And Then, I Die…

Photograph by Angela Harper


Can we talk about it, please? I mean, really talk about it, candidly, honestly, respectfully. How possible is it to safeguard our adult/child with a learning disability when we (parent/carer/siblings/guardian) are no longer, given how tricky it already is while we are alive? This is my current journey, 24 years in with my daughter Kathleen. Surely, I can’t be the only parent having these thoughts:

And then, predictably, I died. And everything that was carefully put in place for and with Kathleen, not only carried on smoothly, but even adapted to her ever-growing and changing needs and she lived happily ever after until her time was up too.

But then, invariably, I wake up from this lovely dream.

And the nightmare begins…

On a loop…

Maybe it’s because I’m going to hit the big 6 soon.

Maybe it’s because Kathleen did try residential college once and it was an epic fail.

Maybe it’s because I’m starting to realise that if I’m really lucky (or rather if Kathleen is lucky), I should have another 20 decent years in me before I turn into the one needing looking after instead of caring, fighting for and being on constant high alert for my adult-child with a learning disability (LD) . There’s a myriad of reasons why it scares the living daylight out of me, each one equally valid and a potential pitfall for depression, a cliff I work daily at staying away from but one that keeps drawing me close.

Maybe it’s because I’ve witnessed many of the things that can go wrong when an adult with a LD goes into some type of supported living accommodation, no matter how great on the outset and/or on paper, and/or in practice; or goes to hospital for a procedure. Never mind when those adults don’t have the luxury of a loved one to keep a watchful eye on them (not that it’s a guarantee!).

Maybe it’s because I’ve witnessed how difficult it can be at times for carers/personal assistants to manage challenging behaviours (I’m aware not everyone is happy with using the term “challenging” but I stand by it. It may be worth another blog post in the future…). Such behaviours can sometimes drive ME to tears but I keep on showing up because I’m her mother and I love her to death so I keep searching what the trigger might have been and whether it can be avoided in the future, and you know what, sometimes there are no explanations. Carers/personal assistants are employees and no matter how much they might like our adult/child, they don’t love them to death, and they have a choice to either keep showing up or decide to not put up with this and move on to another less challenging “employer”. And then, the whole recruitment process starts all over again… Or they stay and their level of professionalism, compassion, patience and tolerance might end up declining as a result; not ideal.

Maybe it’s because I have the dreaded lived experience through my sister with a LD who passed 10 days after her 61st birthday. Corinne died in a hospital. All alone. We had Whatsapped from her hospital room 2 days prior. It’s been less than two years since and I haven’t yet digested it.

See, 20 years from now, Kathleen will be in her forties. Ironically, it’s when she could start needing much more support and will be so much more vulnerable. Dementia might have hit by then, or might 10 or 15 years later, or not at all, who knows? What is sure though, is that when she becomes an orphan, everything we will have put in place together with great consideration and efforts, will need regular REchecking, REthinking, REstructuring, REassessing, based on her changing needs and wants, until her time is up. Who will do that? Who will make sure the new settings will always be in her best interests and carried out as set out? Whose onus will it fall onto that I would be happy with?

Partners, if you have one, can step in and take over, you may reply. No offence to my hubby, but when I’m 80, so will he (even if he enjoys reminding me he’s 9 weeks younger than me!). He won’t have a clue about the LD world much, because while he was busy being a great provider, I was busy being the main carer. I still can’t grasp it all as it is, and every time I think I might, the rules of engagement change… Also, he might have his own health issues by then, or he might pass before me (God forbid, I definitely want to go first!).

Siblings then, if they have any, could step in and take over, you may reply. Look, some do and that’s great, but 1) what about when they themselves die or can’t live up to their promise due to work placements, illness, relationships, etc…? I don’t know about you but my other 2 children will also be in their early forties and might have already struggled worrying about their elderly parents! 2) Let me stop you right there and then with a ginormous red sign: NO!!! Hear me out: I’m the last of seven children, my sister with a learning disability was number 5. My mum ended up a single mother of 7. Our dad was never able to step up to the plate. Had I been the only sibling, I would have never left the nest at 18, studied, worked and lived in different countries across the world, leaving my mum and Corinne fending for themselves. I would have had to turn down all those opportunities. And while I would have done so with love, I’m pretty sure there would have been days (you know the ones) when I might have wondered, what if? I’ll be forever grateful to my other 4 siblings (one of them did jump ship completely) keeping watch so I could satisfy my wanderlust over and over. Kathleen has got 2 younger siblings. I have told them many times I would never expect them to one day fill in my empty shoes but rather to walk into their very own while keeping a watchful eye over their sister as much as possible. They will have enough to grapple with in today’s fast changing world (politically, legally, socially, financially, ecologically) . They have their own wonderful and exciting dreams and aspirations and it would kill me to know those could be hampered or crushed because of Kathleen. All I ask is that they don’t cut ties, visit every now and then, be aware of any potential signs of neglect/abuse, and hopefully choose their partner wisely so they are inclusive of their sister (again, my totally unexpected lived experience). Living near her, visiting often is by no means a guarantee of no abuse; my own siblings did all that for our sister and yet she was not immune to all sorts of abuse throughout her life in many different settings, sometimes by other service users/residents, sometimes by carers (clever, predatory and devious ones). So no, I would not find peace in knowing my other 2 children would take over as the ones making sure Kathleen is happy. No emotional blackmail from me (not even remotely unconscious), just live your life, Oh The places You’ll Go (Dr Seuss) type of thing.

