Carer/ Caregiver Meaning and Duties

A carer/ caregiver looks after someone else – such as a partner, a parent, a friend or other family member.

The person being cared for may need care due to chronic illness, disability, mental health issues or substance abuse problems.

A caregiver can be any age, as can the person receiving the care. Each care situation is unique.

A carer/ caregiver can come under many other names: mother, father, sister, brother, cousin, aunt, uncle, friend. You could also be called a carer, a caretaker, a guardian or a minder.

Many people may not even realise that they are a carer, as they assume that looking after a loved one is just what you do. If this is you, you are not alone. There are people and organisations out there who want to help you.

What Defines a Carer/ Caregiver?

You are defined as a carer if you are looking after someone regularly because they are ill, elderly or disabled – including family members.

There are different types of carer. You can be paid or unpaid. Some people work with disability organisations or in care homes to become paid carers. Those that are unpaid will usually be caring for a loved one. That could be a parent, a child or a friend. They might be cared for due to long-term illness, disability or because they are elderly.

Some people in society need a little help in daily life. This is where you, the carer comes in. Your caregiving is so important, to you and your loved ones.

A few terms come with being a carer that can be useful, such as primary and secondary carers. To be a primary carer means you are the lead person taking care of someone. Usually, you are their relative or legal guardian.

However, this doesn’t mean that you cannot also share caregiving responsibilities with someone else. Suppose you share in someone else’ care and support the primary caregiver. In that case, that means you are known as a secondary caregiver. 

Usually, you have a primary caregiver and a secondary caregiver. These are sometimes the two parents or guardians, but can be anyone looking after someone else. However, suppose the primary caregiver is not at home or on duty, as it were. In that case, the secondary caregiver becomes the primary caregiver at that point.

Carer/ Caregiver Duties

Caregiving duties and responsibilities can be anything that happens in a person’s daily life. It ranges from washing and dressing, to emotional support through difficult times.

Carers help with:

• washing, dressing or taking medicines
• getting out and about and travelling to doctors’ appointments
• shopping, cleaning and laundry
• paying bills and organising finances

They can also give emotional support by:

• sitting with someone to keep them company
• watching over someone if they can’t be left alone

Life as a Carer/ Caregiver

Life as a caregiver will be very different depending on your situation. You could be a part-time or a full-time carer. You could be dealing with a parent’s physical disability or a partner’s mental illness. No matter whom you are caring for, the life of a caregiver is a tough one. Carers can face stress, anxiety and depression. For example, caring for someone with Alzheimer’s or Cancer can cause issues with the carer’s mental health.

Organisations such as the Alzheimer’s Society have begun an initiative to battle this depression. Here, carers will work with trained community therapists to work through their feelings. The therapists can help you deal with being a caregiver, for illnesses that cause great pain to your loved ones.

As a caregiver, life can be overwhelming but also rewarding. You will find some ways to help with any stress or anxiety below – ways in which to carve a little time in your day for yourself.

How Can I be an Effective Carer/ Caregiver?

We all have strengths and weaknesses, but there are some things to think about when caring for someone else.

1. You must be competent. You will be in charge of another person’s life. You will have to know what is going on with the person you are caring for: their illness, medications, and who they are as a person, what they like and dislike, so you can help them get the most out of their activities.
2. You must be patient. Going through illness or disability isn’t easy, and these changes can be difficult, leading to bouts of depression or anger. Be there for the person you are caring for and understand that there will be good and bad days.
3. You also must care. Being empathetic towards the person you are caring for is necessary. To understand human emotion and feel for the person you care for, will help you know what they are going through. That should also help with your self-care, by being aware of your emotions and the state of your health.

What is the Role of a Carer/ Caregiver in the Life of Someone with a Mental Disability? 

Suppose you are a caregiver for someone with a mental illness or disability. In that case, your role can look very different depending on the type of mental disability. You can be there to simply listen to your loved one, or you could be in charge of feeding and washing them.

Mental illnesses such as depression can take their toll on the body as well as the mind.

