Commentary: 'Burning'
There was no holiday for many Unpaid Carers.
Whilst many of us are excited about this New Year, setting new goals and making plans for ourselves, spare a thought for Unpaid Carers (UK), and caregivers everywhere.
In the UK the NHS defines an Unpaid Carer as
A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.
So, unpaid health workers?
Over the last week, in reconnecting with friends and other Carers, I've been struck by the repeating theme amongst Caregivers - ‘Phew, it’s over’, ‘We’re back to our usual routine now’ and ‘I’m so overwhelmed’. Physically and mentally depleted, their first question is still to ask for advice and tips, to improve the care that they're giving to their loved one. Seemingly, oblivious or ignoring the fact that they are burning or burnt out themselves because their loved one needs them.
Today, these thoughts pulled me away from the inspired creative path I was on, ready to kickstart my discussions with mentoring clients, and drew me back to the fire that brought me here in the first place: to share empathetic resonance with other Carers and prime any reader to the challenging realities of being an Unpaid Carer, in the hope that these insights can ease someone else's struggle.
You see Christmas and New Year for many Unpaid Carers are like any other day of caring, except for the fact, that there's more pressure to try to make it special or sustain familial traditions. Many of us, have been hunkering down and away from the myriad of coughs, Covid-cases and sneezes which were on the rise after schools and offices closed. Isolating is nothing new for Carers, but storms, flooding and the cold dark days didn't make this season very festive! If you saw people removing tree litter from drains near you that may have been a few Carer friends, of mine pre-empting a house-flood.
Whilst many people may have re-energised, are setting new ambitions, or are planning that next 'fabulous holiday at Easter' (yes I admit I’m a tad envious!), Unpaid Carers are wondering if tonight they can get a couple of extra hours of sleep for a change now that the mayhem is over and 'normal' caring routines can resume (plus or minus any care support they have in place). Don't forget Paid Carers have their holiday season days off, Unpaid Carers don't! You may not realise that there are some Unpaid Carers around you, exhausted, trying to keep up with everyone when they’re struggling. Please be the empathetic one.
I know these kinds of Christmases very well having cared for my Dad until he passed away in January 2020. Thankfully, my Mother's cancer is under control. So today, this isn't about sharing my journey or current situation, this is about raising awareness to you and anyone that you can share this with, about starting to scenario plan and strategise, managing through long-term chronic illness, eldercare or long-term disabilities. What are your wishes and those of your loved ones? How will your/their wishes be carried out?
Each person has a unique journey and situation when it comes to caring for a loved one. However, until the time I was able to connect with other Unpaid Carers in the UK, via Carers UK, I was ignorant of the crisis that is here now and getting worse. [Please note I don’t represent Carers UK, I am not a trained expert, so please consult Carers UK, the experts - details below]
If this post calls just one person to act, to start having the uncomfortable, difficult discussion with their parents or a loved one in advance of a crisis happening, then it's served its purpose. Forgive me for relaying these brutal facts.
Don't wait for a crisis to happen.
7 Fires burning
The question of 'ability to fund in-home care support' is second to day-care support being available in your geographical area in the UK. It's a postcode lottery. Even in London, hospice-at-home care can be very different from one area to another. I experienced this trying to support relatives where the husband rapidly declined over 1.5 months, suffering cancer. They were extremely fortunate. The care in their borough was exceptional. They were postcode lucky because it wasn't available in the neighbouring postcode! Consider what this means for rural areas across the UK! Are there community support groups? Transport support to hospitals? Research what’s available now.
Night-time care support is worse and seems to be supported more by charities. They have finite resources and have to prioritise the most dire needs. How do disabled or infirm people get to the bathroom at night? What happens when they become incontinent?
The question of quality, i.e. 'Good paid carers', is secondary to ANY support being available and to the individual being able to pay for it. Good-paid carers are the 'gems' people who take the time to empathetically care and try to form a relationship with you. As opposed to the majority, trying hard but only able to be transactional in their actions e.g. make a sandwich and dash out, because they have huge workloads. Thinking about what the 'bad' carers do takes very little imagination.
An unpaid Carer may not have a choice in terms of these questions, or be in a position to question the quality of care if they have to work. It's a moot point when you have to earn more than the allowance of £220.90** to pay bills and eat. Receiving the State Pension disqualifies Carers from Carers Allowance. (see notes below). The cost of living crisis has pushed many people beyond their physical, mental and financial capacity.
