Author: Alex Prestage

This week marks Carers Week 2020, a week where we as a community can make visible, and celebrate, the often unrecognised labour and experiences of those in our community who care for others. In collaboration with NEST (the network for parents and carers at King’s), the EDI Function presents several blogs written by carers. You can find out more about NEST here. The fourth and final contributor is Hemali Patel:

Hi, I am Hemali and I am an unpaid carer.

It still feels weird saying that. I often need to remind myself that is part of who I am now.
Why is that important? Because it gives me permission to:

• accept help,
• seek out support,
• cut myself some slack,
• be kinder to myself.

I only allowed myself to do the above when I let myself self-identify as an unpaid carer. Before then I never realised how much pressure I put on myself. That hasn’t stopped completely, but I am more self-aware and working towards “letting myself win”.

I secretly started thinking I could be an unpaid carer in Spring 2019.

My mum became bed and homebound in February 2019 – my life changed.
I no longer slept more than 3 hours (on average) a night – often broken sleep due to helping her move or to change dressings. Naturally, I was tired all the time, unable to focus, having trouble with memory and information recall (I’m still working on improving that one!).

My social life was slashed by 90% (minimum!) overnight (I was a self-proclaimed social butterfly, this was tough!). I became unreliable, regularly cancelling pre-arranged catchups, dinners, and birthday parties, often at the last minute because my mum needed me. It became difficult to maintain relationships, friendships, and connections with people from both my personal and professional life. My career was my purpose in life, my network and connections were working for me.

My career was counting down to lift-off…

3, 2, … STOP!

None of that mattered anymore, from 2019 onwards I had one priority and that was my mum. The management of her health, physical and mental, chasing for appointments, researching diagnoses, monitoring treatment, meticulously taking minutes of every conversation with every healthcare professional, challenging inconsistences and contradictions between consultants, chasing paid care givers and district nurses who might not show up, getting the nurses to teach us how to administer medication and dressings (funding cuts to the NHS meant a choice between missing treatments and mum becoming worse or DIY!). The list goes on… contact me if you want the extended monologue.

The real revelation happened when amongst all the mayhem we received a letter from the Department of Work and Pensions (DWP), stating that their assessor deemed that my mum was fully mobile, capable of taking care of herself and that they would be ceasing her disability allowance.

I cried that day, out of frustration. I have been strong for my family, for my mum, for my friends – my shoulders are there for you all. But I was exhausted. The energy I knew I needed to fight this battle was spent on ensuring my mum got access to medical professionals, diagnosis, and treatment; spent on keeping up with my workload, plate spinning, trying not to let my team down or let our community down, meeting deadlines, and not be the one who always says no to catching up.

I stumbled across the Carers UK website when searching for tips on filing for appeal against DWP (oh yeah, I am a nurse, GP assistant and legal clerk now – check me out!). That was the beginning of a life with a little less stress. They had clear information on all the steps in the process: applying for funding, the different types of appeals, links to all the relevant forms, when it would result in a court appearance etc. In short, I followed it step by step, saved time wasted on google, ended up in court – and won. Boom.

The strange thing is that now when I look back (pre-2019) I realise that my sister and I have been unpaid carers for most of our lives. From high school to university I lived with my grandma who was also bed and house bound. At the time we saw ourselves as doting granddaughters!

In 2009 my mum had a brain haemorrhage and the risks of paralysis increased every year, with every operation she had. In 2013 I decided it was time to move back to London and in with my parents so I could spend more time with her and be there if she needed me. Until last year, everything I had done just felt like my duty as a daughter and nothing more. I never felt I needed recognition, support, or a break – we didn’t think of ourselves as carers: “this is life, just get on with it”.

Self-identifying (even if it’s just to yourself) as an unpaid carer is not something to feel ashamed of or guilty about. You can be “doing your duty” as a family member or taking care of someone you love at the same time. I am not one for titles and labels, but opening yourself up to the prospect of being an unpaid carer you open yourself up to a helping hand, an ear that understands your struggles, opportunities for respite, people who understand that you might not reply for 2 weeks but will still send you weekly texts/emails just to check in on you (with no judgements! Thank you Megan from Carers UK 🙌⭐).

I have struggled with not living up to the high standards I have always set myself, especially professionally. Dealing with that has been difficult but knowing there is support amongst the King’s community has helped. Especially reading about the support, stance and action King’s, as an employer, takes for its workforce; it has helped deal with my carer guilt and alleviates some concerns around my capacity to commit to work during the lock-down and subsequently my job security. Most employers don’t recognise carers as much as parents.

My hope is that if you take anything away from this piece it is:

1. almost everyone will be an unpaid carer in their lifetime (or be supported by one).
2. you are doing the best you can (do not be so hard on yourself), and the care community is here for you!
3. it is ok call yourself an unpaid carer (it doesn’t mean you are being forced to look after a loved one) – owning it opens a world of support, opportunities.

