Becoming a carer is not a role people willingly choose, but is more of a vocation that is bestowed upon them by a collection of circumstances. It is estimated that in the United Kingdom there are approximately 5.7 million people who care for a relative, partner, friend or a disabled child in an unpaid capacity. Collectively, carers save the country around 57 billion pounds each year, which is the equivalent of a second National Health Service. These people belong to all sections of the community, come from all walks of life and have to deal on a daily basis with a diverse set of circumstances, which can be unique to them and the person they care for. In fact anyone can find themselves in the role of carer during any time of their life, from childhood (children are allowed to be carers to a parent!), through to teenagers and any part of a person's adulthood. For all these reasons, it can be difficult to generalise too much about what it is to be a carer and the specific issues that go along with it, so this article concentrates on how being a carer impacts on people's lives, then looks at what happens when a person no longer needs to care for someone.
To begin with, here are a few statistics to put into perspective what it means to be a carer:
One adult in eight in the UK is a carer and one in six households (16%) contains a carer.
Almost one million people spend over 50 hours each week caring for someone.
14% (3.3 million) of the female population are carers, compared with 11% (2.4 million) of the male population who are carers.
About 24% of carers have been looking after someone for at least ten years. 23% have been caring for between five and nine years.
Over a third of carers say they receive no outside help.
65% of carers suffer from ill-health or injury.
59% have deteriorating health as a result of caring.
More than 2.5 million carers try to hold down a job as well as care.
What to Expect When you Become a Carer
When it becomes apparent that you will need to take care of someone, one of the first decisions you will need to make is whether or not you will be able to continue to work. Some will find they have a sympathetic employer who is willing to take into account the seriousness of the responsibilities of being a carer. Some will find that, like most members of the public, their employer has little or no idea of what is involved in being a carer and how this may affect a person's ability to do their job. Instead, an employer may just see someone struggling to maintain the same standards of work as everyone else, and if their work continues to suffer they may well be sacked. Even if this situation does not arise, the carer can find themselves struggling to maintain what are essentially two full-time jobs due to financial pressures and the need to care.
If you are in employment and caring for someone, it may be possible to receive a carer's benefit which will allow you to earn a fixed sum, which should also take into account the cost of paying for outside caring help during employment hours. This can, however, involve some precarious mathematics because you may find you have to work more hours to find the money to pay for outside caring costs, and the more you work the more outside caring help you may need. Therefore, the costs may become unmanageable and you may eventually find you have to earn so much you are no longer entitled to a carer's benefit.
Whether you can afford to do so or not, you may find it impossible to continue to work and take care of someone at the same time, and may feel compelled to leave your job. If this situation arises, there are two main benefits you can apply for. The first benefit is called Carers' Allowance, which may also entitle you to Income Support, which in turn may be topped up with a Carers' Premium. This will provide you with an income that will be more than, for example, the benefits of a single unemployed person looking for work, although the amount will bear no resemblance to a living wage. You can almost certainly look forward to a reduced standard of living, which may involve little more than the ability to run your household and pay bills. It can also become financially difficult to do even routine things such as run a car, buy new clothes, maintain your home and indulge in those treats that make life worth living. The Princess Royal Trust for Carers will be able to provide more information on your entitlement to benefits, as well as offering advice and support on a number of issues.
It can be very difficult for friends to understand the nature of your caring responsibilities and just how serious, time-consuming and demanding they can be, and as such you may find you lose status or a certain degree of respect in their perception of you. When asked what they do, some people find it very difficult to say they are carers simply because of the response this can bring, particularly if they depend on benefits which often seems to lessen the worth of others in the eyes of some people.
Since the life of a carer can be quite static, you may find some friends will move on, get married, have children and pursue other friendships with people whose lifestyle they can better identify with, and so leave you behind. Eventually, you will more than likely be left with a core of friends, although if your caring responsibilities limit when and how much time you can spend away from the house and therefore with them, or how long others can visit you, even these friends are likely to dwindle. It is quite common for carers to find their caring duties considerably limit their ability to keep up a social life, whilst other carers find a social life is completely impossible. The constant reduction of reliable friends contributes greatly to the cycle of the shrinking world of a carer and their eventual disenfranchisement from most social activities. Consequently, many carers lead very isolated lives unsupported by reliable friends with little or no involvement in the usual social pursuits most people take for granted.
If you are single when you become a carer, there is every possibility you will remain single during your time as a carer. Few people are particularly interested in someone who has to take into consideration the welfare of a third person, especially that of another adult, during a relationship. If you are already married when you begin caring, relationships can become very strained. For example, if the person you care for is your partner, you may find it is just not possible to maintain a healthy sex life, or due to the illness/ disability of the person cared for, one or both of you may not want to continue the relationship on an intimate level. Other factors can also play a part in this - stress, depression and even resentment can be experienced by either partner.