Never really thought about it for the first 20 years. Too busy with 3 young children! Too busy loving them, advocating for Kathleen, enabling all their aspirations, teaching them, being in awe of them and their milestones, reading and falling for all the great inspirational stories that would almost make us believe that nowadays most people with a LD can live life, work, be in a healthy relationship and that all it takes is the right support (oblivious to the huge spectrum that is LD, as well as many other contributing factors). But many a times, too busy taking her through that never ending list of medical appointments, therapy for this, therapy for that, filling in confusing paperwork, fighting for her rights, trying to figure out how to get to the bottom of this or that issue, etc… Searching how to love her the way she needs to be loved instead of loving her the way I know how.

More recently, that heavy mental load that forces parents to remain in the present (which is a good thing, I’m not sure we could cope if we also had to tackle the ifs and whens of our mortality!) has shifted to the need/urge of projecting in the future.

Maybe it’s because, no matter how challenging and successful those past 24 years have been, and I certainly don’t define success by her achievements but by how happy she is, the truth is, just when you think the worst is over and you can sit back and relax and witness the fruit of your labour, like you hopefully do with your mainstream children, having fulfilled your child’s potential to the best of your abilities, you realise that particular child’s happiness and wellbeing have always been down to you and your privileges: your support network if you have one, your availability, your financial circumstances, your mental health, your physical health, your location, and most of all, your capacity to navigate the complexities and absurdities of the LD world. And the day you stop being vigilant is the day your child is 100% vulnerable, at risk of being swallowed up by the system, at the mercy of those who are supposed to look out for them, those who should be guided by seemingly abuse-proof regulations. Sometimes, it’s not even because you stopped being vigilant, it’s just that you trusted the system and lowered your guards because you had no reason not to.

Maybe it’s because, as the 2021 LeDeR report indicates, people with a LD die decades younger than people without a LD (22 years earlier for men, 27 for women; the gap is even greater for those from BAME backgrounds). Reading coronial inquests on George Julian’s website (or twitter @GeorgeJulian) is not for the faint-hearted but is very eye-opening. If you don’t know who George Julian is, I would urge you to look up the invaluable work she does. She is the ONLY crowdfunded journalist in England (most likely in the UK) who reports “coronial inquests into the deaths of learning disabled and autistic people”. Let’s say she’s hardly welcome with open arms at those inquests. She was inspired by the case of LB aka Laughing Boy who died in a local NHS-run short-term treatment and assessment unit on July 4th 2013. He was found dead in the bath. It was the first time George Julian reported an inquest and she has since made it her mission to carry on with as many as she possibly can. (Just for your information, coroners cannot blame anyone or say who was responsible for the person’s death, they can make recommendations to stop it from happening again in a document called Prevention of Future Deaths Report, recommendations that don’t have to be followed and that NO ONE checks have been implemented!).

You may say this is over the top doom and gloom. I wish you could prove me wrong. From where I’m standing, from what I’ve been reading, witnessing, I don’t think you can.

Sadly, this is not just about Kathleen’s future without me. It’s definitely not just about Down syndrome either, it’s about all people with any degree of a LD, never mind other or added challenges such as autism, being non-speaking, having physical disabilities, complex medical needs, being elderly, and anything else you can think of. It’s about all of us, regardless of political views or financial status. Shouldn’t it alarm us all? (1.5 million people with a LD in the whole of the UK, of which 1.3 in England).

Thing is, it doesn’t matter how tight policies are, whatever the setting (hospitals, care homes, nursing homes, supported living accommodations), it always comes down to management and staff choosing to support their service users by following and implementing procedures and holding accountable those who don’t. Some do, some don’t and get away with it until a whistleblower comes along (and even then, it doesn’t mean there will be accountability or that remedial action will be taken). Sometimes it will take an undercover journalist, say from Panorama to expose the extent of the abuse. And even then, court cases drag on for years, sucking the life out of relatives when there are any at all, fighting for justice (only those who can just about afford it, financially, physically, emotionally). In other words, it’s pure luck of the draw. Cases depicting physical/emotional/sexual abuse and neglect in settings for vulnerable people are rife all over the UK (and further afield, no doubt), see articles at the end of this blog.