Communication can be difficult for people with mental health conditions. Give them time to make themselves heard, and let them know that you accept them. Some people will feel cut off from others when diagnosed with a mental health condition, as they are often demonised in media.

Making sure that the person you are caring for has the correct diagnosis is also essential. The help they will get from doctors or therapists will differ depending on their illnesses. Go with them to their appointments if allowed, to make sure they are telling the doctor everything. And that they are coming across correctly.

Like a carer of physical disabilities, you should also make sure you look after your mental health. Watching a loved one go through emotional turmoil can be tiring on you, as well as your loved one. Make sure to take breaks away – maybe meditate, or exercise to keep yourself in a good place.

There are resources out there to help, such as local carer groups or the nurses and doctors at your local mental health clinic. You can receive financial support just like a carer of other illnesses and disabilities. And you can get help from your local council or social services.

Carer/ Caregiver Role Strain

Being a carer or caregiver can put a strain on you. It is a tough job, whether you are caring for someone alone or with help. Caregiving can lead to many problems such as depression, poverty and isolation.

But again, remember: there are resources out there to help, such as local carer groups or the nurses and doctors at your local mental health clinic. You can receive financial support just like a carer of other illnesses and disabilities. And you can get help from your local council or social services.

Why is Being a Carer/ Caregiver so Hard?

Being a caregiver/ carer is so hard because you are watching a loved one change, often for the worse.

This could be mental due to dementia or due to a physical disability. You might find it hard to see the person they were before they became sick, or you might feel like you have lost the person you were before you became a carer.

It is difficult because you are on call as a caregiver 24/7, especially if you are doing it alone. You might feel that you have lost any free time. It is normal to have many different feelings while being a carer, ranging from the good to the bad.

Doctors often think of carers as ‘hidden patients’. If the bad feelings are lasting a long time and impacting your life, then this could mean that you are stressed and could lead to burnout.

Compassion fatigue can be dangerous because it can lead to medical errors, or/ and disrupted relationships. With the person you are caring for, as well as other family and friends. Compassion fatigue can be a cloud over your empathy, meaning you might not notice things going wrong, with others or yourself.

If not managed, then it can lead to more significant mental health issues, such as depression and Post Traumatic Stress Disorder (PTSD).

Can you get PTSD from Being a Carer/ Caregiver?

Being a carer can cause you stress and lead to burnout, compassion fatigue, PTSD, and anxiety. You are caring for someone else’s well-being, and often making decisions about their lives and health.

There is little research about the link between caregiving and PTSD. Still, psychologists know that there is a link between chronic stress and PTSD. The symptoms are similar to people suffering from flashbacks, recurring dreams, insomnia and loss of concentration.

People who suffered from depression and anxiety are more likely to suffer the effects of PTSD. So, you do need to look after yourself as well as the person you care for.

You want to use the resources mentioned in this post, not only for self-care but for reaching out for help.

How Do I Get Rid of Compassion Fatigue?

Compassion fatigue can be a fatigue of caregiving, causing physical and emotional exhaustion and a reduction in empathising.

It is also called secondary traumatic stress or caregiver stress syndrome. If it is not managed, then it can severely affect your health and well-being.

There are a few ways for you to reduce your chances for any compassion fatigue or stress:

1. Keep a diary and be aware of any changes in your moods, stress levels and feeling of compassion fatigue. Using compassion and empathy every day can be very draining, and you must recharge.
2. Prioritise self-care and taking time for yourself every day, even if for just ten minutes. This includes having a good sleep routine, a good diet and getting exercise.
3. Spend time with friends and family outside of the person you care for. This can help you recharge and get out of your own head.
4. Join caregiver groups or see a therapist. That can also help you work through any bad feelings you are having. It will also show you that you are not alone in what you are feeling.
5. Allow yourself to feel, to grieve and to cry. These emotions are better to be worked through than to bottle them up.

What is the Difference Between Compassion Fatigue and Burnout?

Compassion fatigue and burnout have similar symptoms, such as physical and emotional exhaustion. However, burnout develops over time. Whereas compassion fatigue can come on much quicker, where you become traumatised by the health of the person you are caring for.