There are numerous facilities that cater for holidays for people with disabilities, although it is often said that going to such places does not provide a break for either the person cared for or the carer. They simply provide a change of scenery where the same old problems, stresses and anxieties are taken. More often than not, any choice about taking a holiday is irrelevant for carers anyway, not least due to the costs. Carers simply do not receive enough money to afford a holiday so have to continue with their duties year after year with no break at all.
Other Family Members
Although both parents in a secure relationship may share the responsibilities of caring for a sick or disabled child, it is much more common in other circumstances to find just one member of a family taking on all the caring duties. If, for example, someone is taking care of an elderly parent, the caring duties nearly always fall entirely to one son or daughter because inevitably other family members will keep a distance from the caring environment to avoid any responsibilities falling to them. As well as the lack of money, a career, holiday, social life and personal relationships, this is a significant factor which adds to the deepening sense of social isolation and disenfranchisement for many carers. This also increases the feeling of being unappreciated, which in turn contributes to an increasing sense of a lack of self worth.
How Caring Affects Carers
When you begin caring for someone, the first thing you may notice is just how much of your time will need to be spent around the home. You may find it will be days before you leave the house and you may have to limit trips away to those that are absolutely necessary. This in turn may mean that the opportunity to regularly meet or speak to people does not arise and you may find you will have few conversations throughout the day, or you may even find you go for days or more without talking to anyone outside the home, not counting conversations with - for instance - doctors, community nurses, pharmacists, home helps, shop assistants and so on. The end result of this is a lack of stimulation which can in turn lead to an awareness that your personal world is spiralling in on itself. This psychological process can take years until you eventually reach a point where your world and outlook feels very narrow and restricted, leaving you with an awareness that your mind and personality is not what it was.
Inevitably, there will be times when you feel you simply cannot cope and you will have to fight the effects of depression and accumulated stress. Nevertheless, while you are working through this, you will still be expected to find the strength to cope and to continue with your caring duties. This may intensify your state of mind, leading to what seems like an unbreakable cycle of depression, stress and the need to keep going.
Legislation in Support of Carers
For many years, Carers UK have campaigned on behalf of carers and have been instrumental in shaping legislation aimed at carers. Since 1995 there have been three major pieces of legislation intended to support the lives of carers. The first is The Carers' (Recognition and Services) Act, 1995, which gives carers the right to receive an assessment from their local Social Services Department on their ability and willingness to cope with their caring role. However, there is no compulsion for local authorities to act on the information provided by the carer and no obligation for them to provide services to carers. This has meant that, while carers can choose to receive an assessment, not all local authorities can be relied upon to follow up on the information given by the carer. Consequently, although carers save local authorities very significant sums of money and these authorities are dependent on the work of carers for their social services departments to function effectively, carers can expect nothing in return. This is by definition exploitation of carers nationally by many local authorities in this country. If your local authority claims it is using the Carers' (Recognition and Services) Act as a guideline for services to carers this may be because it does not provide any genuine or tangible support, while giving the impression it has developed a working policy towards carers.
The Second piece of legislation is the Carers and Disabled Children Act, 2000. This Act entitles carers for the first time to undergo an assessment, whether or not the person they care for has also been assessed (sick and disabled people have been entitled to an assessment for services for quite a while). Local authorities were also able to provide services to carers for the first time, and although the Act is vague about what these might be, it is usually taken to include the provision of such things as washing machines and other appliances to help make caring easier, as well as driving lessons and mobile phones to help with the mobility of carers. If you contact your local authority for information on what support they provide to carers, this Act may not be mentioned because there is no obligation for local authorities to adhere to it. This can mean that if you are not aware of this Act, your Council may not volunteer information about it to you. However, if you like listening to political spin about local expenditure priorities, working groups and the need to be patient, it is worth asking someone from your social services department what your local Council's position is in relation to this Act and when they intend to implement it.
The third Act, the Carers (Equal Opportunities) Act, 2003, is new and has only recently been passed into law. The three main points are intended to:
Ensure all carers are entitled to an assessment of their needs.
Place a duty on councils to take into account a carer's outside interests (work, study or leisure) when carrying out an assessment.
Promote better joint working between councils and the health service to ensure support for carers is delivered in a coherent manner.
There has not been enough time since the passing of this Act to see how it works in practice and whether it will provide the compulsion local authorities need to genuinely take carers needs and quality of life into account and so replace the more familiar exploitative relationship that presently exists. So long as this does not involve councils spending more money or utilising extra resources, it may work.
