The New Normal – reflections by Pat Graham

The New Normal

“I heard someone say on the radio when we first went into lockdown that we would all struggle to cope, and then after a couple of weeks, it would become the new normal. So here we are at the new normal. Who would have thought that life could be so different within such a short space of time?

I can’t imagine that these differences are welcome for anyone. In our case, the staying at home in itself isn’t a hardship. We’re catching up on chores and keeping the steps up with regular walks around the park and like all the other old codgers walking around in pairs we’re muttering expletives under our breath at the runners breathing too heavily. The house has never been so clean. However, one of the unwelcome differences is that we can’t see our daughters who live at a distance, but we can text, phone and skype, and that of course is manageable. Our other daughter, Lauren, though has a profound and multiple learning disability and lives in supported accommodation. Although she lives only 20 minutes away, we are no longer able to visit or to have her home.   She can’t text, phone and skype so communication is really difficult. She seems to be coping remarkably well with the change in routine and when we’ve skyped, she’s not in the least bit interested because she’s far too busy doing fun things with her staff.

Any parent in a PMLD family is very familiar with the presence of constant anxiety in their life. We worry about our child (of whatever age) whether they live with us or somewhere else. We stress about their health, their education, their development, their emotional wellbeing, their physical condition. The list is endless and the anxiety omnipresent. The worries can vary from a constant backdrop to everyday life, to a continuous creeping dread with peaks and trough depending on a myriad of daily occurences. Something as cataclysmic as Coronavirus embodies all of those anxieties and gives them life. It provokes all of those questions that we hoped never to have to ask, whether medical, pragmatic, financial or ethical. The safeguards that we’ve so carefully constructed over the years to protect the life of our child are swept away in the blink of an eye.

But the need to protect and provide for our PMLD child is so deeply embedded in our psyche that our instinctive reaction is to enter coping and solution mode so that we can work out what to do, should the worst happen. Everyone’s coping mechanisms will be different, but mine is to be busy, busy, busy, to keep the demons at bay. So, for the last two weeks I’ve been preparing all sorts of resources for Lauren’s staff to use to entertain her. I’ve been updating her digital passport in case she has to go into hospital. I’ve been trying to support her staff by searching for things that they’ve struggled to find, such as thermometers, face masks, soap and even potatoes during the peak of panic buying. I’ve made 2-hour round trips to get prescriptions to save the staff having to do it. I’m emailing and tweeting anyone I can think of who might bring some influence to bear on the plight of people with PMLD. I’ve been supporting PAMIS as much as I can in all their efforts on our families’ behalf. Other families don’t have that luxury because they are too busy looking after their child at home when they would usually be at school or day service. To my knowledge, few of those families have been offered the support that they desperately need.

When I thought about writing a blog for PAMIS’s website, this wasn’t really the blog I had in mind. I had planned to write about the resources that I’d created for Lauren to use in her house, and I might still do that, but it turns out there were a few things that were praying on my mind. One of those is that while this time of Coronavirus will go down as one of the most frightening and cataclysmic periods in most people’s experience, it is also true that there is a glimmer of hope that some things may change for the better. Here are some that have occurred to me:


  1. That frontline paid carers will be recognised for the hard working, highly skilled professionals that they are (and always have been) and paid accordingly. As a result of Coronavirus they not only do their jobs, but they effectively put their own lives at risk to look after vulnerable and frail people who are unable to look after themselves, frequently without the protective equipment that they so urgently need.


  1. That NHS staff will be given the recognition, resources and salaries that they deserve.


  1. That charities like PAMIS which have always fought so hard on our behalf and even more at present, will be recognised for the essential and innovative work that they do and funded accordingly.


  1. That the people who have volunteered their time and efforts so generously will realise that their contribution is so intrinsically worthwhile that they will continue to volunteer long after the pandemic is just a painful memory.


  1. That there will be many lessons learnt about how we treat the environment.


  1. There have been many examples of people treating each other with consideration, respect and empathy. How wonderful it would be if that were to continue.


  1. We’ve learnt that we are so much more resilient than we thought we could be. We’ve found out that some of us have inner reserves of creativity that we had no idea we had. We’ve realised that there are so many things that we thought we couldn’t live without that really aren’t so important after all. We’ve sought out solutions to problems that we didn’t realise could even exist. We will know things about ourselves that we would never otherwise have found out.


  1. In a post-Coronavirus world my most profoundly held wish is that at last, as a result of all the ethical debate that has taken place, it will be a commonly held view that people with disabilities of whatever nature, will be recognised as having lives that are very much worth living and have value to all of us.


For PMLD families there is little information in these observations that is new to us. This is how we have always had to live our lives. This is how we have managed to find value in what other people might consider unthinkable. After the Coronavirus crisis, this is how PMLD families will continue to live our lives.


Ultimately, it has taken a pandemic to show that everyone is just a little bit braver and a little bit kinder than they thought they were.”