Carers' week - becoming a carer; balancing working and caring

It's Carers' WeekCarer's Week - an annual campaign to raise awareness for caring & to support carers. I don't post often, but I thought I’d share my experience of becoming a carer in case it helps anyone.

Caring can arise in many situations (including supporting elderly, ill or injured family), take many forms, and is something most people do at some point - whether briefly or long term.?It can take years for someone to identify as a carer. In my case, however, the realisation was abrupt and immediate, though the responsibilities themselves continue to evolve.

The Friday night before my daughter’s third birthday party, I found myself with her, my wife and son in A&E. We’d rushed our youngest, then three months, there because he appeared to be having seizures.

Theo was soon diagnosed with Tuberous Sclerosis Complex (TSC). It’s a rare genetic condition which causes (typically benign) tumours to develop in the brain, skin, kidneys, heart, eyes and/or lungs. It can be inherited or, more commonly, caused by a spontaneous mutation.

Part of the challenge of digesting the diagnosis – aside from the shock – was the huge uncertainty. As with many conditions, the range of outcomes is bewilderingly wide: some are unaffected and may not know they have it (my wife and I had to get tested); others can be profoundly disabled.

Now, three and a half years later, there’s more clarity, and we have settled into our (to use that now ubiquitous phrase) “new normal”. Jo and I have been spared a TSC diagnosis ourselves. But Theo’s case of TSC is severe: he’ll need life-long care, and potentially faces life-threatening complications. He has drug-resistant epilepsy (between a few, and a few dozen, seizures a day), profound and multiple learning difficulties, and global developmental delay (now nearly four, he's has the abilities of a three month old).?His medication suppresses his immune system, increasing his vulnerability and meaning there’s a low threshold for A&E visits. Theo is non-verbal (though certainly vocal!), wheelchair-bound, and unable to sit or do much with his hands. There has been some – much celebrated, albeit slow - progress: he can now hold his head unsupported, roll over on the floor, and is beginning to reach for things with his right arm.

My wife and I both work full time, but even with the kids at school and a nanny for after school, we are certainly kept busy. To external observers, perhaps most evident on the caring front is that we have to attend to Theo’s physical needs - feeding, changing nappies, administering medication, entertaining and moving him around, etc.?

Other impacts are perhaps less immediately apparent. There's the constant stream of appointments (with the Council, physiotherapy, occupational therapy, the wheelchair service, the home adaptations team, speech & language therapy, pathology, neurology, cardiology, ophthalmology, dermatology, nephrology, etc) - perhaps averaging one or two a week. (Thankfully one of the positive impacts of the pandemic is that at least some of this is now delivered remotely, which is vastly more convenient and efficient.)?There’s also the costs (e.g. money, time, relationship and emotional) of support - most recently needing to move - and then adapt - our home (and soon, vehicle) to suit. And there’s endless admin and dubious delights of navigating labyrinthine systems (applying for Blue Badges, ULEZ waivers, Disability Living Allowance and an EHCP; coordinating carers and their employment; arranging prescriptions and appointments; etc) - with appealing decisions and having to write a letter of claim to the Council proving to be a busman's holiday for me, as a former litigator! Some impacts are yet to fully manifest. Theo is likely to have major surgery. We’ll probably ultimately have live-in support. As Theo gets larger, accessibility will become an increasing challenge: wheelchair access (transport, public places, friends' and family's homes, holidays, etc) is still far from universal; staying away in unadapted accommodation may become unviable. Eventually, he may need to move into specialist residential care.

Despite – and sometimes because of – these unexpected challenges, Theo brings his those around him much joy, laughter, and - occasionally - temporary deafness! He is loved and treasured. He’s reinforced the lesson that people are not your expectations of them; rather, we’re there to support others on whatever journey they may be on. And our destinations may be different to what you might have envisaged, as this simile of being a parent of a child with special needs explains.

It can be challenging to keep the plates spinning. Like becoming a parent, it’s been an(other!) education in efficiency, effectiveness, and essentialism.

I expect I’d have found balancing caring responsibilities with working in some of the environments I have previously incredibly challenging, perhaps impossible. In stark contrast, I’m hugely grateful that my employer, the Bank of England, has been so understanding and supportive through management, colleagues, and its specific offerings for carers (including Carers’ Leave, Carers' Passports, and a Carers' Network). It’s also comforting too that Carers UK is one of the Bank’s charities of the year.

Perhaps less obviously, there are other offerings which help. I’m taking some unpaid statutory parental leave later this year (available to any employed parents of under 18s – not just at the Bank). There are various groups, networks and charities (e.g. the Tuberous Sclerosis Association). Yoga classes provide the opportunity for some most welcome calm, relaxation and exercise. Self-care is something carers often struggle to make time for - I certainly do! But it's often crucial to ensure you've put on your own oxygen mask first before helping others with theirs.

I probably shouldn't end without confirming that, despite having to shuttle back and forth from hospital to pull it off, Sophie’s “soft play third birthday” party did go ahead. A surreal event for me, and probably not the sort of juggling expected, but a success for her – so much so that she wants to do the same again for her forthcoming seventh! Perhaps if we’d achieved less, we’d have to less to do …

Sometimes busy people are good at getting things done (even if that can be a rod for their own backs); at other times, they really do need support or a break. Knowing which can be hard to tell from the inside, and this is where good habits, management and networks come into play.?