There are rough statistics that 30% of carers die before the person they are caring for. That is because primary caregivers usually do not find time to look after their own health. They don’t go to their own appointments, or are simply fed up of being in clinics with the person they are caring for. That means that illness that can be cured if found early enough – such as breast cancer – end up killing the carer, because they found it too late.

In order to look after others, it is imperative that you look after yourself too. Find that hour to go to your doctors’, take time for yourself. It might sound easier said than done, but there are people out there that want to help you. Organisations and government schemes that can get you the help you need.

What do Carer/ Caregivers Need Most?

Caregivers need physical and emotional help the most. That can be help in their daily caregiving tasks, but also for looking after themselves.

Being a caregiver takes a toll in your own health, so it is vital to have support physically or emotionally.

If you are a loved one of a caregiver, check in on them more often, to see if they need help. This does not mean you taking on their tasks, but could mean you letting them talk about their lives or helping them find resources or external support.

Carer/ Caregiver Support – Who Takes Care of the Caregiver?

As a carer, there is support out there for you. You probably want to be there for whoever you support 24/7. However, that can lead to burnout and caregiver stress syndrome.

There are ways around this.

Care for the Carer/ Caregiver

One way of giving care to a caregiver, is through respite. The main types of respite care are:

1. Day care centres
2. Homecare from a paid carer
3. A short stay in a care home
4. Getting friends and family to help
5. Respite holidays
6. Sitting services

Organisations such as Leonard Cheshire, one of the UK’s leading disability charities, have care homes that can help. They also offer short-term respite services, where they take the person you care for on day trips – or sometimes on longer holidays.

You might have other charities that can help locally. And your local council can guide you in finding the support you need.

Family and friends can also help you. They often won’t know how to offer support, or what help is needed. So you will need to reach out to them, and help them understand how they can assist you.

The Benefits of Leaving Work to Care for a Family Member

Leaving work to become a full-time carer is a really individual question.

For some, the pros outweigh the cons; whereas for others it does not. There are many ways to help care for a loved one. With external help from care homes, respite resources or external carers.

However, there are quite a few benefits of becoming a primary caregiver.

• You would know first hand how your loved one was getting on, day and night.
• You would not need to worry about them getting on with someone new.
• The bond that is formed can be one of a lifetime. You get to learn so much about another person, and them with you. If you are caring for an elderly person, they will have so many stories and wisdom to pass on.
• Although it is a challenging job, you will learn patience and wisdom in a manner that many other people won’t.

Before you decide, be sure you look at all your options – including benefits, and what extra help is available. Also, be sure to research the effects of caregiving on the carer, as explained in this post. And really think about whether you can deal with that every day.

On the other hand, remember: there are resources out there to help, such as your local carer groups, the nurses and doctors at your local mental health clinic, financial support and help from your local council or social services.

How do I support a primary carer/ caregiver?

If you have someone close to you that is a carer/ caregiver, don’t wait for them to reach out for help. They might not realise they have friends and family who want to support them.

Do get in touch and offer what you can. Even a few hours of respite can help a caregiver to keep optimal health.

As the carer might not be able to leave their home, you can offer to come over and sit with them to catch up. You can even offer to bring anything they might need, such as medications or shopping.

Helping a caregiver might be becoming a gatekeeper of the person who they are caring for. It might become exhausting emotionally, for the caregiver to continually be updating the outside world about the person they care for. So having one external source can alleviate a lot of stress.

Support for a caregiver could even simply be words of encouragement. By telling them that they are good at being a carer, you boost confidence and lift their spirits.

However, there are a few things you should never say to a carer. They might seem harmless but can be really hurtful to the person who has become a caregiver.

Things like, ‘where have you been?’ or ‘you look exhausted’, ‘you shouldn’t have to sacrifice your life’ or ‘why don’t you just put your loved one in a care home?’. You might think you are helping or expressing care. Still, it is worth taking a moment to think about what you say to a carer, who has thought about their situation in great detail.

