The plight of unpaid carers is well documented. While many choose to provide unpaid care to loved ones, it can have a significant impact on finances, health, wellbeing and employment prospects, among other things. The most recent stats suggest that there are 5.8 million unpaid carers in the UK, according to charity Carers UK.
What compounds the issue is that more carers report having a disability or a long-term health condition (60 per cent). This can be contributed to: an aging population (55 per cent of older unpaid carers live with a long-term illness or disability); experiencing injury while caring (27 per cent); but also existing conditions getting worse due to delaying medical help because of responsibilities (44 per cent).
In the State of Caring 2023 report by Carers UK, one carer said: “I have an auto immune condition, which prior to my caring role becoming full time, I had under control, took my medication and managed my symptoms with a good diet. Since my caring role, my symptoms have worsened, I regularly forget to take my own medication and my diet is inconsistent. Added to this my sleep is very poor, which has a knock-on effect with my condition.” Another carer added: “I myself have M.E. but I have to largely ignore this due to caring pressures. Hence my condition gets worse.”
So, if you’re an unpaid carer with a disability, who cares for you and what support is available?
Financial support
Carer’s Allowance is the main benefit for those who spend at least 35 hours a week caring. If you live in Scotland, you can now apply for a similar benefit called Carer Support Payment instead.
If you’re a carer with an illness or disability, you can claim PIP without it affecting your Carer's Allowance. Emily Holzhausen CBE, Director of Policy and Public Affairs at Carers UK, adds: “while there's no age limit for claiming, if you're already receiving your State Pension, you can't claim the full Carer's Allowance. However, applying may still be worthwhile, as you could be entitled to an ‘underlying entitlement’, which could increase other means-tested benefits or make you eligible for new ones, such as Pension Credit. If you're on a low income or receiving certain benefits, you might also get discounts on health and care costs.”
Flexible working
According to the 2023 Carers UK study, carers say paid employment would improve their wellbeing, but managing work and care can be challenging, so it’s important to “find out about your rights and strike the right balance”, says Emily.
Your employer may offer up to one week of unpaid carers leave and/or you may be able to request flexible working arrangements.
Emily advises: “Sometimes contractual rights can be more generous than your statutory rights, so it's worth looking into your terms of employment or policies at work to see if they offer any benefits.
“If you're going for a job interview, find out what policies employers have to support carers. Are they part of a scheme like Employers for Carers? [this supports employers to build a positive and inclusive workplace for staff who are, or will become, carers].”
How much you earn won’t affect disability benefits such as PIP – you can work part-time or full-time and still claim PIP.
Looking after yourself
The responsibilities of caring can make you more susceptible to stress and depression, particularly if you find yourself isolated or socially cut off from others.
Emily suggests what symptoms to look out for: “anxiety, racing thoughts, anger, depression, lack of appetite, sleeplessness, crying often, tiredness and difficulty concentrating. Physical symptoms can include cramps, muscle spasms, chest pains, dizziness, restlessness, nervous twitches and breathlessness.”
Aside from speaking to your local GP for a referral, some local carers’ organisations offer counselling. Check to see what’s near to you. Many local organisations and councils also run emergency card schemes for carers, whereby primary caregivers register their care responsibilities with local authorities so if they experience a sudden illness and are hospitalised, an emergency plan can be activated to ensure the person they care for receives necessary support. And if you need your medication picked up, or looking for local transport schemes, check out Carers UK’s information and advice pages.
Take a break
Taking care of yourself and finding time to relax is important both for you and the person you care for.
58 per cent of carers agree that taking a break would improve their wellbeing, but finding the time can be tough. Organisations like Holiday Homes Trust and Leonard Cheshire Disability offer accessible breaks, with some giving discounts.
Check to see if you are eligible for grants such as: Carer's Wellbeing Grant, Carer's Holiday Fund, and the Carer's one-off grants scheme. They offer small grants that may help you fund your next holiday or hobby.
Taking a break to exercise can also boost your health, whatever that may look like for you. The Carers UK Active Hub offers free resources to help carers stay active.
Ever considered getting a pet? 40 per cent of carers believe a pet would enhance their wellbeing, though the responsibility can be overwhelming. Pet cafes could be the solution and they offer discounts or free entry for carers, allowing you to relax with animals without the commitment.
Finally, 16 per cent of carers say education or training opportunities would improve their wellbeing. You may be eligible to get funding to learn new skills or access free education. The Workers' Educational Association offers an array of free courses such as: cookery and baking, parenting, budgeting, and more.
Bethany’s story
Bethany Steventon-Crinks, who has autism and experiences seizures, suddenly became a carer for her mum last year. She shares her struggles and all things that helped her cope before her mum passed.
“I always received care from my mum, but noticed things were starting to change. When we went to events, we often had to leave halfway through for my mum, not for me anymore. Having to switch into carer mode was challenging.
“Mum had always been my advocate, handling all my calls to the council and providing the support I needed. But as her health declined, she was no longer able to do those things, and the roles reversed.
“My own physical and mental wellbeing took a hit. I once tried to lift my mum up and dislocated my shoulder, then ended up in A&E while she was in the hospital upstairs.
“Being autistic, I struggled with the language used by the medical body. My autism made navigating the medical system while caring for my mum much more difficult.
“During this time, I did not have a carer as the carers assessment process was taking a long time and my mum's health was rapidly declining. Turning to charities proved invaluable. In the final weeks before my mum passed, we spent time at Saint Rocco's hospice in Warrington, which offers free palliative care to people with life-limiting illnesses. They were phenomenal. I had a bed to stay there because I found the travel back and forth too much. The hospice was also very accessible, and I could go everywhere I needed to.
“I also found comfort in certain hobbies during the difficult times. We aren't allowed to bring fresh flowers into hospital, but dried flowers were permitted. So, I started pressing all her flowers and made a dried bouquet. It was something we did together; we would just sit in silence and layer the flowers in a book.
“We also used to sing. Mum had quite a few painful procedures, so she would ask me to sing as a distraction. I remember singing a bit of Wicked and Florence and the Machine.
“One of my favourite memories is sitting outside in the sun together. At the hospice, we were allowed to wheel the beds into the garden. Those few hours of sunshine were really helpful.”
THERE ARE ONLINE RESOURCES THAT CAN HELP:
- Find support via Care for a Cuppa on Zoom, Share and Learn online sessions and the contacts directory at Carers UK
- If you need employment advice, go to employers for carers
- Make sure you're getting the benefits you may be entitled to with turn2us
- For tips to take care of your mental health, visit: Carers UK or Mind
