Like ships in the night, I have seen many millions of opinions shoot past about visiting loves ones in care homes. My loved one is with me at home, but she has advanced dementia. Not everyone who’s a resident in a care home has a dementia. I get that. But I would like to put down on paper a personal opinion about this. This was provoked by an excellent comment made by Vic Rayner in the Commons Health Select Committee this morning.
Vic Rayner emphasised the importance of relationships in social care. I couldn’t agree more. It happens to be a pivotal part of the ground-breaking work that Prof Julienne Meyer led on. Relationships are a crucial part of preventing burnout in staff, and they are also in understanding the resident as a person. It’s impossible to understand a person without understanding his or her social context, people who do or don’t matter to them, and the people who light up a life.
I worry that – and there are many people like me – that mum will soon forget who I am if I leave for too long. I have her nextdoor to me basically. But imagine if I had to be without her for a week. I’d be heartbroken. I often ask her if she remembers who I am, and sometime she hesitates. When she can finally remember, I feel as if I have won the lottery. It’s that one confession that keeps me having a tangible link with my mother. She can remember me. She can possibly remember giving birth to me. She can perhaps taking me up to school or university.
In about 1881, a famous French neurologist published on a theory of the formation of long term memories. Paraphrasing what he said in French, Ribot wrote ‘the old perishes after the new’. Speak to anyone with moderate or advanced dementia of the Alzheimer type, the person will find it much easier to remember what he or she was doing six years ago, compared to six minutes ago. I find that making a connection with me keeps her in the present. I think divorcing mum from me would be very upsetting for her – and very upsetting for me.
But it is also important, I think, to be open about a certain taboo. That family carers are essential care partners. When for example mum has to go into hospital for an acute emergency admission, I get a massive sense of loss as all the care transfers from home to professionals in a hospital. There are, furthermore, certain instances when my account of what has been happening is important, not being hyperbolic about my own contribution. A way of ascertaining whether mum has had an acute change in personality and behaviour, through delirium, is by asking me. Delirium is a medical emergency. Secondly, I know mum’s past medically, and can overcome any cultural including language difficulties. Thirdly, I can act as a reassurrance to mum while she goes through the distress of being a patient with an acute medical emergency. Finally, if care is not appropriate, such that someone does not treat her with dignity or totally misunderstands a situation, I can contribute to help. Unfortunately, it happens to be the case that in health and social care environments people can feel threatened by unwelcome additions to the care team. I’ve experienced this myself when one member of a care team actively makes an official complaint against another. But, when it works well, we can all act together, united, to help the health and wellbeing of people we love.
I understand how this conversation has become one of process and procedure, infection control and even dispute resolution. I could theorise for hours, even days, on the jurisprudence of the human rights involved. But I feel it’s fundamentally a lot more than that – the inhumanity of the separation from people we love. As was put a long time ago, care homes are not fortresses or prisons – they should be somebody’s home. Turning them into prisons is not a proportionate response. It saddens me deeply that so many people have clearly lost their way, but I am heartened by some exceptional leaders such as Kate Lee, Dr Jane Townson, Prof Adam Gordon and Vic Rayner on this.