DS CEO Reflections during these times;
06-06-2020 – Week 11
I’ve moved now to a fortnightly blog, not least as things are stepping up regarding getting back to some assemblance of normal but in order to do that there is so much planning and preparation required that it needs some energy.
I took some time off at the beginning of this week which did me good. I’ve worked each weekend so far throughout this, as have some of the team and I was exhausted and risking some burnout if I am honest – several people, trustees and my team pointed it out and for once I actually listened. The issue I had with the whole taking time off thing during this time is, what exactly can you do? Not wanting to harp on about being single, but there is only so much of my own company I need, when you cannot go see anyone or really do anything….however I happened to coincide my time off with further “ease down” of restrictions [another new phrase to get used to] so I took myself off to sit on a pebbly beach on a beautiful summers day.
Possibly it sounds a little romantic but what I was struck by was the simplicity of this and how good it felt – at the time I thought it was just me relaxing and being mindful but my reflection is that I think this is what Covid-19 might well have done for a lot of people. Suddenly all things taken for granted are meaningful and I really do hope that we hang onto that long past our “new normal” (another phrase that’s wearing a little thin with me).
I have decided I don’t want to learn any new words now ever again as it reflects ‘unprecedented’ [personal hate word] situations and not positive ones. My everyday language like everyone’s has widened to include phrases and words such as lockdown, easedown, the R number, shielding and social distancing and more importantly so has my granddaughters which is still making me cross.
I am also cross that my granddaughter who has been in nursery throughout due to my daughter being a keyworker was drawing and decorating face masks at nursery to familiarise her with what they are……a fantastic and clever move by the nursery and I am not cross with them at all, but just with the situation. The staff are going to start wearing them as more children come back to school – like everyone I don’t want this weird world for my little bubba and I worry about the impact on all of the children in the future.
My sleep pattern is pretty normal now, certainly lesser amounts than before in fact probably 50% less but at least unbroken most nights which is something. My head is also still foggy quite a lot – a lot of people are saying the same – it could be just the monotony of the current situation I am guessing, operating on nervous energy permanently.
I am certainly back to my old world now of Vision and setting in place strategic response plans. Being honest I was worried about returning to that world a little as I was enjoying and needing to be part of the operational response to Covid – the need to contribute during the early stages was so very important to me.
As a team we have chatted through our next steps and what that might start to look like. We are going to commence un-mothballing Sage House next week which makes me very happy. I am keen to see it wake up a little as I find it so empty when I pop into certain areas. We are planning to get some of the team back from July but of course before that can happen we need to undertake all of the risk assessments, audits, order the PPE, write all of the policies and processes so it isn’t a quick turnaround by any stretch. Luckily what we do have is space enabling us to do this safely, but there will still be the worry for some of returning – again something that everyone is experiencing. Sadly we cannot open Sage House to customers until government guidance changes around being indoors with someone but we watch and wait and hope that this won’t be too long.
Four of our customers are in hospital at the moment – thankfully not Covid related but still it is a worry and a high number by ‘normal’ standards. Hospital’s do not tend to be the best place for anyone I guess, but are generally even more of a difficult environment for someone living with a dementia who generally benefit from being in familiar surroundings and certainly surrounded by friendly faces who understand how to best communicate. Hospitals do not lend themselves to this largely speaking at the best of times – that isn’t to devalue what they do at all but sadly time and patience is a large part of what is required and the former is certainly not something available to our amazing NHS workers. The current situation is of course made more difficult as our carers are not able to visit their loved ones and furthermore they are being instructed not to telephone the hospital as they are so busy. I get it – I really do and I’ve a massive amount of respect for the work our hospitals do, but surely they must appreciate how challenging this must be for our carers and moreso their loved ones who can’t really work out what is happening, where they are or where everything and one that they know has gone. Thankfully there is a dementia nurse at the hospital who we know and who will keep an eye to our customers, but the situation makes a knot in my stomach that cannot be undone.
I am still missing seeing the customers and carers coming into Sage House and I know that as the lockdown for those who are in the shielding category carries on that the anxiety and stress on our carers to find ways in which to occupy and support their loved ones is so high now. We can see it in the call numbers into the Wayfinding Service which increased 61% (131 calls) in May from April.
The team continue to think of new ways to support our customers with various films and activities – virtual coffee mornings are proving ever so popular and we are joining with our partners at Carers Support West Sussex next week to deliver some activities and sessions as it is National Carers Week. We’ve also made some great links with some local residential and nursing homes who are using our social media and online activities to support their customers and what is lovelier still is that some of their residents are old customers of ours which brings such a lovely feeling that we are still part of their life.
I find the care home and Covid situation however such an awful one and I am cross at the lack of guidance available – 42% of people who have died of Coronavirus in a care home have a dementia, in fact 25% of the population of people who have passed of Covid had dementia and yet still no guidance. Care Home Managers themselves – in fact 79% of them are saying that lockdown is damaging their dementia resident’s physical health and wellbeing. They are trying to confine residents to their rooms – impossible for a lot who like to go walkabout, meaning such anxiety and agitation as they are returned time after time by a strained staff team. The physical touch is minimised – PPE still problematic and so many people need the tactile approach to make them feel reassured. Lack of family contact and their understanding as to why is causing deep sadness and there is already a strong connection between dementia and depression. I could go on but I am so frustrated with the whole situation and there is no one to shout at as it is Covid…..
Government has just announced that anyone travelling on Public Transport need to wear a facemask. Those who follow this will know our Mr P and how he likes to go out on the bus most days. He has been really quite perplexed as to why some people on his general travels have been wearing masks – as I mentioned before the concept of a virus really doesn’t mean anything to him. I have absolutely no idea how we are going to get him to wear a facemask which will mean that he will certainly be trying to get onto buses without them which will mean people will likely get cross and upset with him, which he really will not understand why and serve to cause him a huge amount of confusion and upset. We will work with the bus company and his social worker and carers, but this isn’t going to be easy and I fear Mr. P has some tough situations to face in the next few weeks.
A further 1400 small activity packs arrived this week and they are pretty much all now allocated and ready to go out – it’s quite phenomenal how popular they have been and people are just so keen to have anything that can help relieve the boredom that they just fly out of the door as soon as they are available. Another thing for us to consider for the future as Carers tell us they are such a great resource.
Dress Up for Dementia (D4D) is still going strong – it’s a bit of fun that some find a useful distraction and it raises a little money so it is worth doing for both reasons – we even have a chihuahua that makes an effort each week and I am hopeful that the local schools, now that they are returning will start to get involved. Certainly my granddaughter has raided the dressing up box each week – my favourite being when we both dressed up as Snow White for Disney week – we are having a Snow White tea party when this is all over and will wear our dresses again – this time I will be able to have lots of cuddles though rather than a socially distanced photograph….
In general, I am seeing light at the end of the tunnel as the ease down continues. Like everyone I fear the R going up and a reversal of some of the relaxation we have seen. I need to see my family and importantly hug and cuddle them – this is the hard bit for me and it now feels like it’s been forever.
However all that said this will pass and we need to keep on keeping on, doing what we can and look to a future which I am starting to get a bit of a sense of now…..and that helps.
We’ve learnt a lot during this and will take the opportunities the next stage presents us with to continue to make a difference to people living with dementia.
A CEO (and middle aged slightly plump Snow White) who is looking forward