Carers with full-time jobs share their experiences

Ahead of next week’s Carers Week 2023, two carers share their experiences of holding down a full-time job while also having caring responsibilities for a loved one, laying bare their mental and physical challenges at both work and home.

The aim of Carers Week is to highlight the important roles carers have in our communities, and to help people who don’t think of themselves as having caring responsibilities to identify as carers and access much-needed support.

According to the 2021 Census 8.8% of Essex residents provide some form of unpaid care, with Tendring recording the highest number of residents reporting any unpaid care in Essex at 15,709, with Colchester at 14,880 residents. Across Suffolk there are an estimated 65,000 carers. 

During this week the work of organisations including Carers First and Suffolk Family Carers, which provide advice and signposting for carers, is acknowledged as having a vital role in supporting those in caring roles.

Sophie Martin, who lives In Suffolk and works for the NHS, says: “I have three children, each of whom is unique, and I love dearly. My five-year-old son is autistic, has high care and support needs, is broadly non-verbal and is continuously sensory seeking. This means he can be very physically challenging.

“Being his carer is relentless. It is consuming and overwhelming and yet it’s just one part of my life. Going to work too is a financial necessity, and the combination means we are constantly spinning plates and hovering close to physical and mental burnout.

“Days have an early start, sometimes at 4am. We then have breakfast. This has to be supervised because food goes everywhere, or it can suddenly be the wrong food or a top up is required. Dressing is a tricky transition, with lots of sensory challenges. Leaving the house for school can take us around 45 minutes of gentle well-rehearsed discussion and preparation. Because my son is mostly non-verbal his only real way to communicate is to run away, fight us or make very loud noises.

“And then for a few hours he is safe and with someone else. It’s the only respite we get. No one else is able to look after him, he is too much for friends or family to care for. We have not found support or services for him outside of school. So, this is it, our down time…. is when we work.

“At 3.15 school finishes and he is collected. No after school provision for him, childcare or clubs. He comes back home immediately. Often, he is overstimulated and exhausted from the day so he spends hours trying to regulate and calm down. For him this means running back and forth literally bouncing off the walls, or round and round in circles or running into the sofa or bouncing on the trampoline followed by prolonged periods of watching his ipad.

“For me, coming to work is my respite and in my own workplace I am very fortunate in having fantastic colleagues. Most people who know me know about my son.

“But some people may be less up front. They may not know how to tell their colleagues about what they are doing at home or have ever been asked at work if they are a carer, what their caring responsibilities entail or how that might impact on their work.

“In my own workplace my appraisals have not included a section on how I can be supported as a carer, and this is something I would urge all employers to consider actioning.

“Getting asked at the start of each day on how my night has been or what’s today been like so far can be hugely comforting and beneficial and it would be great if the many challenges of being a carer could be more openly discussed in the workplace and what support could be best offered.

“Most people go home after work and get some rest or recuperation from the day. They switch off, maybe relax in front of the TV or go for a run. I haven’t sat on the sofa and watched TV since Christmas. 

“For people with caring responsibilities there is no rest, no relaxation, no down time. They do not get time after work to wind down. So, colleagues need to be aware that they may still be carrying the stress and burden of weeks of work that they have not been able to release.

“I urge managers to know more about their workplace policies on carers. Most managers know the annual leave policies or sickness policies for their organisations, some may know their maternity policies. But how many know what carers are entitled to, or how they can support carers in their team or what the policies say about carers?

“I love my son and all three of my children. Life is certainly challenging as carer and employee, and I do hope that employers will begin to better recognise how they can support those with caring responsibilities.”

Gillian Mountague, also from Suffolk, shares her experiences, saying: “Up until 18 months ago I was a carer for my late husband, Jon.  He was on the brink of retirement from a successful hotel management career when we got the news he had Parkinson’s Disease.  He was kind and happy man (most of the time!), with a wicked and very dry sense of humour.  He could floor me with any of his ‘one-liners’.

“Over the next few years, his condition declined dramatically and we were faced with many challenges, and diagnoses of several additional conditions.  The challenges were many – not only understanding what was going on with him, with his muscles and with his brain, but on a practical level, co-ordinating and attending medical appointments and his ongoing care needs, but also trying to help him have some sort of social life, to attend his beloved choir and for him to continue playing the music that he loved. 

“This all became an increasing challenge whilst I continued to work full time for the NHS.

“Interestingly, very few people at work knew what was going on, apart from my immediate team, and with hindsight, I probably should have shared this with more colleagues. I realised that the thing that was most important to me was to keep working, whilst ensuring Jon was safe when I was away. That was an element of my own respite.

“My line managers were fabulous. All were incredibly understanding and gave me time off when I needed it to attend appointments or just to get things sorted.  There were several occasions that I had to drop everything and deal with a crisis or hospital admission, and that was OK from a work point of view.  I could work more flexibly, I worked from home a bit and sometimes started early or worked a bit late.

“My advice for working carers, with an element of hindsight, is ask for help when you need it.  You don’t have to do everything on your own. Find a way of creating some time for yourself if you can. Try to understand what is important to you, which will give you some resilience to continue your caring role.  For me, it was work and doing a few fitness classes. Trust colleagues to have your best interests at heart. And for non-carers, ask colleagues who are caring if they are OK.  Not just is their loved one OK.  Sometimes as a carer you want to talk about it, but don’t know how start the conversation.

“Sadly, Jon died in November 2021. He leaves a fabulous legacy of incredible memories.  Hopefully he felt cared for and safe until the end.”

Hayley Hancock, deputy CEO of Suffolk Family Carers, said:

“With almost 2.4 million family carers across the UK also being in employment, Sophie and Gillian’s stories exemplify the challenges each and every one of these individuals faces every day, balancing the needs of their caring role with work commitments. With over 6000 people becoming family carers each week it is vital that we recognise the important role they play in easing the burden on our frontline healthcare services.

“This Carers Week I hope all parts of Suffolk – family and friends, employers, businesses, schools, health and care services – do their bit to recognise and support family carers in their communities.”

You can read some further carers stories at Carers First.