Hemali Patel

Head of Entrepreneurial Engagement, Entrepreneurship Institute

www.kcl.ac.uk/entrpereneurship

This week marks Carers Week 2020, a week where we as a community can make visible, and celebrate, the often unrecognised labour and experiences of those in our community who care for others. In collaboration with NEST (the network for parents and carers at King’s), the EDI Function presents several blogs written by carers. You can find out more about NEST here. The third of our contributors has chosen to remain anonymous:

Caring responsibilities tend to appear unplanned, without any of the supporting infrastructure of childcare. As we know, they hit the middle-aged (often already juggling childcare responsibilities with work) and they disproportionately hit women. All this has become brutally apparent as I’ve assumed partial responsibility for the care of my elderly parent, who lives alone, with dementia, supported by visiting carers. While King’s offers us unpaid leave to deal with caring emergencies, this kind of caring support is a permanent semi-emergency. So many of the elderly parents I know refuse to consider residential care or moving into supported housing, insisting instead on independence, which is scaffolded by a massive and invisible amount of support from, generally, their children.

Academic life makes some of this easier: out of term time, work is often flexible enough to visit at short notice or manage sudden hospital discharges. Term-time is much harder, and the social care system and the NHS both operate on the assumption that a family member will be always available to pop in, accompany to appointments, pick up medication, etc. With dementia sufferers, remote management is multiply challenging as they lose paperwork and forget visits. So caring for me is often simply administration: persuading authorities to send paperwork to me; organising money and shopping; finding a chemist that will deliver medication, and a carer that will keep it hidden; and assessing medical problems remotely. It also, of course, involves lots of repetitive phone conversations, visits, house-clearing, and trips to specialists and dentists. I’ve never taken advantage of the carer’s leave we have, because missing teaching or even meetings is a huge step, and because needs are so unpredictable. I’m resolved to do so if necessary in the future! Lockdown has made all of this much harder, because the daily routine, outings, social contact, and physical intimacy that are critical to dementia sufferers have all been swept away. Isolation has been disastrous for my parent’s mental and physical health, but it is also not possible to get assessments or more carers due to the crisis. The future of social care looks alarming. That said, the patchwork of care we’ve put together is just about holding. I can only imagine how hard this is for colleagues whose relatives live on the other side of the country or across the world.

Anon.

This week marks Carers Week 2020, a week where we as a community can make visible, and celebrate, the often unrecognised labour and experiences of those in our community who care for others. In collaboration with NEST (the network for parents and carers at King’s), the EDI Function presents several blogs written by carers. You can find out more about NEST here. The second of our contributors is Pam Mellen:

I am a mother to two daughters, Gwen (aged 3) and Rosie (8 months). My husband and I became carers to Gwen almost overnight, suddenly facing the inevitable struggles of new parents alongside managing her health needs.

When Gwen was born, we thought everything was fine. Less than 24 hours later she was diagnosed with a congenital defect, requiring urgent life-saving surgery. Her conditions (tracheoesophageal fistula and oesophageal atresia, aka TOF/OA) left her unable to swallow and with air slowly filling her stomach. Those first few weeks were a blur, with surgery and a slow transition from IV to an NG tube to oral feeding. We spent at least two hours in the car each day, driving to and from the NICU to visit her.

In many ways we were lucky. She only required one surgery and minimal additional interventions – some children with TOF/OA require months of hospitalisation and multiple procedures. She had no additional defects – about half of children with this condition have one or more. However, that didn’t mean that she was a typical child. The repaired section of her oesophagus is very narrow and lacks the ability to properly push food down. This means that food can become stuck – commonly called a “stickie”. Another side effect was severe reflux and problems with her repaired trachea, leading to a high risk of chest infections and a barking cough.

Feeding was incredibly stressful and continues to be our biggest challenge. As a baby, Gwen was combination fed due to low supply, which meant experimenting to find a safe bottle for her formula – ordinary bottles released milk too quickly, causing it to become stuck. Later, when weaning, we had to be extremely cautious about giving her only pureed and dissolvable food, all in small amounts. She still got routine stickies, and progress to thicker and lumpier textures was slow. Mealtimes were fraught – she could get stuck on foods she previously tolerated, and we spent a lot of time regulating her eating. Inevitably, stickies happened despite precautions, so we had to support her to cough food up, or down, always with the background fear that this time it wouldn’t come out, and we’d have to take her to A&E. Plus, Gwen increasingly wanted to self-feed and fought spoon feeding. However, she simply could not tolerate table food like other children her age – she primarily ate pureed food until she was well over a year old and continued to have purees routinely until she was over two. That meant well over a year of preparing and freezing purees, trying to get the right consistency, quantity, and nutritional balance, then fighting to get her to finally eat.

Another challenge was that with each medical appointment – and there were many – we had to weigh up whether both parents should attend. I was on maternity leave for 6 months, and my husband had shared leave for the following 3. There was not always a clear line around when an appointment was important enough to justify both parents attending. When we both returned to work, we had to work out who would be arranging time off for each appointment – if not both, then who? I felt the pressure to be present at all appointments – not from my husband, who is a fully involved dad – but, more nebulously from the sense that a caring mum would insist on being present at everything, regardless of whether it was strictly necessary. Combined with having a much more understanding workplace than my husband’s, it was a difficult balance to strike.

