A carer is an individual who takes on the responsibility of providing unpaid support for a family member or friend who is unwell and could not cope without their help.
According to the charity Carers UK, around six million people in the UK are currently caring for someone. This could include a relative who is suffering from a terminal illness, or a close friend who is struggling with a mental health problem or substance abuse.
Every single day, an estimated 6,000 individuals begin the difficult journey of caring, equating to more than two million individuals taking on the responsibility each year. Becoming a carer is rarely a personal choice, and usually happens out of concern that if they were not to take on the duty of caring for their loved one, who else would?
UK carers save our economy an estimated £119 billion every year. They come from all age groups – from teenagers to pensioners, all cultures and all professions, all making sacrifices to look after their loved ones to the best of their ability.
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Children and young people who have taken on the responsibility of looking after a family member affected by a disability or an illness are known as young carers.
Young carers often carry a heavier burden than that of an adult, simply because the emotional and physical responsibilities they face are usually expected of someone much older and more experienced.
Depending on the level of care they need to provide, young carers can often miss out on many childhood experiences such as playing and interacting with their peers, something that most other children of the same age take for granted.
A young carer may have to perform either some, or all of the following tasks on a regular basis:
- grocery shopping
- preparing meals
- cleaning the house
- physically supporting an adult whilst they are getting up, walking up the stairs etc.
- managing the family budget and collecting any benefits
- collecting prescriptions and administering medication
- looking after younger siblings or other family members
- providing personal care such as washing, dressing and toilet duties.
Whether a young carer is providing full or part time care, these responsibilities can have a huge impact upon their lives.
What challenges do carers face?
Becoming a carer is a life changing decision, often happening without much thought being given to the possible consequences.
Some individuals may take on the responsibility, believing it will only be a short term solution. For instance caring for someone who has recently been discharged from hospital whilst they regain their former strength. Sometimes, sadly, this doesn’t happen, and the level of responsibility creeps up and up until caring eventually becomes a full-time occupation. Others may have been caring since childhood and won’t know any different.
Each case of caring is different, and no two people will be affected in the same way. It can of course be a gratifying and rewarding experience, strengthening your relationship with the person for whom you are caring, and helping you to build a specialist skill set you wouldn’t have otherwise discovered.
On the other hand, carers without the right information and a strong support network can find their lives devastated because of their caring role. Numerous studies have suggested that caring can result in poor health, social isolation, poverty and mental health problems. Unfortunately, caring for someone else on such an intensive level means that carers can forget or don’t have the time and resources to care for themselves.
With statistics suggesting that at some point during our lives we are all likely to become a carer at one point or another, it is essential that we ensure carers are also cared for.
Carers face the following challenges:
A huge problem for a large number of carers is financial stability. Some individuals are able to maintain full or part time jobs, but many must give up work in order to care full time.
According to research conducted by Carers Trust (formally known as The Princess Royal Trust for Carers), of the 800 unpaid carers questioned, 37% said they did not want to wake up in the morning because of the financial situation they would have to face. A huge weight to bear on top of looking after both yourself and a loved one who is unwell.
Additional findings from the same research also revealed the following results:
- 53% earned less than £10,000 per annum
- 60% had to spend their savings to support the friend or family member they were caring for
- 89% admitted they were financially worse off as a result of their caring role
- 39% were worried about losing their homes
- 10% had borrowed high interest loans of 41% plus APR
- 62% had to borrow money from friends or family
- 45% wanted to run away from their role as carer
- 15% turned to drugs or alcohol as a way of coping
- 37% said they feared the future.
Currently, financial support for carer’s in the UK is not sufficient, though there are certain benefits that some individuals may be eligible for. More information about financial support can be found below in the 'Help for carers' section.
Relationship issues and social isolation
It is very difficult for individuals who aren’t carers to imagine a life that is dedicated to looking after another person.
