I write about living with pain or illness all the time, but today I want to focus on a group of people who play a valuable role in the community – carers. To be specific, family carers. Many chronic illness sufferers rely on a family member to care for them. Very often, what that family member does, goes unnoticed. But it shouldn’t. We should all notice. Family carers need much more support and gratitude than they receive.
Some people might just need help with putting on their shoes, picking up groceries or making meals, but many people couldn’t function without their carers. Those family carers give their time and energy out of love. They give up so much in order to take care of a member of their family.
Family Carers Deserve our Support and Gratitude
Spouses, parents, sons, daughters or siblings often care for their sick, disabled or elderly relatives. They don’t care for them to make money. They do it because they love the person. They put their lives on hold so that they can take care of them. But they get little in the way of support.
They don’t do it for recognition or for thanks. But they certainly deserve it. We should all be grateful to family carers because many people couldn’t cope without them.
Family Carers Give Physical and Emotional Care
The time spent caring obviously varies depending on the needs of the person. The carer might need to help the person get in and out of bed, help them to dress and undress and help them with bathing or showering. They might cook for them, collect shopping and accompany them to appointments. Or they might just need to be there to supervise them and ensure that they are safe.
However, in some cases, much more physical help is needed.
A carer might need to feed the patient and help with medication. They might help the patient with toilet needs through the night as well as during the day. There might be incontinence issues, meaning that clothing and bedding need changed and laundered regularly.
Many patients are unable to fight for the correct medical care or apply for the benefits which they are entitled to. Family carers often fight those battles for them.
But family carers do more than care for the physical needs of the patient. They take on the emotional burdens too. They try to comfort and calm the patient. They listen and try to help them cope. The patient’s pain becomes the carer’s pain. The patient’s worries and fears become the carer’s worries and fears.
Caring can be Demanding and Draining
The carer will no doubt have their own worries and fears. They worry about the person’s health. They often have to witness the person’s health spiralling downwards. That person is someone they love, but yet, they have to put their own feelings and emotions aside and focus on caring for them.
Caring can be a physically demanding and emotionally draining job. It can be frustrating and exhausting. The carer often feels guilty because they cannot help the person enough. They can feel lonely and isolated because they devote all their time and energy to looking after the person.
When the carer is a family member, caring doesn’t end after a five-hour shift. Some may be actively caring for five hours a day, but others may work for ten or fifteen hours every day. Carers are often lucky if they can sleep for three or four hours at night, because they may be needed. In many cases, they are normally on call for 24 hours a day, seven days a week because there is no one else available to take over their role.
They Care out of Love
Why would anyone be a family carer?
Because they love the person, that’s why.
Carer’s Allowance
Family carers are often unpaid but here, in the UK, a carer can receive a benefit called Carer’s Allowance if they care for someone for more than 35 hours per week.
As a way of saying thank you to family carers, the government gives them £66.15 per week in Carer’s Allowance.
Try to digest that figure for a minute. £66.15 for working a minimum of 35 hours per week.
This means that if they care for their relative for 35 hours a week, they receive an hourly rate of £1.89. But many carers need to work more than that depending on the needs of the patient. If they work more than 35 hours, they will still only get paid £66.15. If, for example, they worked fifty hours a week, the hourly rate would be £1.32.
Compare that to the UK’s National Living Wage of £8.21 per hour. Does it seem like the government is supporting family carers? Are they really showing gratitude?
Working Conditions of a Family Carer
Family carers receive no training, have no paid holidays and no paid sick leave. They don’t get paid overtime, nor do they get paid for working unsocial hours. They’re given a straight amount every week of £66.15, no matter how many hours they’ve worked. In what other profession would someone take on these conditions?
Family carers don’t do it for money. But if the government wants to give a token gesture to say thank you, surely they could do better than this?
Who Cares for the Carers?
Family carers often shoulder large burdens and very often they struggle. Patients get support, but do the carers? Who cares about them?
How many doctors take the time to ask the carers how they are or how they’re coping. “Are you needing a break?” is a question they should ask, but they don’t because if the carer does need a break, who will look after the patient?
Extra Help
Extra help is available in the form of equipment and paid care, but it’s not automatically given. The patient and family carer need to seek it out then be assessed by the local council authorities. In many cases, they need to fight for that help.
There are supposed to be plans in place so that carers can have respite. But if it’s available, it is often up to the carer and the patient to make the arrangements. Nothing is made easy for them.
The Country Relies on Family Carers
We rely on family carers. The whole country relies on them.
They don’t get paid what they’re worth, nor do they get the support they need. They often need to fight tooth and nail for help because nothing is handed to them on a plate.
Family carers are worth their weight in gold to the person who is needing to be looked after. They are also worth their weight in gold to the government because if they didn’t look after the person, who would? An already cash-strapped NHS? Social services with their limited budgets? Or would people be left to suffer without getting the care they need?