In the end, maybe, just maybe it’s because I want to stop thinking once and for all that it would be better for Kathleen if she died before me (although that would destroy me). Let that sink in for a minute. Am I a monster for having those thoughts, or are those thoughts an inevitable by-product of how things work (or rather don’t work) here? I keep thinking of my 86 year-old mother: whenever her grief for my sister is at its worst, what gets her through it is that she doesn’t have to worry about what might happen to Corinne anymore. I get it, I so get it. I don’t want to think like that, though. I want to be able to picture Kathleen enjoying her life fully right until the end. I don’t want it to be wishful thinking…

I don’t mean to give all support workers/carers/personal assistants and care homes a bad name. I know there are good ones for sure, but at present there are no means of filtering the bad ones or making sure the good ones remain so. While there are many ways to rationalise why someone who is supposed to provide care turns into (or turns out to to be) a bully or a predator, none should ever be acceptable and all should be punishable! I don’t know if a panacea exists but perhaps we could look into fixing some of those factors: lack of accountability (and not just the employees and shareholders but all stakeholders), difficulties in providing acceptable evidence in a trial/inquest, high staff turnover, shortage of staff, lack of training, funding pressure, low pay Vs high responsibilities, no time to read through the thick files pertaining to each patient containing pertinent and essential information (feeding, sleeping, how to avoid and tackle known triggers leading to challenging behaviours for example), mergers and/or acquisitions, management buy-out, change of leadership, employment of learning disability nurses steadily decreasing, lack of transparency in financials (shouldn’t councils demand upfront how their £300k/a year/person are spent, shouldn’t there be a law somewhere making sure shareholders’ ROI cannot impact the level of care that is promised by their organisation?). The list goes on.

I don’t know, it’s a long shot but perhaps one of you will be aware of a fail-proof best-practice somewhere, in the UK or some other country, one we could perhaps make sure all care homes or similar settings are legally bound to follow? Could AI perhaps have a positive role to play in that field? As I said at the very beginning of this post, I haven’t got a solution, just plenty of worries, but I sure hope someone will come up with one sooner than later…


Further relating reading:

CQC inadequate care for learning disabled and autistic people, March 2023

CQC outstanding care for learning disabled and autistic people, March 2023

Care home resident Peter Seaby died with carrot in throat: article, inquest

‘Indifferent and harmful’ practices at private hospital where three patients died, report finds. “Mr King’s mother, Gina Egmore, said his death was a “scandal”, adding: “If you ill-treated an animal, you get put in prison. But people ill-treated my son and they’re still free.”

“A systemic failure to provide basic physical care on NHS mental health wards is killing patients across the country, despite scores of warnings from coroners over the past decade”

Government ‘to cut £250m from social care workforce funding’ in England: With more than 165,000 care worker jobs vacant, and low pay driving staff to quit for better wages in retail and hospitality, care providers and councils have been clamouring for investment in recruitment and retention. Inadequate staffing levels are frequently noted as a cause of neglect and poor care by the Care Quality Commission.

“The inquests I attend are inquests into the deaths of people who are dependent on the care and support of others for happy and healthy lives. It’s worth saying that many organisations are paid huge sums of public money to provide this care, yet there’s often no care about it at all.” George Julian

Building back with better data: The importance of collecting and recording appropriate data on people with learning disabilities in Scotland

There is no system of coroners’ inquests in Scotland unlike England, Wales and Northern Ireland.  Accidental, unexpected, unexplained, sudden or suspicious deaths are investigated privately for the local crown agent, an official called the procurator fiscal.  Only certain types of death are investigated further at Fatal Accident Inquiries (FAIs).

The Scottish Learning Disabilities Observatory was set up to generate evidence and build understanding of the causes of poor health and health inequalities experienced by people with intellectual and developmental disabilities. Alongside this we deliver a programme of world class, evidence informed research.

CQC (Care Quality Commission) is the independent regulator of health and social care in England

Care Inspectorate is the national regulator for care services in Scotland.  “We also inspect the social work services provided by local authorities and we carry out joint inspections with partner organisations”

Learning Disability Statistics Scotland, 2019

SCLD: Scottish Commission for People with Learning Disabilities

From George Julian’s website

Some rays of sunshine: Growing Older Planning Ahead (@OlderAhead on Twitter), and FlourishingLives

List of documentary/movies worth watching:

Watch Tommy Jessop in BBC Panorama: Will the NHS Care for me?

My Feral Heart : “A sudden bereavement forces an independent young man with Down’s syndrome into a daunting new environment. Warm-hearted yet hard-hitting drama”.

An Irish Goodbye: Set against the backdrop of a working farm in rural Northern Ireland, this Bafta and Oscar-winning black comedy follows the reunion of estranged brothers Turlough and Lorcan following the untimely death of their mother. 

Teacher of Patience Over 20 years after Emily Felter is diagnosed with Down syndrome, paramedic (and Emily’s father) Tom develops a presentation to share her story with other first responders. As the Felters work to raise disability awareness, they come face-to-face with the struggles and joys of their daily lives.​

The Peanut Butter Falcon The film follows Zak (Zack Gottsagen) after he escapes from the treatment center he lives in. Zak has Down Syndrome and wants to live on his own but due to health issues and a lack of family to care for him, he ended up in a treatment center where he does not feel at home.

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