What to Do After Being a Carer/ Caregiver? 

Life after being a caregiver can take a lot to get used to, but there are a few things you might want to/ need to do.

Firstly, give yourself time. After being so busy for so long, having lots of free time can often let exhaustion creep up on you – Especially if you are experiencing grief.

Taking a short break away can be a useful reset. Or just take some time to yourself to figure out what you want to do next.

You will need to make sure that you claim the correct benefits or update any changes of circumstances. That will help you avoid any fraud and ensure you are getting the correct help.

After caregiving, you can: go into employment; start volunteering with charities, care homes or respite centres; or start learning a new skill.

The world has opened up to you again, and you can do anything you want now.

Just make sure to look after yourself ????.

Self-Care for Carer/ Caregivers

As a carer, you might not always have a lot of time for yourself. So, here are some quick and easy self-care activities for caregivers.

• Short yoga or meditation. You can use apps such as Headspace or DownDog to tailor practices to your level as well as time. You can also find videos on YouTube
• Face masks/ skincare routines. Taking ten minutes in the morning or evening to go through a skincare routine, put on a mask or jumping in a bath can be very grounding and a reset
• Colouring in/ drawing. That can be a mindless task where you don’t have to think about anything for fifteen minutes and lets you be creative
• Escape into a different world for a little while or use non-fiction to learn about a subject you are interested in
• Playing games/ phone games. Much like colouring or reading, playing games can let you tune out for a little while
• If you are a carer, then you will be busy all the time, looking after your health might mean catching sleep whenever you can

Here is a useful booklet for taking care of yourself as a caregiver.

You could print this out, and go through some of the activities for a little while each day.

Carer/ Caregiving Tips and Hacks to Prevent Back Injuries

Here are some caregiving tips and hacks, to prevent back injuries. And help with your daily caregiving.

One of the most common injuries carers get is back injuries. You must learn how to help your loved one in a way that won’t damage your own health.

When having to lift or move your loved one – whether this is in a shower, from a bed, the toilet or a chair – here are a few things to remember:

• Let them move as much as they can. That will save you from straining yourself unnecessarily. And will help their mobility and independence.
• Are you strong enough to move them? If not, seek support from external help. Or think about getting adaptive furniture or lifts/ hoists.
• Are there any obstacles in your path? Make sure there is nothing you or the person you are helping up can run into. That includes any wet surfaces.
• Clear communication will help your loved one know what is happening.
• Never lift above shoulder height, keep the weight close to your body, bend your knees and straighten your back. Lift smoothly and slowly.

How to Give a Bed Bath to Elderly or Bedbound

There are many reasons why you might need to help your loved one with bathing. They might be bedbound, or as they grow older, they might stop washing. This could be the only thing they can control anymore. Or they could be frightened of falling. Talk to them and see how you can help.

A sponge bath is usually used for people who are bedbound. You can fill two basins, one with warm soapy water and one with hot water.

Use a new cloth for different areas of the body.

Once washed and dried, cover each area as you finish washing, to prevent your loved one getting cold.

Each person might have different limits to what they can do, so talk to your loved one about what you should help with.

Some people might still want some independence, so you can look into adaptive/ bathing aids that can help. Adaptive/ bathing aids such as long-handled sponges, shower seats and grip bars.

How to Assist with Toileting 

Much like bathing, the person you are caring for might have varying levels of needed help when going to the toilet. Discuss with them how much help they need or want. And then implement what you learn.

For example, they might ask for help getting on and off the toilet. A solution for which might be putting in bars beside the toilet to help them up. Or, they might not be able to get on and off at all on their own. In this case, you must be careful of both yourself and the person you are assisting. Do not pull their legs or arms. This can result in damaging them.

Hold on to their trunk and hips to maintain their stability – and remember to bend your knees when lifting. Clear communication will help them. Tell them how close they are to the toilet, or where to place their hands.

Let them use your forearms to lower themselves on to the toilet, if they can.

Carer Support: Allowances and Benefits

As a carer, you are entitled to specific allowances and benefits – as well as help from others.

