Living and not existing: Finding our new normal




Hello all, greetings, it seems like a very long time, almost another life, since the last blog and newsletter in March.   Just a few weeks ago, we were  in the early stages of setting up East Lothian’s first Meeting Centre in Musselburgh after a very successful and lively Community Meeting with the Musselburgh Health and Well Being Group of the Area Partnership.  We were looking forward to the launch of Community Matters  – monthly talks at the Community Hospital planned for 3rd April. Professor Alan Gow from the Ageing Lab at Heriot Watt University was going to tell us ‘What Keeps us Sharp’.  We’d got lots arranged for Friendship Groups, planning for the Life Changes Trust’s Community and Dementia Creating Better Lives events and the launch of Dementia Friendly Yoga at the Scottish Gathering of the Dementia Engagement and Empowerment Project.

And then Covid 19 took hold and the world changed; possibly forever, probably for everyone.  For many, the last few weeks have been hell; for some tragic and sad beyond words; for others boring and frustrating.  We’ve seen acts of courage and bravery; compassion and love  in large and small acts of kindness. We’ve developed new skills and rediscovered old ones, made bread, phoned old friends or lived a life on zoom. We’ve sewn scrubs, shopped, befriended and donated time, money and care. I’ve been deeply touched and inspired by the many acts of  kindness and support both large and small, across East Lothian and beyond: Our resilience and shared humanity have shone through.

I know I wasn’t alone when my world shrank in mid March and I had to focus on the place where I live and the Community Emergency Resilience Plan.  People needed practical support – shopping, prescriptions; we all needed to feel close even if we had to stay physically distant and  get to know neighbours in a new way.  Since early March, I’ve been working with a great team of local volunteers to keep people most at risk and very isolated feel safe, fed and connected.   These Community Emergency Resilience Teams – all volunteers –  are working across East Lothian doing the same thing and so I knew you could get the practical help and support you needed. It felt very strange and I missed you.




I’m very grateful to Michael Huddleston from Alzheimer’s Scotland  for holding the DFEL fort over that time and for providing the East Lothian Community Resilience teams with advice about supporting people with dementia and carers. Thank you Michael.

I was touched, and so happy and grateful when you phoned or e mailed, just to say hello and tell me about your lives in lockdown.  For some of you, lockdown has been a period of peace, for others, it’s been a nightmare. Many people with dementia have been frustrated and confused by disrupted relationships and routines and not being able to do the simple human things we’ve done our whole lives.  Many carers have  struggled with managing their own and others’ powerful emotions without the strategies and support they use to cope day to day.  There have also been cases of carers being stopped by the police and criticised in shops or by neighbours when they were simply caring for someone with dementia. We’ve worried about our friends in care homes and community housing. Many thanks to the East Lothian Health and Social Care Partnership  for keeping us in touch with wonderful photos showing our family and  friends looking well and so happy.

Now that much of our emergency plan is in place and working, I’ve been able to look at Dementia Friendly East Lothian and what it means for us to be together and support each other in this new world.  I’ve started to  send out letters again and posting on Facebook. But it’s going to be a long time before many of us can meet again in real life in Friendship Groups or at DFEL Gatherings, so we’re looking at a new strategy to keep in touch – for friendship, support and to talk about the things that matter to us.

A small group have met on  Zoom to talk about the future and we’re starting regular get togethers on line, every Tuesday at 11.30 – 1.00.  We are planning to set up a virtual Meeting Centre for  East Lothian and other groups online.   We’re also looking at options for people who can’t join us on the internet and whether we can use the phone and letters and some more innovative ways to stay in touch. If you have dementia or are a carer, family member or friend of someone who does, get in touch to find out more.

It may be a while before we meet in person, before we have our next Gathering.  Until then, we will find ways to keep our friendship going and we will all work hard to make sure that we continue to live and not just exist.

Take care, stay safe

Sue x

Sue Northrop

Director, Dementia Friendly East Lothian CIC

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