Carers can often feel like others are unable to identify with their experience, and may face discrimination or a certain level of stigma from those who are not able to understand their caring role.
A significant obstacle for carers is maintaining healthy relationships between themselves, family and friends. For many carers, managing the time they spend between the person they are caring for and the other people in their lives may be very difficult and may become a source of stress.
It may be that the needs of the person being cared for are so great that a carer has very little time to spend with their partner or the other people in their family. This can lead to tension and strain developing in relationships, adding further stress and pressure to a carers already demanding life.
A parent who is looking after their ill or disabled child may find that their other children develop resentment and jealously issues as a result of their parents dedicating the majority of their time to another sibling.
In a situation such as this, it is always best to be very open with your children about why it is you need to spend that additional time caring for their sibling, ensuring you take the time to answer any questions your children may have about the issue.
Social isolation can also become a problem, as friendships can suffer significantly as a result of the demands of caring. Friends can find it difficult to grasp the full spectrum of a carers responsibilities, or it may be a simple case of a carer no longer having the free time or energy to maintain friendships after the completion of their daily duties.
Lack of interaction on a daily basis with colleagues for instance, can also contribute to feelings of loneliness and social isolation. According to statistics, over three million individuals are juggling caring with their working life, though the demands of caring mean that one in five carers will have to give up their jobs entirely to care full time.
If this sounds familiar and you are feeling lonely or isolated then joining a local support group where you can interact and share experiences with others in a similar situation could be of huge benefit.
If you are really struggling in your relationships be sure to mention this in your carer’s assessment. If appropriate, your local authority will look into how they can help you by providing respite care for example, which will relieve you from your caring responsibilities temporarily so that you are able to spend valuable time with your loved ones.
Maintaining optimum physical health is essential for carers as this will allow them to provide the best possible care for others, and will also ensure that they are happy and healthy in themselves.
Unfortunately for many carers, they become so involved in looking after the health and needs of another that they either overlook their own health requirements, or repress them for fear of appearing selfish.
Being a carer is demanding, and often after they have completed all of their caring duties, there isn’t much time left for regular exercise or cooking healthy and nutritious meals. Carers may also suffer from poor or disturbed sleep, and back and joint pain from frequently supporting the weight of another person.
It is important for carer’s to remember that if they become ill, they will no longer be able to provide care, so it is in everyone’s best interests that they address any health issues if and when they occur.
Physical health issues such as weight gain, poor sleep and joint or back pain are all problems for which help should be sought from a GP.
Mental health problems
According to figures compiled by Carers UK, 625,000 carers are affected by either a mental health concern or physical ill health as a result of caring.
The extra responsibilities that individuals take on when they become a carer can contribute to a significant rise in stress levels, the symptoms of which can be both physical and emotional. Though the symptoms will vary from person to person, they can include headaches, twitching, chest pain, dizzy spells, cramp, lethargy, difficultly concentrating, anxiety, anger and changes to weight.
In addition, if these symptoms are left untreated they may worsen and could eventually develop into depression. If you are concerned that you may be suffering from depression, it is really important that you seek help. Visit your GP who will be able to diagnose your condition and will advise you/refer you for further support. Counselling has also been found to be hugely beneficial for depression, providing you with a confidential outlet for your feelings.
Resentment and guilt
Carers can become trapped in a cycle of feeling resentment towards the person they care for, and feeling guilty and selfish for having those feelings.
Carers may have to make huge sacrifices in order to care for a loved one. Perhaps they have had to leave a job they loved with which came a great salary, pension and benefits, or maybe have had to give up a hobby they enjoyed, don’t see their friends as much and generally are not leading the life they had in mind for themselves.
All of these things are very difficult and selfless things to do, and it is completely natural to sometimes feel a longing for the life you had, or could have had before becoming a carer.
Carers may also find that in some cases, the person they are caring for is unable to fully appreciate the sacrifices that have been made in order to care for them, and this can also lead to further resentment.
