I can’t turn off appliances to lower my electricity bill – they keep my son alive

The moment I clicked on my combined electricity bill last week and saw it was £230 a month – an increase of £85 – I was shocked.

It made me physically sick from the stress.

I am a single mother with Apert Syndrome taking care of my wonderful 16 year old son Elijah who has complex health and medical needs. I am one of 6.5 million carers in the UK.

But I also have a lot of trouble with the crisis of the cost of living. I’ve thought of all sorts of austerity measures, but none are working for my family.

In a recent report, Carers UK found that the number of carers unable to pay their energy bills has doubled since last year. Every sixth caring family member is in debt.

I am one of those who fight. Rising gas and electricity bills are only part of the picture – when we add groceries, travel, household goods and subscriptions to the various things we need to live, it all adds up.

Apert syndrome is a rare genetic condition that Elia and I were born with. People with Apert syndrome can have significant deformities of the skull, face, hands, and feet and may require numerous surgeries to correct them.

Also as a baby, Elijah suffered a catastrophic brain injury after routine surgery, which led to a variety of health problems, including epilepsy, scoliosis, and fluid on the brain.

This prevents me from working as I lead the team of 15 caregivers that Elia needs. His health is so unpredictable – at the time of writing this is his fourth visit to the ER this year. This is the reality for countless caregivers like me.

Even before this livelihood crisis, Elia was in great need of medical care.

He receives two-to-one care, which means four adults are in the house every 24 hours.

In addition, we have many other people who support Elijah every week, such as: B. his physiotherapist, paramedic, doctor and social worker.

In addition, there are often meetings – at our home – about how things are going, how the team can improve, and there is training in the use of the equipment and handling and moving Elia, basic life support training and postural care.

Elijah needs a lot of stuff to keep an eye on him and keep him alive, such as his fan, his bed that tilts, raises and lowers, hoists and machines that help him go to the bathroom. Everything works on electricity.

If Elijah couldn’t use these machines, he would die. They are crucial in keeping him alive and maintaining a good quality of life. I have no choice but to pay all expenses necessary to cover our assembly bills.

In addition, I have to use the washer and dryer every day because his linens have to be changed daily.

Because my home is also a workplace for the caregivers, I buy things like hand soap, toilet paper, cleaning and laundry detergents, tea and coffee in bulk – everything is getting more and more expensive.

Added to this are the extra costs for the caretakers who use electricity day and night – from television, charging mobile phones and preparing meals.

Groceries, living expenses, gas and travel expenses – it all adds up.

My expenses also cover the wear and tear in our home from so many people using the space. The money I have to spend on all this is dwindling. What about my social life, holidays and new clothes? Well, they were scarce – now they’re gone.

The government has no idea how these rising costs are really affecting healthcare providers and their families.

The pandemic has hit us hard and now this livelihood crisis is pushing many to their limits.

Sometimes I felt paralyzed and wondered how I was going to cover all the expenses. At the moment the benefits we receive are sufficient but scarce.

I am much more aware of the amount of electricity and gas used in my home and this causes daily anxiety as there is not much we can do to reduce or save.

However, I have no choice not to turn on my heating. I can’t possibly have a cool home for Elijah – who isn’t mobile himself – or the people whose job it is to take care of him.

I am so thankful that Elijah turned 16 and for the support we receive – financially, from his personal health budget and physically, from the caregivers and nurses. But I can’t deny it was stressful. Our two bed bungalow is too small for us and we have nowhere to rest. His health problems keep him busy every day.

We need more money, but one-time payments for living expenses will not solve the problems in the long run. We need a living wage and emotional support.

That’s why I started my own organization, Carers Collective, which revolves around coaching caregivers to calm, control and keep them from being overwhelmed and stressed.

However, entertaining and supporting each other is only part of the puzzle.

No amount of being there for each other can take away our money worries.