The challenges of balancing childcare with a career are relatively well-known; but what of those who find themselves caring for elderly or disabled relatives, whose needs increase with the passing years? asks Writer Ming Ho.
During the 1990s I was script executive at Zenith Productions, working across a development slate of film and TV drama, including the series Hamish Macbeth (Robert Carlyle: BBC) and Bodyguards (Sean Pertwee and Louise Lombard: ITV). I left to pursue my own writing, and co-created a series for Ecosse/BBC Northern Ireland – McCready and Daughter – which was conceived as a vehicle for the late, great Tony Doyle. (Tony sadly died two weeks before shooting the pilot; it was recast and became a different beast, but that’s another story…). As a contract writer on EastEnders, I was proud to work on some of the show’s most memorable storylines of the mid-2000s, such as Trevor Morgan’s domestic violence against timid Little Mo, resulting in her trial for attempted murder. (I wrote Trevor’s manipulative evidence, in which he menaces poor Little Mo from the witness box in the guise of wronged victim.) I went on to write for Heartbeat and Casualty, and life looked pretty good. But ticking away in the background was a time-bomb: my mother’s dementia.
An only child, I had always been conscious that one day I would be responsible for care of my mum. My dad had died when I was a student, so there had been just the two of us since the late 1980s. Mum had been a classical singer in her youth and latterly a teacher: outgoing, warm and generous – much more extrovert than me! However, she’d been an older mother and retired in 1990. Arthritis troubled her and she had a knee replacement, which restored her get-up-and-go for a while; but falls continued to dog her over the years, the most serious resulting in six weeks’ recovery from a fractured pelvis.
At the time, I was working on Casualty (ironically enough!), and decamped to her house 100 miles away from my own home, until she was able to look after herself again. When I went freelance as a writer, I had naively thought that the ability to work from anywhere on a lap-top would be the solution to any such emergencies – I had not reckoned with the relentless demands of a 24/7 production schedule…
Mum recovered her mobility, but was never quite the same. I had been aware that, in tandem with her physical frailties, she had some other issues: she was increasingly repeating herself, and developed peculiar obsessions, rituals, and disproportionate emotional responses – taking a violent dislike to people who had done nothing wrong – which were quite unlike her normal personality. There were panic-stricken incidents of locking herself in or out of the house, being unable to remember her PIN number at the cash-point, and repeatedly losing her bank card. On the surface, however, she seemed fine; friends who saw her maybe once a week for lunch or spoke to her on the phone would not have been aware there was anything much wrong. I was often the only witness to her increasingly erratic behaviour – and, crucially, she herself did not acknowledge any problem.
As her faculties declined, I gradually assumed responsibility for all aspects of her daily life: finances, admin, shopping, cooking, cleaning, laundry, household maintenance, appointments with doctor, dentist, optician, chiropodist, hairdresser – all crammed into my fortnightly weekend visits or longer stays between contracts, with daily management by phone or email in between. At one point, I supervised nearly two months of major building works to remedy subsidence, while juggling commissions for EastEnders and Heartbeat and shuttling the 200-mile round trip sometimes twice a week. Through all this, mum continued to believe that she was 100% independent and rejected all suggestions of outside domestic help.
That’s the thing with dementia – lack of insight can itself be a major symptom, leaving the person unaware of their own vulnerability and often hostile to intervention. Eventually, total loss of short-term memory robbed her of the ability to complete even basic tasks unaided, such as making a cup of tea or washing her hands, as well as capacity to follow instructions or reminders. It made her feel constantly abandoned, because she couldn’t imagine the proximity of anyone out of sight and had no sense of time to recall when they were last there. And by 2011, mum could no longer recognise her own home.
I had to go behind her back to get a referral to social services and a consultant psychiatrist who could give official diagnosis, in order for me to gain a Court of Protection Deputy’s order to formally manage her affairs. All my life, I had dreaded having to put her into residential care, but when things finally came to a head, (in a crisis I have detailed on my blog, Dementia Just Ain’t Sexy, link below), I knew I had no choice.
I found support online and have met a wonderful community of new people – carers, medics, social care professionals and politicians – whom I would not otherwise have encountered. Wanting to do something positive with my experience, I joined Uniting Carers, Dementia UK’s network of family carers, who form a pool of educators, media spokespeople, and campaigners on dementia issues.
Former Care Minister, Paul Burstow MP, approached me via Twitter, and invited me to contribute a case history to ‘Delivering Dilnot’, a Centre Forum report he edited, looking at options for funding of the Dilnot recommendations – I spoke at the House of Commons launch on 8 January, and was quoted in the Backbench Dementia Debate a couple of days later!
I’ve recently started a blog sharing personal insight and analysis of the impact of dementia, which has been read in over 50 countries to date, as diverse as Iceland, Saudi Arabia, Mozambique, South Korea, Brazil, Eastern Europe, and Scandinavia. Dementia is, sadly, a universal issue.
As mum’s needs increased, I found it hard to commit to the full-on schedule of long-running series TV; but I kept up my involvement with the Writers’ Guild, taking part in forum negotiations with the BBC and ITV as Writers’ Rep from the TV Committee, and I’m currently Deputy Chair, with a mission to increase our public presence.
And, of course, I continued to write – I’ve almost completed the first draft of a novel inspired by research I undertook for a spec film script, and have new ideas to pitch. Now that mum’s safely in care, I’m keen to return to my own work in drama and also to explore journalism and factual, using my first-hand knowledge of dementia and social care. It’s all good material!