“Corona virus may force doctors into deciding who lives or dies.”
New York Times
“We are making difficult choices.”
“Many loved ones will die.”
The plan this weekend had been to visit my sister Fiona, a 55-year-old woman with Downs Syndrome, at her residential care home in Kent. These visits have taken place once or twice a month for the past 35 years and the format I undertake with my 91-year-old mother is a well-oiled routine, a sequence of familiar actions punctuated by stress relieving rows. A standard Sunday pick up – these days – shapes up thus; I drive us both through winding B roads, bickering with ascending intensity until muted by Elaine Paige’s romp through the musicals on Radio 2. Wine gums are chewed, pedestrians along the route doing out of the ordinary things are remarked upon, houses for sale are noted, houses desired smiled at, driving choices criticised and news bulletins tuned into on the hour. Eventually, with loosened fillings and raised blood pressure, we swoop down a twisting lane which opens out into a stunningly beautiful valley, a garden of England picture postcard arrangement of oaks and dirty sheep and rhododendrons and we arrive. The care home has 70 plus residents with severe learning disabilities, living in groups of between 6 and 8, in an assortment of 1970’s chalet style bungalows, most named after a bird and a couple named after trees- perhaps after all the accessible bird names had been used up, the kind of distracting rumination I’ll use to diffuse the inevitable pre doorbell argument and in we go. Over the three decades that Fiona’s been resident in the house there have been countless carers on the staff, some brilliant and some appalling, a couple of eye wateringly successful thieves who helped themselves to residents’ money and belongings but in the main hard working, poorly paid and undertrained people who want to do the right thing. Fiona is found either in the living room or conservatory, she grunts an acknowledgement, her cheek is offered and kisses given, fellow residents either ignore or ferociously engage me in conversation and after some encouragement we all make our way into her bedroom. Medication is signed for and I pack her bag while my mother converses with a carer, enquiring after activities undertaken, pottery, trips to the pub, her weekly attendance at a group in a neighbouring town and whether Fiona needs anything to be purchased. Invariably there is something required and this younger sister groans at the idea of wandering around Matalan resulting in another row as we leave the house. However, Fiona gets to spend time with Mum and for both of them this is precious and for me it’s precious too in a slightly different way because in between the rows and the reluctance love exists and there’s always a hollow feeling on the return journey and on leaving her again. It’s painful and it takes trust, which walks hand in hand with its darker companion – fear.
Last Wednesday, which already seems an epoch ago in terms of the coronavirus crisis, it had become clear that the elderly and those with pre-existing health conditions and, like my sister, with severe disabilities, were most vulnerable to infection. I had a cold and knew that both my sister and my mother needed to be protected from my germs but, more crucially I was concerned about my sister becoming ill while at home with us both. She’d be unlikely to co-operate with medical intervention, could deteriorate very quickly and then wouldn’t be able to return to her care home. Although my mother is a robust and pretty healthy 91-year-old I was aware that the ‘risk’ box in this particular swat analysis – headlined the pros and cons of Fiona coming home for a weekend – screamed in a bold red font.
I emailed the care manager and suggested that we postpone our planned trip this weekend, that Fiona stay where she is and that we would re-arrange at a later point. I asked if perhaps we could Skype or What’s App video call so that vital contact can be maintained. Fiona’s limited communication and speech means that without contact and re-assurance she can quickly fall into a very lonely and lost place. Her understanding exceeds her ability to express but how could she possibly understand that her mother and sister have just disappeared? Except to imagine the worst, she has like all of us experienced death and deep grief but to go through that due to a lack of contact is a horrific thought. The reply to my email came quickly, I’d pre-empted the home’s plans to lockdown which it then proceeded to do and we were assured that Fiona’s safety was a priority.
The concern for Fiona and her fellow residents is twofold. One is of direct infection with Covid-19 and the other is the fallout from staff sickness. The doors have shut to the outside world in terms of family visits but care staff are people too and it’s likely that at some point the virus will enter this enclosed population. In common with many people with Downs Syndrome Fiona has always struggled with colds, with breathing and the Coronavirus might affect her very badly. She needs twenty-four-hour care, help to dress, eat, wash, go to the toilet and make choices. In an emergency situation, if staff numbers fall drastically and residents are also ill then what happens? What choices are made and by whom? Has all contact with the outside world and all activities stopped for all residents and what’s the effect of that? Do doctors come into the home? Do residents go into hospital? Are we freeing up ICU beds in order to treat people with severe learning disabilities?
I don’t want to ask those questions because I fear the answers.
Reports over recent days suggest care homes being given ‘emergency’ powers to make decisions for their residents, in camera. Where once there was scrutiny and transparency with regard to the care of the most vulnerable members of society now the drawbridges have come up and the curtains have been firmly closed, so how do we trust the right decisions to be made?
I’ve written about the Nazi holocaust of people with disabilities in my play Hypothermia and find the parallels in language and inaction of that de-sensitising process with our current crisis chilling.
What we can do…
Individual and collective action may help.
I’m formulating a letter and mechanism which means all relatives attached to residents at my sister’s care home have at least the means to communicate with and see their loved ones via the internet and suggest that this is rolled out wherever it’s helpful – even if it’s just using someone’s mobile to make a What’s App call to the outside world, it will make all the difference to my sister and may well do to others.
We need to make people aware of what’s going on in residential care homes, that there are whole communities which are being cut off and finding digital ways to reach these people. My Separate Doors project has involved face to face contact but it can work just as well virtually, providing people with learning disabilities with a means to meet and connect and I hope Arts Council England will support this work in this way moving forwards, its so needed.
With whatever democratic tools are left and to hand we need to make sure the right to life of people in care homes is articulated and upheld and we must keep the voices of the voiceless heard.
I don’t know when or if I’ll see my sister again.
Right now, a bad-tempered drive through the Kent countryside with a grumpy mother, followed by a reluctant shopping trip with a sister in tow, would be absolutely wonderful.