What Happens When Caring Ends
As a carer, you have the right to stop caring whenever you choose, and no member of staff from your local social services department or NHS (etc) should assume you are willing to continue as a carer. However, the decision to stop caring is such a difficult one that very few carers take this option since it is likely to cause distress, worry and even a sense of betrayal towards the person cared for. There may also be emotional obligations to continue to care as well as the sense of a moral imperative. On a practical level it can be very difficult to take the decision to stop caring, simply because there may be no job to go to, few friends left to associate with and even nowhere else to live (if you live in the same house as the person you care for). The two more common ways caring ends are, firstly if the person you care for goes into a nursing home or if sadly, the person dies, and both will create matters that will need to be addressed by the carer.
If the person you care for owns the home you both live in and needs to take up permanent residency in a nursing home, the house will need to be sold to cover the costs of nursing home care. This will mean you lose your home. Due to this, there have been cases where a carer has devoted years of their life to taking care of someone to find they are eventually made homeless. If ownership of the home is shared between you and the person you take care of, when they enter a nursing home you may be able to remain in your home until the person dies, at which time the house will have to be sold to meet the costs of the nursing home. This, however, should not affect your share in the final house price when it is sold, which should remain yours.
If you take care of (for instance) a parent or partner in their own home until their death, things can be made much simpler if they have made a will and the home is bequeathed to you (if this is their wish). If they have not made a will it can be wise to expect other members of the family to want a share of the property, and it may be prudent to bear in mind they may not take into consideration how disposing of the property will effect your housing situation.
If you live in a council-owned property, the situation is slightly different. If your caring role ends because the person you look after enters a nursing home or if they die, your position as occupier of the house should remain unchanged so long as your name is on the tenancy agreement and the property has not been 'passed on' within the family in the past.
However, if you are not part of the tenancy agreement, it is very important to check with your local council's housing department to see how this may affect you in the future. For example, when your caring role ends, and you find yourself the only resident of the property, it may be deemed 'under-occupied' (if there is more than one spare bedroom for instance), and you will be required to vacate your home. Councils do not have to enforce this ruling since there is legal provision for them to use some discretion, but cases where leniency is applied are rare. In fact, depending on the circumstances there may be a number rulings that would enable your local council's to compel you to vacate your home if you are left as the sole occupier. For this reason you should check with your council what you can expect. Any vague or persistently evasive responses from them will not be a good indication of their intent, so it is also a good idea to get independent advice from, for example, the Citizens Advice Bureau or other housing specialists. If you are forced to vacate your home, the council will probably contact you within two weeks of the person you cared for entering a nursing home or their death. Do not expect any compassion, sympathy or understanding of your emotional state from the council as they will remove you from your home as dispassionately and as quickly as possible.
Returning to Work
If you are of working age when you no longer care for someone you will probably need to, or be forced to find employment. Sooner or later this will mean you will have to visit your local job centre if you now claim unemployment benefits, and you may be interviewed by a member of staff. If the member of staff tells you they are there to help you, this will mean their intention is to stop you being an unemployment statistic as soon as possible. No matter what your work history has been in the past, you will be expected to take the first job you are offered, regardless of how suited you are to it or whether you are able to survive on the wage it will provide.
Under normal conditions, a person only has to be unemployed for about six months before finding a job becomes more and more difficult, because employers assume there is a reason you cannot find work within this time. Since caring can be a long-term commitment taking up many years of a person's life, it can be especially difficult for carers to return to the work place, especially as they may find themselves without recent work experience or job references. The Employment Service do not often take this into account, however, and will apply the same pressure on you to find work as anyone else, and will expect you to provide various forms of evidence to show you are actively seeking employment and therefore entitled to unemployment benefits. The Employment Service may also provide you with either applications for a job or even a job interview, and you will be compelled to follow them up. Again, it will be irrelevant how suited you are to the work or whether you are able to survive on the given wage. The kind of job vacancies the Employment Service usually force people to apply for are those that are otherwise difficult to fill.
Periods of unemployment are tough for the majority of people, but can be especially daunting for carers who have been away from the job market for some time. The need to find work as well as the pressure the Employment Service places on job seekers is likely to come at a time when ex-carers may be dealing with either recent bereavement or the stress and guilt of placing a cared one into a nursing home, as well as the continued isolation, disenfranchisement and the anxieties brought about by being a carer in the first instance. At the same time, an ex-carer may well be struggling with the issues and the threat of losing their home, and there will be very few avenues of compassion or understanding open to them.
Caring can be a very strenuous and demanding vocation that many people have bestowed upon them. As time passes in this role, you may think you can rely on certain individuals and bodies of authority to have an understanding of what for many is a selfless sacrifice of many years of their lives. However you will eventually learn that such understanding is extremely sparse as you continue to carry out your duties with little or no support. You may also find this biting lack of regard or compassion will be particularly acute when you are no longer a carer, and at a point where you feel you are teetering on the edge of the worst this society can throw at you.
Related BBC Links
See Caring for Carers, courtesy of BBC Health.
Want to improve your knowlegde about consumer rights, concerning anything related to disabilities? Have a look at the BBC Watchdog Guide to Disability.