.

You may find that your organisation lets you ask for changes more often, which can be helpful if you are dealing with illness or caring responsibilities where you can’t be certain how things are going to develop. To make flexible working as successful as possible for everyone, you may find that it is best to:

  • try out a plan and see how well it works
  • review it and discuss if you need to change it
  • keep this conversation going with your line manager.

You may want to warn your manager that you might need occasional leave for emergencies, for example if care arrangements break down unexpectedly.

Your manager and HR team will be able to let you know how that will be treated – whether it will come from your annual leave or whether they have special arrangements for carer’s leave.

If the person you are caring for gets worse or is about to die, they may need to spend time in hospital or in a hospice. If you have been looking after them at home, this can be a big change for you, but you will still need time to play your part.

For example, you may need to join in meetings with the professional staff looking after your relative. The last days and hours can be especially precious and you may want to spend as much time as you can with the person you have been caring for.

You can prepare yourself and anyone else who needs to know by looking at the ‘What to expect when someone is dying' section on the Hospice UK website: www.hospiceuk.org/what-to-expect

Carer’s assessment

If you are caring for an adult who is disabled, ill or elderly, you are entitled to a carer’s assessment from your local council or trust.

If the council decides that you as a carer have eligible needs, the council has a legal obligation to meet these needs if you want them to. Some councils and trusts in England, Wales and Northern Ireland charge for carers support.

If they do, then they carry out a financial assessment to decide what, if any, contribution they charge. Carers in Scotland are not charged for support provided by the council.

You can check out the eligibility criteria on the website of the Social Care Institute for Excellence (https://www.scie.org.uk/care-act-2014/assessment-and-eligibility/eligibility/criteria-carers-needs.asp). You can find further links in our useful resources section.

Financial support

If you are spending 35 hours or more a week on caring, you may be eligible to claim Carer’s Allowance. There is a cap on how much you can earn and still qualify but this is an option you might want to look into, especially if you are having to reduce your working hours.

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Company limited by guarantee. Registered in England and Wales No. 2751549. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112.

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