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Being A Carer - The Invisible Challenge

Life Happens

The alarm is blaring but it’s Saturday morning, and I’m swiftly reminded that I forgot to reset it for weekend lie-ins. Deep sigh, turn it off. Quick ear to listen for the kids to determine if they’ve sorted out their breakfasts and it sounds like they have, so I roll over and snooze. Because it's Saturday. The sun’s streaming in, so I reach and grab for the eye mask and pull it on, anticipating at least another half hour of peaceful snooze. Then my husband walks in, sounding winded. Something in his breathing doesn’t sound right, so I sit up and pull the eye mask off; “Are you okay?”

He shakes his head and taps earnestly on his chest while panting.

I half expected that response, one that I didn’t want to have to deal with again, so I asked him, “Okay, are you going in now?”

He catches his breath and tells me, “Mum’s on her way to take me in.”

I nod because I already know the score. Don’t tell the kids yet, until we know more. More importantly, do not think about what’s to come, until we know more; it's no use getting over-worried and driving up anxiety. It’s Saturday and nothing at the hospital really gets done until Monday. But at least in the hospital, my husband will be safely looked after.

Make sure he has pocket change for hospital vending machines, because it's the weekend and both the adjoining café and restaurant are closed. We know only too well how that hospital and all of its services run, inside and out, because we’ve been there often enough.

We creep quietly out the front door, again not to alarm the kids. I stand outside bra-less and in pyjamas while holding my husband’s hand until my mother in law comes to collect him to take him to hospital again, leaving me to keep things calm and routine at home for the kids. It takes about five hours of waiting before learning that it was in fact, a heart attack; his second heart attack.

That was my morning before coming to work on 5th June 2021, roughly a month ago. It was a low-key affair within our household because any health crisis in our home is so well practiced. In our family, we’re all highly experienced Carers for one another, and we do health crises well since we have so much experience with them.

My Experience

It reminded me of the morning of 9th October 2015, when nursery phoned me for the fifth day in a row, asking me to once again collect my son because he had harmed another child. That child had moved some toys my son had painstakingly arranged in a pattern that only made sense to my son and was very important to him. My son’s response was to hit that kid, again. Six months later, my son was diagnosed with Autism and a load of other clinical definitions that I won’t go into here.

It reminded me of the morning of 18th April 2016 when I felt my veins run cold upon noticing that the whites of my three year old daughter’s eyes had gone yellow. At that moment, I had a vision that our lives would be irreversibly changed forever. Two months later, six weeks of which spent living on a hospital ward, my daughter was diagnosed with cancer.

It reminded me of the morning of 23rd Dec 2020 when Grandpa went to hospital and was diagnosed with having a stroke, two days before Christmas. And again one morning sometime in late March 2021, when Grandpa was having serious health issues which have yet to be diagnosed, but he was discharged from hospital having to manage his own catheter at home. Grandpa’s on a waiting list for more exploratory examinations and under the backdrop of COVID, both times our unspoken fears revolved around Grandpa going into hospital, never to come out.

Then the weekend before last (I should become a sitcom writer, because it's so ridiculous) both Grandparents ended up in hospital. Grandma, who was already disabled, broke her ‘good’ leg and dislocated her shoulder while trying to get Grandpa into the car to get to hospital to address a sudden spike in his temperature, in a space where they weren’t totally sure they were handling his catheter management well at home.

Life happens. Suddenly, circumstances change and anyone at any time has to become a Carer for someone else. It might have built up over time in anticipation and expectation, like it did for my Autistic son. Or some Carers may observe a slow decline in a loved one’s safe autonomy, as is often the case for the adult children of parents who are developing dementia or are otherwise just slowly declining in health. Other times Caring comes on suddenly, and comes on scary fast for things like cancer, strokes, or heart attacks. And then for many Carers, we often get ‘sandwiched in’ between generations; caring for children with health needs or special needs while also caring for ageing parents.

Increasingly, the odds suggest that either you, or someone you know, will suddenly find themselves called to a Caring role. According to Carer’s UK in 2019, it's 1 in 7 of the UK workforce*. In some cases, the call to Care will happen immediately, like when a loved one has a heart attack, a stroke, or is diagnosed with cancer. In other cases, it builds up over time from weeks into months or even into years, as often is the case with Alzheimer's, Dementia, or developmental differences in our children. Many times, the longer build up cases come with baggage of deep frustration such as, “We’ve been going to the GP for weeks and got fobbed off!”

