The impact on carers

Support for those caring for someone with cardiomyopathy.

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  • A carer is someone who cares for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.
  • Not everyone who cares for someone with cardiomyopathy will consider themselves a carer.
  • Here we look at the impact that caring for someone can have on a carer.

What is a ‘carer’?

A carer is ‘anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support’.
Definition:  Carers Support Centre

‘Carers’ are different from ‘care workers’ (sometimes referred to as ‘carers’). Care workers are employed (paid) to provide care for someone, for example, people working in residential or care homes or providing social care support.

Who is a ‘carer’?

There are around 6.5 million carers in the UK. A carer is someone who provides care for another person. This might be their parent, a partner, child or a friend. But it does not have to be someone they are related to, and they don’t have to be living with the person. Carers can also be any age. Around 700,000 carers in the UK are under the age of 18.
(Statistics: Carers UK Website)

What ‘care’ do carers give?

What ‘care’ means will vary depending on the needs of the person being cared for, and what the carer is able to provide. The following are some examples.

  • Physical help - such as getting dressed or moving around.
  • Medical help to manage their condition or treatment - such as planning and managing their medications, or helping them monitor their symptoms such as breathlessness or activity levels.
  • Practical help with daily living - such as arranging transport or driving them, going with them to appointments, helping with social or leisure activities, or helping with household tasks.
  • Help with daily living such as dressing and washing, help with finances, helping to manage activities.
  • Emotional support - such as supporting them with the emotional impact of living with a condition, and helping them to self-manage their condition.

These are just some examples, and there may be many other ways that someone provides care and support.

Some caring activities may be fairly constant, depending on the needs of the individual being cared for. But, as the symptoms of cardiomyopathy can change over time, and people may have times of being well and times of being unwell, the need for care may also change or fluctuate. Here, the need for care can be unpredictable, and caring needs might come up unexpectedly.

Are you a ‘carer’?

Not everyone who cares and supports someone with cardiomyopathy considers themselves to be a carer. For many people, how they care and support someone might feel no different to how they would expect to care for a parent, partner, child or friend, and they may consider this a normal part of that relationship.

Sometimes it can be difficult to see when a ‘normal’ relationship becomes a ‘caring’ relationship. For some, the role of carer can develop slowly over time, the person may not see their role changing, and it can be hard to see when they started to be a ‘carer’. Suddenly, they may feel that how they are caring for someone is more than, or different from, what you might normally expect in a relationship. For example, a parent would expect to provide care and support to a young child, but if they continue to provide that level of support, or perhaps more support, as their child gets older, they may recognise that they are now a carer for their child.

Why it can help to identify yourself as a carer

Some people may be uncomfortable identifying themselves as a carer. Others might recognise themselves in the role more easily. While this is personal choice, there are some reasons why it can be helpful to recognise when you are a carer.

There are various sources of help and support available for carers. This might include practical help, carers assessments, carers allowance, and help with work. There are also sources of psychological support and counselling, peer support and self-management courses. 

See 'Practical help for carers'.

What is the impact on carers?

Caring can be a very rewarding and enjoyable experience. Carers may feel valued and helpful, take on the role willingly, and want to be able to care for their loved ones. However, being a carer can also have an huge impact on the carer themselves.

“I didn’t want to focus on me when I didn’t have the serious condition.”

When someone is diagnosed with a disability or medical condition, it is natural that there is a focus on them: helping them to deal with a diagnosis, managing their condition and the impact that a long-term condition often has. However, the diagnosis can often have a big impact on those around that person: their family and friends. Over time, it can feel like all the focus is on the individual with the condition, and that the impact on the carer is not recognised. Other people may ask the carer how the individual is, without thinking to ask the carer how they are. It can be easy to assume that a carer is coping, or that the carer doesn’t need any help and support themselves.

“As a carer you sometimes feel the person who has the illness is looked after more than you. You’re there for them but the professionals seem to forget you.”

Taking on a caring role is something that most people didn’t plan for or expect. It can be something that starts gradually, the responsibility increases over time, and it can be hard to see when the caring role begins. It is sometimes seen as something that is just ‘expected’ in the role of parent, partner, child or friend. However, this change in relationship can be challenging, and is not always easy or welcomed.

“It’s the family that kind of suffer… having to care for me and do full time work at the same time was incredibly stressful.” (Person with cardiomyopathy)

Being a carer can significantly change a carer's life, both practically and physically. Some carers change or give up work to be able to provide care and, if the person they care for is not able to work, this can lead to financial hardship. They may become the only driver in the household. They might have to do more practical tasks around the home. They may become responsible for managing paperwork, or organising the household. They might also find that they have very little time for themselves, to do what they want to do, and it can feel like they have lost their identity.

“I’ve just gone back to work… I’m getting something out of life for myself and it’s not just all centred around my husband, because it was before.”

“If you're looking after someone, you can't be ill too. You just carry on and don't admit your own issues.”

Being a carer can impact on the physical health of the carer themselves. Carers are more likely to have poor health than people without caring responsibilities. (Reference: Carers UK (opens new window).)

“I think you just feel you have to cope with it. It feels selfish to be thinking about yourself. You think you are coping and then things fall apart, but you have to be strong for everyone else.”

The emotional impact of being a carer can be significant. Some carers feel overlooked and overwhelmed, that they don’t have time for themselves as they always have to put the person they care for first, and that no one understands. This can lead to feeling resentful which, in turn, can lead to feeling guilty for feeling this way. It can be a difficult, vicious circle, and very isolating. Caring can affect a carer's emotional wellbeing, and they are more likely to experience stress, anxiety and depression than non-carers.

“My son would think it was his fault that his condition affected me. I think this prevents me from asking for help with my own anxiety.”

Carers may find it difficult to talk about the affect of being a carer, and how they feel about this. They may not want to share this with the person they care for, or with close family. They may feel that they don’t have anyone to share this with, or that other people may not understand. Some feel that they ‘should be able to cope’, and ‘shouldn’t’ focus on their own needs. They may feel that they have had little choice about taking on a caring role, but equally feel guilty for considering their own needs, or that they might be judged if they talk about their feelings. These are natural and common feelings and concerns.

“I find it very difficult to talk about.”

“…… but I think they [healthcare professionals] forget you are part of that person as well. You’ve got their day-to-day health to think about and you are the one who sees them when they are not well… so just maybe now and again you could be taken away from the patient and just asked ‘Are you  OK? Do you need somebody to talk to?’”

The quotes above are from family, friends and carers of people with cardiomyopathy, who have shared their experiences with us.

© Cardiomyopathy UK. April 2017.