Hiya! My name is Alexandra and I am an unpaid carer. A few things to be aware of in this blog: I will be expressing my opinions about the role of an unpaid carer, sharing a bit of my lived experience and the realities of caring. At some points this may seem sad, happy, angry, defensive, outraged, but overall honest. Being an unpaid carer is fucking hard, (oh forgot to mention sweary) its isolating, it affects our physical and mental health and apparently cuts ten years off you life! Deep joy eh.

An Unpaid Carer

What’s one of those? I hear you ask, good question! According to the charity Carers UK; ‘An unpaid carer is someone who provides unpaid care and support to a family member, partner, friend or neighbour who is disabled, has an illness or long-term condition, or who needs extra help as they get older. This support could be a few hours a week or round the clock care.’

There are millions of us in the UK, those we know of and those we don’t, in the latest census in 2021 – 5.8 million, aged from 5 years old upwards. In reality, the figure is probably much higher, because some people don’t recognise or know they are providing unpaid care, and some cultures consider the care they are providing is family responsibilities.

If you find yourself here reading this blog as a professional working with/around unpaid carers, or as someone who may think they are one, or maybe you arrived here because of the title of the blog (lol) you can find out more in Carers UK report Facts about Carers – updated March 2025 carersuk.org

If you have stuck with me this far, feel free to have a read of my other posts, it’s worth noting, that I will always refer to other organisations such as Carers UK, Carers Trust, Young Carers for places to gain advice and guidance.

Rewarding?

We are often told by others (who don’t do unpaid care, but may work with unpaid carers) that its a difficult role but also rewarding. If you read any information leaflet, documents for carers, news stories, or publications, you will see this mentioned time and time again. In my opinion rewarding is not the correct terminology, I don’t find it rewarding, some may, but not me. It is definitely not financially rewarding.

I find it frustrating, when people say it is, what I do find is that I fiercely love and value the person that I care for. I would fight to the death for them, I advocate for them, I stand up for them constantly when I can see that they are being ignored by medical professionals, and are treated unjustly by anyone, because they are my priority. I guess I get some kind of positive feeling when I know I have succeeded in winning a battle for them but rewarding it is not.

What happens to them, happens to you too

If you’re already an unpaid carer, you will already know this, and the stress that it can bring to your life as well as your cared for person.

So there are many things that happen to your cared for person that are out of theirs and your control, and when these things happen they are uber stressful.

You’re used to your day to day care and managing everything that involves, and then you receive a letter from a medical professional, an unexpected appointment, a DWP or PIP review, a reminder their eyes need testing, their dentist appointment is due, they need blood tests, blood pressure tests and so on…..

Sounds simple doesn’t it – we all have these things that we have to go to and manage. Now imagine your cared for person has dementia, needs a solid routine, or they are a child with a life limiting illness, they may be in a wheelchair, blind, deaf, have ADHD, Autism or both, mental health diagnoses, MND, MS, and anxiety and depression on top of all of those. All of these conditions need planning and consideration before you attend anything.

You have to plan your day or week around these things, are the appointments in the morning or afternoon? Where are they? Will you have enough oxygen for the journey and the appointment? Where will you park? What time do you need to leave? Will you be able to get them in to the room, is it wide enough, whats the lighting like, the seating, the reception staff, the medical staff, will they be aware of the fact they have a disability and that you are their unpaid carer and need to support them? Speak for them, ask their questions, listen to the answers and try to remember what was said, the outcome, the next appointment.

And trust and believe how stressful it is dealing with DWP on their behalf obtaining evidence from medical professionals, GP’s, pharmacists, nursing staff, then liaising with whoever is helping to complete any forms, e.g. Citizens advice or any charity that supports you both.

Poverty with a capital P

Oh yeh baby, poverty incoming when you are an unpaid carer, on your own and are unable to work, or had to give up work to maintain your sanity, your health (lol) and your mental health (even bigger lols).

I left school with no qualifications and later put myself through Uni to get my degree and my Post Grad degree. I earned a very good income and not to boast – took home nearly £3k a month.

Then when my loved one was in hospital for 9 months, they came home to live with me. I won’t go into details of their health here but suffice to say, they came home, I tried to work and provide care and support for them. But anyone who does unpaid care will tell you, its extremely stressful trying to manage a job, the unpredictability of caring and medical appointments, emergencies, that can and do happen.

Something happened which caused us both stress and I had to take a year off on sick leave to carry on dealing with that and caring. Luckily I had full pay then have pay then no pay during the year. As my job was uber stressy, with big responsibilities I could not cope with both. Eventually I had to leave work and give up my career, identity and income.

Now my monthly income is about £1,500 a month, sounds good? yes? no? Not when you have mortgage, council tax, gas, water, electric, broadband and everything else. My fuel costs are £150.00 a month as I use my car as part of caring for my loved one. So all in all monthly I am in deficit.

How I survive with no money

Ok so let me tell you how it is, as an unpaid carer you can claim things like council tax discount, National Insurance credit. For financial information and advice, support I can’t recommend Carers UK enough. Follow this link for more information on getting help https://www.carersuk.org/help-and-advice/financial-support/

I can fit in voluntary work around my caring if I am clever with my time, for these I get paid in Vouchers like Love to Shop, Time Tempos, Sainsbury, Amazon and others. These are usually what charities will give someone as they don’t affect any benefits you are on. I couldn’t survive without them.

As I am on carers allowance any earnings I have over £204 a week will stop me getting it. Carers allowance is currently £86.45 a week. Again that might sound a lot, realistically it isn’t. I care for about 115 hours a week, from the moment I wake up to the moment I go to sleep. That £86.45 a week roughly works out for me as £0.07pence and hour. Its an insult really.

In Sweden they pay a weekly wage to unpaid carers equivalent to a 35 hour week. Its better than the UK but what if you care 24/7. That’s impossible I hear you shout! Believe me I know people who do that without much sleep.

Another great place to find information on what you are entitled to and also have a benefit calculator is Turn2Us https://benefits-calculator.turn2us.org.uk/