What is a Carer?

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.

NHS Commissioning for Carers https://www.england.nhs.uk/commissioning/comm-carers/carers/

The definition above only covers the NHS’s legal remit for supporting Carers in their unpaid role. However, Carers end up being so much more than what that simple definition implies. Carers may make sure that the person cared for is taking the right dose of medication at the right time; might be visiting to help with house chores or with shopping; might be taking the cared for person to appointments or to witness appointments and meetings regarding their care; or may feel compelled to stay on hospital wards to look after their poorly loved one.

Beyond that, the Carer often becomes the first port of call and the sounding board for the person being cared for. Sometimes a person who needs care and is in a crisis state strikes out at their Carer, because their Carer is their ‘safe person’ who won’t abandon them when their need feels most acute. In spaces where a Carer is suddenly having to look after a parent, there is often a very complex shift in roles and relationships. Who looks after who? If that parent is losing their autonomy, these are hard spaces for a child (adult) Carer to navigate. Further, what does a Carer do when the person they look after refuses care?

Carers might be consulted or might be placed as responsible for some very important decision making for the person being looked after. At the same time, Carers get ignored often by the same agencies who depend on the Carer’s unpaid work and prior decision making, even though the Carer is the subject matter expert for the care of the person who they all look after.

Carers are often also tasked with coordinating health care directly, or to make the situation even more complicated, coordinating in between health care, social services and any number of other agencies who are brought in, as a result of multi-agency approaches to care. It is often the case that these agencies do really well within their own silo, but then do a very poor job on coming up with solutions as a multi-agency, rarely resulting in any worthwhile outcomes for the person who is being looked after. Good outcomes usually depend on the knowledge and acuity of the primary Carer who ends up being that sharp heeled or elbowed person to make that multi-agency coordination happen. That takes some energy and fight, and can be overwhelming when it's happening on top of work.

I might add, these agencies typically only work Monday to Friday from 9am to 5pm, but it's not like health or care needs suddenly stop after hours, over the weekends or on bank holidays. These multi-agency approaches are well conceived ideas but have performed poorly in practice because there is lack of accountability between each, and the buck usually ends up stopping at the Carer to sort everything out.

Meanwhile, Carers, in looking after their loved ones, often have very little energy left for advocating for systemic change once they've spent their time actually doing the Care on top of life’s other obligations such as family, and work, and almost always lastly - care for oneself.

It is so important for companies, employers, workplaces and colleagues to know… there are Carers all around us. As I said above, at least 1 in 7 of us are balancing work while also being Carers. And that doesn’t even account for the large number of people who have had to give up their jobs, careers and aspirations for themselves, in order to look after a loved one who needed care.

The Cost of Care

That stiff upper lip. That call to contribute to the community. That obligation to look after your family. In 2019, Carers saved UK tax-payers some £132 Billion in services, amounting to almost £20k per Carer. But then we’re also meant to be living in a society where we all look after one another; where health and social services are up to the task of caring for people, so that the people cared for can continue to live fulfilling lives and their family members can continue on in life with little disruption. That’s the aspiration, but the lived truth is far from it.

Every day in the UK, around 600 people are giving up work and their careers to provide full time care for a family member or loved one because of under-funded multi-agency approaches. At present, these multi-agency approaches have nebulous, if any, accountability. People working in those spaces like to blame “systems”, but at the end of the day, it's still the same people who run those same systems.

It is very important to remember that Carers usually put themselves last while looking after loved ones as well as work commitments. The right workplace can make all the difference for the health, well-being and mental health of Carers who feel buried beneath this mountain dropped upon their shoulders.

Among Carers who have either retained work, returned to work, or who have had to launch their own businesses in order to earn money more flexibly, they look at work as a welcome diversion from Care, because work is so much easier than Care. It's a long running joke among Working Carers that work is a holiday, by comparison. There have been no studies around the amount of holiday time Working Carers actually take to travel abroad or take time for themselves, but I suspect that number is low. Meanwhile, many Working Carers I know look at work as respite, because Carers get such little respite. Work ends up being where Carers get to be themselves, and not a Carer, since Care is so all-consuming.