Every Unpaid Carer struggles, regardless of money. I realise that may not ‘play well’ to some. There is no choice when it comes to burning the candle at both ends and in the middle because with or without day or night time care support the unpaid Carer is the loved one's champion, advocate and the only glue between everything; hospital and community care is disjointed, communication is unreliable, actions between health and social carers are fragmented, siloed, single-transactions. NHS and social care are NOT the same thing, in terms of operations and funding. So, Unpaid Carers are the single point of contact for everything 24/7, 365 days, every year.
Any Unpaid Carer struggles because in the 25th to 48th hours of the carer day, we chase appointments, check medications, follow-up on discharge letters, and ensure the next appointments are done, not to mention making sure our loved one's health and welfare are sustained (shopping, cleaning, house admin., house repairs, finances). All this whilst curating moments of connection with friends and family, or not, and you're isolated. The burden on Carers is heavy. Husbands or wives find themselves deciphering the tasks their partner used to do. Imagine what that means in terms of passwords, finances and tax returns. Have they prepared or organised Lasting Powers of Attorney? Written Wills?
Whilst the situation is a burning platform about one person’s health the Unpaid Carer's health deteriorates too. Everyone in the family is burnt in some way, at some point.
Notes**
IF Carers choose to seek employment on top of carrying the burden of caring, and they are employed, they can only earn a maximum of only £139 per week. If we add this to the Carer’s Allowance £76.75 for caring minimum 35 hours. This means Carers receive £215.75 per week, dismally below the national living wage (£6.16/hour versus £10.42/hour). See my other article ‘10 facts that shock .
When you hear politicians referring to UK Carers Allowance, I hope now you understand why Unpaid Carers struggle. Carers who are retired and receive a state pension are Unpaid Carers but are ineligible for Carers Allowance. These Carers are not only husbands or wives but can also be parents looking after adult children with disabilities, or chronic illnesses. Retirement is not what it used to be.
This is only a small glimpse into what Unpaid Carers are experiencing.
Whilst living longer seems great, chronic illnesses and overburdened healthcare systems mean longer periods of caring at home
My parents and I were very lucky in many ways but from the major hospitalisation to Dad's passing was 5 years. 2 weeks after his funeral, we stepped into another rollercoaster with Mum’s Cancer treatment. Mum and I were 100% aligned, and clear on how we would navigate through, and that has served us well and made all the difference, these last 3 years. So that’s 8 years so far.
I never advocate or push views of ‘the right way’ to care, each person and situation is different. I strongly advocate taking the time to make informed choices in concert with family before a crisis happens. Special note: Hospital discharge is particularly fraught. Please read this
Click over to the December 3rd, article ‘Spinning plates..’ to start priming yourself with some tips.
Big Empathy. I hope you can take away some actionable recommendations, from this or previous articles. Alternatively, reach out to Carers UK.
The experts at Carers UK.
Carers UK Helpline service is available Monday to Friday, 9am-6pm on 0808 808 7777 (including bank holidays, with the exception of Easter Monday). Alternatively, you can contact our Helpline service by emailing advice@carersuk.orgat any time.
They offer advice on:
benefits and financial support
your rights as a carer in the workplace
carers' assessments and how to get support in your caring role
services available to carers and the people you care for
how to complain effectively and challenge decisions.
Thank you for this. In the US it’s also Thanksgiving so it’s a 4 week rollercoaster of care with an added layer of nostalgic cultural expectation.
I really empathize with your situation and you opened my eyes to the hardship facing caregivers in the UK. Actually, in the US, although some caregivers get paid by the government to care for their family members, the requirements are stringent and this isn't available in all states. Here in New York this program is available, but then it wouldn't make sense for a lot of people to take advantage of it because the payment is very low and living expenses are exorbitant in New York.
Last year at Christmas I had to give up my entire winter break to care for my mom after she broke her knee and had a surgery. I continued to care for her for about half a year and I definitely felt burnt out. The aftercare services are extremely poor, and the insurance coverage extremely limited and frustrating to navigate. I cannot imagine doing this full-time. What you wrote about people living longer and needing more care is so true, and our governments are not at all prepared for this.