Caregiver Assessment

The Caregiver Assessment will look at whether you need any help. It might recommend things like:

• someone to take over caring, so you can take a break
• gym membership and exercise classes to relieve stress
• help with taxi fares, if you don’t drive
• help with gardening and housework
• training on how to lift safely
• putting you in touch with local support groups, so you have people to talk to
• advice about benefits for carers

A carer’s assessment is free, and anyone over 18 can ask for one.

Someone from your council, or an organisation your council works with, will ask how you’re coping with caring. That includes how it affects your physical and mental health, work, free time and relationships.

The assessment is usually face-to-face. Some councils can do it over the phone or online. Assessments typically last at least an hour. It’s different from the needs assessment the person you are caring for would go through.

Contact adult social services at your local council and ask for a carer’s assessment. If you’re a parent carer for a child, contact the children with disabilities department. You can call or do it online.

Carers Allowance

How Much is a Careers Allowance?

Carers Allowance You could be eligible to claim £67.25 a week if you care for someone at least 35 hours a week and they get certain benefits such as:

• Personal Independence Payment – daily living component
• Disability Living Allowance – the middle or highest care rate
• Attendance Allowance
• Constant Attendance Allowance at or above the standard maximum rate with an Industrial Injuries Disablement Benefit
• Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension
• Armed Forces Independence Payment

You do not have to be related to, or live with, the person you care for. You do not get paid extra if you care for more than one person. If someone else also cares for the same person as you, only one of you can claim Carer’s Allowance.

There are a few other eligibility rules:

• you’re 16 or over
• you spend at least 35 hours a week caring for someone
• you’ve been in England, Scotland or Wales for at least 2 of the last three years (this does not apply if you’re a refugee or have humanitarian protection status)
• you normally live in England, Scotland or Wales, or you live abroad as a member of the armed forces (you might still be eligible if you’re moving to or already living in an EEA country or Switzerland)
• you’re not in full-time education
• you’re not studying for 21 hours a week or more
• you’re not subject to immigration control
• your earnings are £128 or less a week after tax, National Insurance and expenses

Suppose you are not eligible for the Carers Allowance. In that case, you might be able to claim Carer’s Credit. That helps with any gaps in your National Insurance record.

Carer’s Allowance is usually paid directly into a bank, building society or Post Office card account.

You can claim Carers Allowance for yourself even if you are disabled yourself and receiving benefits. As long as you fit the carers allowance eligibility, you can still claim it. If you claim certain other benefits such as Maternity Allowance, you might not claim Carers Allowance or might receive less.

Carers Allowance and Working

The Carers Allowance is not means-tested. That means it does not take into consideration your income or savings. However, earnings may affect your entitlement.

You are allowed to work alongside claiming a Carers Allowance as long as you earn £128 or less a week.

Your Carers Allowance is a taxable benefit and forms part of your taxable income.

Changes in Circumstance for Caregivers

In the case of any change in circumstance, tell the Department of Work and Pensions (DWP) as soon as possible. The change might increase your payment, and you might miss out on extra money if you tell the DWP late.

You should still tell the DWP if you think a change might reduce your payment – you won’t save money by reporting it later. If you tell the DWP late, you could get paid too much and have to pay your benefits back to the DWP.

If the person you are caring for moves into a hospital or care home, your payments will stop after 28 days. Or if the person you are caring for no longer claims disability benefits, then they will also stop.

You really want to keep on top of any changes in your circumstances; otherwise, you can be charged for fraud. Benefit fraud is a criminal offence, and you can be prosecuted or asked to pay a penalty.

Carers Allowance and Universal Credit

It is possible to claim Universal Credit at the same time as your Carers Allowance. You can get an additional amount if you care for a severely disabled person for at least 35 hours a week. You do not need to receive Carer’s Allowance.

If you make a joint claim, both of you can get a carer’s amount, as long as you are not caring for the same severely disabled person.

Suppose you or your partner get Carer’s Allowance. In that case, your Universal Credit payment will be reduced by £1 for every £1 you receive from Carer’s Allowance.