For myself, I can speak to many things there. Any time any of my family members have yet another health episode, I find myself feeling the pull to get sucked back into full time Care, feeling like I have to quit my job, quit my aspirations, and quit being me, to go address that… again.

I’m a good Carer and I know a thing or two about how to navigate health and social services because I have extensive experience there (is there a Google Certification for that?) since it sucked some 7 years of life out of me. But also, I work very hard to counter that while at work. I deserve to be me too. Many Carers are so drawn into Care, and Carers seem to often forget how to be themselves because their Caring role creeps and grows into everything, in order to achieve the best outcomes for the loved ones that they look after.

However, for my own health, well-being and sanity… and am 100% certain, Working Carers will say the same… I need work for respite and I need a supportive work environment for that. Carers don’t get a break otherwise, and typically work issues don’t feel as ‘big’ as Care issues. In some weird way, Carers are workplace assets because of that experience. Carers not only perform, but often over-perform. Ask any colleague you know who is already a Carer. Or ask any of my current line managers, past line managers or work colleagues; what have I done for the business recently. I often feel like I have to over-perform at work to counter balance whatever the next health crisis for our family might be. Stock up on that performance and social capital, right?

We all know, especially in the blur of pandemic-work-from-home, how easy it is to put work before ourselves. So then what happens when a current colleague has Care thrust upon them? What happens when a Carer applies to CTS Group? Or if a Carer comes and joins the company? How tolerant are we of each other's limitations that are far beyond our control? What would you do in my shoes, where I have great talent, loads of experience and clearly visible potential and need work as respite, because I don’t get relief anywhere else?

What Can Work Do?

To me, when it comes to work looking after Carers, there are a few tiers where the right workplace can make all the difference.

What Colleagues Can Do To Help

When a work colleague discloses to you that they’re a Carer, whether or not that colleague recognises themselves as a Carer, here are some top tips for supporting your colleague… or perhaps things you could and should ask from others if you find yourself in the Caring space:

1. Consider what you know about that colleague’s family life. You don’t have to say anything. In fact, I advise saying very little and listening a whole lot. If there’s children in the household, recognise that in some form, those children will be doing some care and becoming Young Carers too, having to take on responsibilities beyond their ages. Consider how that might affect that colleague’s mood and energy.

2. Offer to be that sounding board. Even at risk of being ‘turned down’, go and offer anyway… the worst thing a Carer will say is, “Okay!” and then you’re really in for it! Joking aside, a Carer needs their community more than anything else. On most days, just knowing that their community is there is just enough for that Carer to stride forth to conquer that day; care, work and all!

3. Consider what flexibility in working you have and what you can do to offer cover to your colleague. Most times in the Care world, it’s a lot of ‘Hurry Up to Wait’ with flurries of activity where that colleague might have to attend and support during loads of appointments scheduled back to back - and then things drop off rather suddenly for a very long time until there’s another flurry of activity. Any flexibility you demonstrate that contributes to team efforts can also be recognised and benefit you too. Where industries are hard on Carers due to ‘one size fits all’ practices, great flexible teams make all the difference for including Carers. Finally, that Carer will see your contribution and will likely always have your back, especially during those flurry phases.

4. Next time the Charity Team offers a chance to nominate charities to contribute to, go suggest a charity that you think will be close to your colleague’s heart, so that your colleague feels acknowledged, included, and simply thought of.

5. Always remember that Carers do things very deliberately after great consideration and Carers don’t typically ask for things lightly.

What Management & Recruiters Can Do To Help

1. As above, Carers do things very deliberately, after great consideration, and don’t typically ask for things lightly. Carers already have enough ‘weight’ on them and they’re not looking for more, but then they may also want to strive and achieve, since work might be their respite. Therefore, consider alternative working arrangements for not only trusted and proven employees, but also for new starters, such as working part time and/or job sharing, when that Carer asks for that accommodation. Job sharing in particular seems to be an interesting, yet very under-utilised resource in all industries that otherwise has great potential for attracting great talent from the Carer community which can meet business needs and the bottom line… but largely remains untested.