All of these feelings are perfectly normal, and carers should by no means feel guilty of selfish for feeling them. Instead of bottling them up, these feelings should be acknowledged as important and dealt with either by talking to a friend or family member, visiting a local support group, going online and expressing your feelings in a forum, or by seeking support from a counsellor.
Carers should also bear in mind that in many situations the person being cared for feels guilty for the sacrifices that have been made for them, and feel as though they are a burden.
The death of a loved one is difficult for any person, but can be particularly hard hitting for a carer who has dedicated a great deal of their time to looking after a person. Your reaction to the death of someone you have been caring for can provoke a very mixed reaction, on one hand you may experience a great sadness, and on the other a sense of despair and uncertainty as caring for them had been you’ll sole purpose for a long period of time.
If you are struggling to come to terms with a loss, there are a number of organisations offering help to assist you in overcoming your grief. Seeking help from an independent counsellor specialising in bereavement may also be of benefit.
Life after caring
The death of a person being cared for often causes great sadness for former carers, and may also spark feelings of uncertainly about the future. When a caring relationship reaches the end, it can be very difficult to come to terms with the loss, move on and eventually begin a different role.
Described as the 'cost of caring', compassion fatigue occurs when caregivers (medical professionals in particular), develop their own symptoms as an indirect response to the suffering they witness. It is common for traumatic events to leave lasting marks on those who are touched by them, and carers are particularly vulnerable. Irrespective of how skilled they may be at emotionally distancing themselves from a patient's personal trauma, they may become overtaxed by the work they do.
A carer who is internalising traumatic stress and compassion fatigue may experience symptoms that are very similar to their patients - difficulty concentrating, hopelessness, exhaustion, irritability and feeling discouraged about the world. If not addressed, these emotional and physical side effects can escalate and lead to serious problems such as depression, anxiety and in extreme cases suicidal thoughts. A carer's ability to do his or her job is also likely to be affected.
Acknowledging that you may have compassion fatigue is the first step to recovery, and this should be followed up with a variety of self-help techniques that prioritise wellness and the reduction of stress and anxiety. Counselling is thought to be particularly beneficial as it allows sufferers to open up about their feelings and experience a sense of emotional release.
We wouldn’t work full time without having any days off or any holidays, so why should caring be any different? Caring for another person can become just as demanding (if not more) as a full time job, making breaks and time off ever the more important.
Often carers can feel selfish for admitting that they need a time out, but it is important to remember that everyone needs and deserves a break, and by allowing themselves this small luxury, carers will be able to recharge their batteries so that they can provide optimum care when they return to their position as carer.
Residential respite care and domiciliary care are two of the most common options. The former offers residential care for the person you are looking after whilst you are away, and the latter involves someone visiting your home and taking on your responsibilities for a limited period such as overnight or even just for an afternoon.
If you are a carer who is looking to take a break, discuss your options with your care manager or social worker.
A huge concern for many carers’ is how they will handle their finances, as often they feel compelled to give up stable jobs in order to care full time. Though government support and funding for carers is by no means sufficient in the UK, there are a number of benefits for which carers or the person being cared for may be eligible, possibly helping to ease financial strain slightly.
Key financial support for carers includes the following:
- Carers Allowance
This is the main benefit that some carers are able to claim. It is intended for those who regularly spend a minimum of 35 hours each week caring for someone who has a disability and who receives a disability allowance, attendance allowance or a disabled pension.
The allowance amount is not income dependent and instead is a standard rate that is currently £55.55 per week (to be reviewed in April 2012).
- Disability Living Allowance (DLA)
This is a means tested benefit that is paid to individuals whose disability or mobility needs began before they were aged 65. There are three rates, lower, middle and higher.
- Attendance Allowance
A means tested benefit paid to individuals with a disability. There are two rates, a lower rate for those who require help during the day and a higher rate for those who need care both during the day and night.