Claiming benefits for yourself can affect the benefits of the person you are caring for and vice versa. The government website, Citizens Advice Bureau, and the NHS website provide benefit calculators. That helps you see what will work best for you and the person you are caring for.

Carers Allowance Supplement

In Scotland, you can be eligible for the Carers Allowance Supplement. This is a twice-yearly payment of £230.10. To claim the supplement, you must be living in Scotland at a certain date and be claiming Carers Allowance.

The person you are caring for does not have to live in Scotland.

This supplement will not affect your other benefits or tax credits, and you do not have to notify the DWP. Your partners’ income will also not affect it. However, it might affect your tax depending on your overall income tax within the year.

Carers Leave

In March 2020, the Government began a consultation into giving unpaid carers the new right to a week of leave. Due to Covid-19, they have extended the consultation period to allow time for people to respond.

That is a useful resource for the 5.4 million unpaid carers across the UK.

Carers Benefits

Carer Premium

Carer Premium is an allowance you get on top of some benefits. You are eligible if you already get a benefit, such as Income Support or Housing Benefit.

Ask about it at your local Jobcentre Plus or Jobs and Benefits Office

Disability Living Allowance for children

This benefit can be between £22.65 and £145.35 a week. You will be eligible if you are the parent carer of a disabled child.

Discount for Carers

Discount for Carers They aim to give discounts and offers to carers.

That is useful as you might not be earning as much money being a carer. It is free to become a Discount for Carers member. You can get discounts on holidays, restaurants, mobile phones, clothing and others.

These are some of the discounts you might be able to get from them:

1. Some local carer services have discount cards for carers registered with them. This allows the carers to get money off at local businesses.
2. Your local council may offer discounts for leisure activities, such as swimming.  Check what proof you need to take with you before you go.
3. CarerSmartoffers benefits and discounts to carers and people with care needs.
4. Cinema CEAcard is an annual card you pay for. It gets a carer a free ticket, when they accompany the person they care for. 
5. Max cardgives free admission to attractions for looked after children, children with complex needs, their friends and family.
6. Merlin annual passhas a complimentary pass for carers.
7. National Trust has an Essential Companion cardthat allows you free entry if you are with the person you care for. 

You may also be able to get discounts when travelling on buses and trains, or when you go on holiday. 

Young Carers

You are classed as a young carer if you are under 18 and are caring for someone. Usually, this will be a sibling or a parent/grandparent. You might be doing extra task around the house such as cooking or cleaning. Or you might be doing more physical tasks if you are caring for someone with a disability or chronic illness. That can also mean giving emotional support to your family.

If you find yourself having to take on more caring tasks or become a carer overnight, speak to your friends and family. You should not have to carry the full task of caregiving alone.

You can also reach out to your teachers if you are still at school. They can help find you any help you might need. This can include giving extra time for schoolwork or exams, and helping you reach out to the local council for help in your caregiving tasks.

As a young person, you should not be doing the same level of caregiving as an adult might. You might want to give your all, but this can affect your life as a young person and affect your schoolwork.

Every disabled adult is entitled to help from their local council, so you can work with them to help you care for your loved one. You are not alone, and there is help for you.

It is possible to get a young carer needs assessment with your local council or social worker. This will them to help you wherever you need. This could be to get extra help in caring for the person you are currently looking after. Or, of you are over 16 and not in full-time education, you might be entitled to claim Carers Allowance or other benefits.

Other Places that can Help or Give Advice

• Carers UKhelpline on 0808 808 777
• Carers Direct helpline on 0300 123 1053
• Age UKon freephone 0800 169 6565
• Citizens Adviceon 03444 111 444
• Gingerbread(for single parents) on 0808 802 0925
• Family Rights Groupon freephone 0808 801 0366

Conclusion

Remember that you are not alone. Almost seven million paid carers, and 13.6 million unpaid carers in the UK go through the same or similar situations to yourself. Make use of the resources available to you. Charities and organisations which specialise in caregiving, who can help you.