2. In almost all of the examples I've given, there is involvement from many agencies for Caring... NHS and Social Services are chief among those. All of these agencies run Monday to Friday 9am to 5pm, which obviously collides with traditional work time, and those agencies issue their appointments independently of one another. Flexible working options are paramount to the success of a working Carer.

Also, as responsibilities often comes in ‘flurries’, there might be a period of 3 months where it seems like a working Carer is always off attending appointments and doing things to support their loved one. And then, it’ll be a full year or more before the next ‘flurry’ comes. Recognise that and try managing it. Remember, working Carers are 1 in 7 of your employees now. I don’t like having to ask for leniency on sick time off, maybe there needs to be better communication around insurance, and ultimately it's not clear where time can be flexed, and how it can be flexed in those circumstances. Clarity there, so that working Carers can feel secure in their role is very helpful.

3. Health and Social services continue to invite Carers to take part in their next “Have Your Say!” meeting or workshop to improve their services. For Carers, there’s a strong desire to attend these, if for no other reason than FOMO. Opportunities for Carers to ‘have their say’ in any official capacity are rare. However, these meetings and workshops are often announced last minute by local councils and tend to overlap with typical working hours, running for 4-6 hours. This is terrible for working Carers and it clearly demonstrates how little Carer needs are being considered by these agencies, despite there being a statutory obligation for local authorities to meet them. That is because there is very little accountability. These time conflicts mean that working Carers don’t get their needs heard when they can’t participate. There is such a strong assumption that Carers who engage in advocacy have loads of time on their hands because, in general Carers can’t work and have jobs... like we’re sitting back, twiddling our thumbs with nothing else to do. So perhaps to overlap with any work-related volunteering, community, or charity type service that a company has committed to as a part of their ethos, include that employee who is a Carer and enable them to spend that time ‘volunteering’ to advocate for Carers or for the people that they care for and give them the option to go and get heard. And then recognise those working Carers for their achievements in that space.

At the End of the Day

No one should have to choose between work and Care. We’re meant to be living in one of the wealthiest nations on the globe with a very thoughtful and caring attitude towards looking after our own.

I deserve to both work and be a Carer where those roles do not collide with my individual needs, caring roles and my right to work. It's been enshrined in law, but with little accountability.

Employers need to take a hard look at that and lean in; both to support their employees and also to lobby the government, as there are so many challenges for talented workers who are also Carers, who feel alone in engaging with that advocacy. Working Carers feel so grateful to even have a job that it is far too easy to overlook that “1 in 7”... most of us working Carers keep quiet on that because under current circumstances, work is actually a privilege to have a space to achieve something that’s not Care related. I think this notion is only going to grow as our parents age and if the government keeps on its track of under-funding local efforts to support families with real need.

There is some legislation already enshrined in law, such as the SENDReforms 2014, but these have also come into force without accountability or funding to local health and social service providers. Then the buck stops at Carers who look after their loved ones. Employers have their statutory obligations towards sick leave, parental leave, etc., but very little for Carers, where Carers are going to continue to be a larger part of the workforce. I personally would never wish this on anyone - having to juggle work and Care all of the time, like I have to do. But under current circumstances, the number of employees finding themselves in Caring roles is on the rise. And please don’t forget about, nor underestimate potential recruits too, who because of the weight already on them, typically wouldn’t bother anyone else with their problems, nor entertain any risk, unless they felt very sure that they had something great to contribute to our organisation.

If none of this ‘Carer stuff’ has made much sense, check these out:

What do you think you’d need from work after returning from any of this?

● Step into being a working adult, suddenly having to care for your parent: Care , BBC https://www.bbc.co.uk/programmes/p06tz0d9

● Step into being a working adult, who has a child with additional needs: There She Goes, BBC https://www.bbc.co.uk/programmes/p08lqk1m

New to Care While Working?

● Carer’s UK https://www.carersuk.org/

● AgeUK https://www.ageuk.org.uk/

● Carer Services near you (post code search, because it is a postcode lottery) https://carers.org/help-and-info/carer-services-near-you

● Contact: Find Your Local Parent Carer Forum https://contact.org.uk/help-for-families/parent-carer-participation/find-your-local-parent-carer-forum/

Written by Jen Calland

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