In her first year and a half of life, there were multiple A&E trips, one re-hospitalisation, one ambulance ride and uncounted stickies. The last were especially challenging when in public, trying to manage Gwen’s condition while attracting stares – feeling like I should reassure people that no, she wasn’t sick and vomiting and no, she didn’t have anything infectious.

External support was extremely limited. While we have wonderful families, distance meant they couldn’t offer day to day help. I’m an immigrant, so my family lives overseas, and my husband has no local family. His parents made regular trips up to visit – my mother-in-law in particular provided extensive emotional support – but practical assistance was by necessity only occasionally available.

The good news is that things have gotten better. As Gwen grew, her oesophagus grew. Combined with learning self-management, she expanded her ability to eat so that now, at 3 and a half, she can eat almost everything a typical child can. She still gets stickies several times a week, still doesn’t necessarily want to have a drink to clear them but now she can tell us what’s going on and is starting to understand how to help herself and to talk about her “tricky food pipe” to others.

Our next challenge will be the transition to a new nursery. Gwen was scheduled to begin the week that the lockdown came into effect. We have a written care plan, but we can’t be sure how well the staff will cope. We’re also worried about how other people will react to hearing her cough. The “TOF cough” has improved but hasn’t gone away and in the current climate any loud cough is likely to attract attention.

Each step has brought new stresses and worries. However, I feel grateful for my happy, independent little girl who takes everything in her stride, and fortunate at knowing that her complications should continue to decrease over time. Finding out that my child had a life-threatening medical problem was the most frightening and upsetting experiences of my life and caring for her has been undeniably stressful, but now it’s become so much our normal that it’s hard to imagine it being different.

Pam Mellen

Project Manager, King’s Digital Lab

This week marks Carers Week 2020, a week where we as a community can make visible, and celebrate, the often unrecognised labour and experiences of those in our community who care for others. In collaboration with NEST (the network for parents and carers at King’s), the EDI Function presents several blogs written by carers. You can find out more about NEST here. The first of our contributors is Isobel Ige:

I am an unpaid carer, one of an estimated 8.8 million adult carers in the UK. According to Carers UK, unpaid carers providing regular unpaid support for a friend or family member due to illness, disability, mental health problems or an addiction, save the economy £132 billion per year. There are approximately 5 million people in the UK who juggle a caring responsibility with work, which is a staggering 1 in 7 of the workforce. This means that many of your colleagues around you will have some form of caring responsibility, much of which will go unnoticed or unrecognised. Yesterday marked the start of Carers Week 2020. Carers Week is an annual campaign to raise awareness of caring. The theme for this year is ‘Making Caring Visible’ and to contribute to this, NEST (the network for parents and carers at King’s) is making visible some carers from our King’s community. To kick things off, here is my story.

I’ve worked at King’s for over 18 years, all of which have involved me being a carer in one aspect or another, firstly as a parent and latterly as a live-in carer for my mother, who has mobility issues and dementia.

I became a carer to my mother about 3 years ago, when dementia was confirmed after a couple of years trying to get a diagnosis. Dementia is a cruel disease and affects people differently. The stages of dementia are not defined – there’s no timeline, no cure, no ‘typical’ response.

To me the word ‘carer’ or ‘care-giver’ gives mixed messages. It implies devoted people, who’ve made selfless sacrifices to look after their loved ones. It also implies low pay, poorly valued work that is undertaken by those who don’t have many qualifications. I’ve become an unpaid carer to my mum by default, really. I have a sister, but as mum and I live together, the full caring responsibility has fallen to me and I just have to deal with it. I’ve got no say in the matter.

One thing I didn’t expect was the change to both of our personalities after the diagnosis. Mum was fiercely independent, a single parent, a teacher and very self-sufficient. However, she has now become clingy and doesn’t like being left (not just alone, but also by me). She can also be very stubborn and aggressive, which makes it hard to want to be with her.

However, it has also changed me as a person. I’ve become distant from my friends, I’ve stopped going out after work, I’ve become angrier. I shout more than ever (even more than when I had a teenager at home).  I cry.

I used to consider myself lucky that I got to go to work every day, to ‘escape’ the situation, rather than being an ‘at home’ carer, looking after mum all the time. Going to work kept me sane and able to deal with the change in my feelings towards my mum. However, in the situation we all find ourselves in now, where I’m at home 95% of the time, it’s been more challenging than ever.

I often feel ashamed of my feelings and how I’ve dealt with the situation I’ve found myself in. I love my mum and I’ll continue to look after her in our home for as long as I can, but I don’t like her anymore. I don’t like the person she’s become, and I don’t like the person her dementia has made me.

Isobel Ige

School Programmes Manager (UG), School of Global Affairs

NEST Committee Member