“Unless we support the carers, the carers aren’t going to support the patients, then we’re all going to be struggling.”**
When you are the carer of someone who is has a life-limiting illness, it is very easy to put your own needs on the back burner and concentrate on the needs of the person who is unwell. Perhaps that is why many carers enter the world of caring with their eyes wide shut to the reality that, if they don't take care of themselves, they will not be able to take care of anyone else.
When someone is diagnosed with a life-limiting illness, it is natural that the focus is placed on them: helping them deal with a diagnosis, and managing their condition. However, even though the diagnosis impacts on that person’s family and friends, over time it can feel like all the focus is on the individual with the condition, and that the impact on carers goes unrecognised. Carers themselves may feel they had little choice in taking on the role, but feel equally guilty for considering their own needs, or that they might be judged if they talk about their feelings.
Research suggests that many carers suffer considerable mental and physical stress during long periods of caring for someone and are twice as likely, in fact, to suffer from ill-health compared to non-carers – and 70% will hide their suffering.
Can any of this be avoided?
Yes. With forward planning most of it can. Sudden diagnoses can derail any hope of preparation, but finding a moment to sit down and consider some of the measures that can be taken, can save a great deal of time and emotional stress later.
Find out whether social services will be responsible for funding their care, or whether it will be self-funded. Half of all joint finances belong to the unwell person, plus all savings, stocks and shares solely in their name.
If this totals £23,250 or more, they must self-fund.
If it totals £14,250-£23,250, they must partially fund.
If it totals less than £14,250, the council will pay for their care.
Only eligible income will be taken into account, not including income belonging to anyone living with the unwell person.
Anyone who provides, or intends to provide, a substantial amount of care on a regular basis, has a legal right to a Carer’s Assessment. Once a carer has requested an assessment, the local council has a duty to carry one out. You can request this by contacting the local council adult social services department of the person you care for.
Attendance Allowance and Personal Independence Payment
An Attendance Allowance can help with extra costs. It is tax free and not means tested, and paid to people who are 65 or over who have care needs. It’s paid at 2 different rates (£59.70 or £89.15 a week) and how much you get depends on the level of care that you need.
Those under State pension age may be entitled to a Personal Independence Payment (PIP). Receiving an Attendance Allowance or PIP may also entitle you and/or the unwell person to further assistance with council tax, and may qualify you for other subsidies (such as a Carer’s Allowance). Special rules allow people who are terminally ill to get help quickly.
Further information can be found here:
What is a Carer’s Allowance?
Carer’s Allowance is not means tested and is the main subsidy for carers, totalling £62.70/week. If you are looking after someone for 35 hours a week or more, you may be eligible. If you are receiving certain other subsidies, including a State Pension, you may not receive a Carer’s Allowance, though it may still be worth you making a claim. There is a cap on how much you can earn from work, and still be entitled to Carer’s Allowance.
Further information can be found here:
NHS Continuing Healthcare
Those with complex, long-term health needs may qualify for free social care, arranged and funded by the NHS. This is known as NHS Continuing Healthcare. To be eligible, you must be assessed by a team of healthcare professionals (a multidisciplinary team).
The assessments can be complex; an organisation called Beacon offers free independent advice on NHS Continuing Healthcare, available here:
Hospice Carer Support
Many hospices across the UK have developed their own carer support services, ranging from respite admissions and coaching courses to one-to-one counselling sessions. Contact your local hospice to discover what is available, and how you can be referred to them:
On a practical, day-to-day level, a family/friends rota can help ensure not all care falls on one person. Also, if there is the possibility of allowing someone time off, contactable only for emergency calls, this might give them the head space they need in order to recharge. It goes without saying that eating a balanced diet, drinking plenty of water, exercising whenever you can - Zoom comes into its own here - and going outside when the weather and commitments allow, can all be beneficial.
If care is provided in the home, these moments to yourself can be precious, and allow other, paid carers freedom to work uninterrupted.
It is very helpful to have someone to talk to about your feelings or even simply writing down your thoughts and emotions can be beneficial.
If you need help, ask for it. If you can, pay for it. If you pretend you are managing, people will believe you, so don’t. Remember, this can quickly become a lose-lose situation. You will not be able to look after someone who is unwell if your health suffers, so please do them a kindness - and look after yourself.
**Ewing G and Grande GE. Providing comprehensive, person-centred assessment and support for family carers towards the end of life: 10 recommendations for achieving organisational change. London: Hospice UK, 2018.