- Housing or council tax benefits
Individuals who are on a low income may be entitled to certain housing or council tax benefits to help them to pay their rent or council tax. These benefits come from your local authority.
- Tax credits
There are a range of tax credits for which the person being cared for and the carer may be eligible:
Child Tax Credit is a benefit that is intended to assist families on a low income to care for their children. The carer of the child does not have to be the child’s mother or father, but must be responsible for them as the main carer. The benefit is income assessed so the higher the income of the carer the less they will receive; however they are able to claim this benefit alongside others.
Working Tax Credit is there to top off the income of carers on a low wage, as long as they are working a minimum number of hours each week.
Carers’ Premium is for individuals who receive Carer’s Allowance and are also entitled to claim Income Support or Pension Credit. If this is the case they may also be eligible for an extra payout known as the Carers Premium.
Knowing what benefits you are entitled to and how to go about claiming for them can be a complicated and confusing matter. Each individuals case is unique, and benefits which are paid out to some carers may not be to others.
In order to maximise the potential of benefits, it is advisable to seek advice from a specialist organisation such as Citizen’s Advice Bureau, who will be able to check your entitlement to benefits and provide you with advice about the application process.
For further information and advice about benefits, please visit the Directgov: Benefits and financial support page, or Citizen’s Advice Bureau.
The Carers (Equals Opportunities) Act
The Carers Act was established in April 2005 in a bid to ensure and promote carers taking up opportunities such as studying, hobbies and working which are limited by their caring role.
The act was intended to form the cornerstone of good practice for carers by both the health service and councils, and calls for the following:
- Local authorities have a duty to make sure all carers are aware that they are entitled to an assessment of their needs.
- Local authorities have a duty to take into account the outside interests of a carer, such as leisure time, when they are performing an assessment.
- Local authorities and the health service must co-operate to ensure that carers receive the right support.
View the full Carers (Equal Opportunities) Act 2004 legislation for further information.
Counselling and mental health support
Counselling is a form of therapy that provides individuals with extra emotional support and an outlet for their feelings during times of need.
Becoming a carer is a life changing experience that will undoubtedly trigger an upsurge of confusing emotions that are difficult to deal with without some external support. If this is the case, you may benefit from the help of a qualified counsellor or psychotherapist who will provide you with some mental health support.
What a counsellor offers is a neutral environment in which individuals are able to offload their emotions, without feeling guilty, selfish or as though they are subject to judgement.
Individuals who are struggling with the following issues may find counselling to be of benefit:
- mental health problems
- relationship problems
Carers are likely to experience all manner of difficult obstacles throughout their lives, and counselling is an effective tool that could help them to understand, explore and address these feelings so that eventually they are able to move forward with a more positive outlook.
What should I be looking for in a counsellor or psychotherapist?
There are currently no official rules or regulations stipulating what level of training a counsellor dealing with this area needs. There are however several accredited courses, qualifications and workshops available to counsellors to improve their knowledge of a particular area, so for peace of mind you may wish to check to see if they have had further training in the area for which you are seeking help.
Another way to assure they have undergone specialist training is to check if they belong to a relevant professional organisation representing carers counsellors.
Some people also find it beneficial to join a local support group so they can share any challenges they experience with other carers.
What our experts say
- Caring for carers
Graeme Orr MBACP(Accred), UKRCP Reg. Ind. Counsellor12th May, 2016
- How to survive being a carer
Danielle Coleman BA(Hons), postgraduate diploma psychotherapy, MBACP Registered8th February, 2016
- Being a caregiver: but who will take care of me?
Ilaria Tedeschi7th January, 2016
- Care for carers
Judith Schuepfer-Griffin Registered MBACP, BA Hons7th November, 2015
- Are you a carer? Do you have caring responsibilities?
Mary Saunders MBACP Registered2nd November, 2015
- Caring for others at its best!
Hulya Kusella, Dip, BSc Hons, CCF, Reg MBACP (Accred)28th September, 2015
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