Family Carers Deserve Our Gratitude
Family carers need much more support and gratitude than they receive at present. They are not looking for thanks or recognition, but they certainly deserve it. Those people play such a valuable role in the community and deserve much more support and gratitude for all they do.
Carers UK
If you are a family carer, please look at the Carers UK website as they will hopefully be able give you extra support if you need it.
This is such a poignant post, Liz. Carers can help in small ways or huge ways, and that input and support is still incredibly valuable. Most help unpaid, but I’m glad you noted the Carer’s Allowance as I imagine there are a lot of carers out there for whom this benefit is worth investigating.
“But family carers do more than care for the physical needs of the patient” < I'm really glad you mentioned the emotional support, too. This is priceless.
Caz xx
You are absolutely right. Those who help take care of us need to feel heard and supported. Great post!
Very similar here in the US!
I couldn’t agree more on the fact that carers don’t get enough respect. Often times carers are putting their own lives on hold to care for a loved one. My grandmother had a stroke when I was younger and my grandfather refused to bring someone in to help her day to day. It wasn’t until I was older and my grandfather couldn’t do as much as he used to that he allowed others tot start helping. We realized at that point how much he had done over the years and how hard it was. It is a difficult job often done by the most caring people I have ever seen.
Family carers are the unsung hero to those they help. Often, family members sacrifice in order to take care of a relative and theres usually little thanks or expressed appreciation. It is a draining task that people don’t realize how draining it really is.
This is such an important article! Family carers are essential in today’s day just as they were hundreds of ago.
My mom looked after both of her parents when they were all in final stages of their sicknesses.
I saw the hard work and dedication Mom put in to make sure they were comfortable and being well cared for. It is such an emotionally draining job but like you said, they do it because they love them.
Thanks for sharing!
Carers are amazing people and deserve more recognition for the work they do. Hopefully the carers allowance will be increased to better reflect the essential role that they play in the community.
This is such an important post. Important because family carers never have had any recognition for the enormous sacrifices they continue to make each day. It is often assumed by some that it is just ‘what is expected’ simply because they love the person or that it should be a family duty. As a society we have to do better and the first step must be to recognise the issue properly in the first place. By publishing this and encouraging others to likewise spread the awareness is a great thing and will hopefully lead to meaningful change on day.
Carers are hard worker. I have a friend who is a care worker and the support she gets is very slim. She is very tired all the time. So Yes you are right. Carers must be supported.
Great post, very inspiring and giving a lot of thoughts of family career options
I love your point about the system’s reliance on family caregivers. Like you said, paying that small amount for something that can be a very intensive job is absolutely ridiculous. When you look at what a professional caregiver costs and what’s then saved because of it, well… It just doesn’t make sense. In Canada, too, there is a reliance of on the family being there and providing a fair bit of the care, yet there is no acknowledgement of it. And that’s one of the tricky parts of this. Because that’s when it gets in the way of relationship between you and somebody who might be helping you. And thus the cycle of despair, burnout, and maybe even abuse can start.
Hello, Liz.
Thank you for addressing this topic and making people (including myself) realize how much family carers have to give up in order to support and comfort their loved ones, and how much their 24/7 work causes the physical and emotional drain to themselves.
I’m a carer for my adult son. He is blind and autistic.
I consider my job as a carer pretty simple comparing to other caregivers’ because it doesn’t require much physical work: my son is very mobile, does a lot of physical exercises, including workout in a gym, acrobatics on a trapeze, dancing tango and more. He is also a professional pianist (graduated Berklee College of Music). At the same time, he requires a lot of supervision, some easy physical help with personal hygiene, dressing, cooking, housekeeping, and help with navigation, social engagement and communication. I drive him to his training classes, music gigs, appointments. There had been several years when his epileptic seizures were not under control, which caused a lot of emotional pain and required more physical assistance.
I had to quit my well-paid occupation of 20 years, to be home and available for him.
Reading your post, I realized that I probably underappreciated my own involvement and sacrifices (for a lack of a better word) I had to make. He is my son, and I don’t see how I could have done it differently. Even the word “sacrifices” doesn’t sound right in application to my own son. Love drives family carers and gives them strength and energy. Unfortunately, our love for our relatives in need makes it possible for the government to underappreciate our efforts and get away with these ridiculously low rewards.
I totally agree that the government should be grateful for the work that family carers do. Here in the US, we seem to be a bit better compensated than in the UK, but still, my hourly pay comes below the official minimum wage in my state.
Warm regards,
~ Julia
Family carers are unsung heroes caring for many. Connecting carers with resources of support and respite is essential to their long term well being. Without these resources they will burn out and no longer be able to support their loved one.
We need to support and help people like them who do so much for their job and get so little recognition in return. Great read and it’s nice that you are raising awareness about this issue.