More and more people are finding themselves caring for elderly relatives or for the disabled. If this happens to you, as a Carer your life will become entwined with that of the person you care for, more or less according to the amount of disability.
There will often be primary carer, commonly a spouse, but there are likely to be others in the background who are secondarily involved – for example grown up children who may live in another town or even another country but who will need to take an ongoing interest.
Since the health of the person you care for depends on the ability of you as their carer to function it is important for you to maintain your health, because if you are out of action the person you care for may suffer.
Coping as a Carer
If you find yourself in the position of being a carer you therefore need to make sure that you look after yourself as much as you can. Start by working out what you have to do for the person you care for, particularly the time and effort it takes, how often you have to do it, how much it costs you and how predictable its occurrence is. This will give you an idea of how much it necessarily affects your life and areas in which you may be vulnerable. You may well be able to work out better ways of doing things in order to minimise the impact on you, notably fatigue.
This deals with the day-to-day routine, but it will allow you to think about peaks and troughs. This will stop you being overwhelmed if a crisis such as a fall or a hospital admission occurs. It will also allow you to recognise opportunities in which you can take some necessary time out, and it will give you perspective on how to avoid crises.
You will find yourself being risk-averse, for example in trying to prevent the person you care for falling because you will know what the consequences would be and how they will affect both of you. Stand your ground here if people consider you to be over-cautious, and remember that you have to accept certain risks because it unduly restricts the person you care for. You can smother them with care.
Each case is unique, and you will need to cope with new stresses, be they financial, physical or emotional. Keep an eye on your fatigue levels because you can get into a situation in which you are constantly tired which is not good for you and not good for the person you care for. It will give you an unduly pessimistic outlook on life as you struggle and you will be at even greater risk if any crisis does occur. So listen to the demands of your own body and devise ways in which to satisfy them or realise that you cannot and that therefore you need outside help.
You should structure all your caring activity as much as possible. That makes it far easier to hand particular tasks over to somebody else, for example if you have a bout of ‘flu or need an operation yourself and to take them back when you are better.
Where you realise you need outside help you will need to decide what suits you. Since every patient’s care needs are different and you are the closest to them you need help that suits both of you as a unit. The health services and charities can be very helpful here and it is very much worth knowing what they offer and how to engage with it.
However you will need to be aware that since the taxpayer or charity donor must pay for these services (and you may have to put in some money yourself) each agency will offer a fixed set of services and these may or may not suit you. This may, if the care needs are unusual, put you in a position in which you are offered services which at the very worst can be counterproductive and at the very best can be excellent. So find the right agency or charity and constantly review and tweak the help you get.
You should also be aware of any welfare benefits that you or the person you care for qualify for and get help in filling out the necessary paperwork. The person you care for may qualify for Disability Living Allowance. If they do, and you care for them for 35 hours per week or more, you may qualify for Carer's Allowance. Make sure you understand all the legal conditions attached to the benefits and how it affects your tax position and that of the person you care for. Carer's allowance is taxable; Disability Living Allowance is not.
If you need it and your budget will run to it you may need to employ a paid carer which brings other responsibilities you must understand as an employer. Investigate all the options – these range from carers who will come for a set number of hours per day or per week to live-in arrangements in which people will live in like a lodger but instead of paying rent will provide care (a sort of carer “au-pair” arrangement). Take up references and get advice – in the end it is what suits you that counts.
During crises, secondary carers such as children living at some distance can still provide some support in helping to avoid panic, manage situations and take tasks such as telephoning and enquiring off you, or of course coming in as an emergency to help keep things running.
There are technologies which the person you care for can use to avoid crises or make sure that once they have happened they are picked up quickly and acted upon. For example, the elderly can wear an electronic device which monitors position, and if it notes that the wearer has suddenly moved from vertical to horizontal and that there has been no movement thereafter for then next ten seconds it automatically contacts a help-centre which can activate help. This is useful for dealing with falls promptly, but the person you care for may not see the need to wear such a device considering a fall to be unlikely. It may take a bit of perseverance to convince them.
Since you are likely to be caring long-term, you need to know how to and then to manage to leave some room for your own life. If you do not, the results will be bad for you and bad for the person you care for since your ability to continue to care will be compromised.