DS Trustee Reflections during these times;
23-06-2020 – Week 13
Just over two years ago I became a trustee of Dementia Support. A couple of months later, we opened our amazing new facility with the Countess of Wessex cutting the ribbon, and, little by little we became the blueprint of what a place for people living with dementia should be.
Fast forward 2 years and here we are. Locked down due to Covid. Our beautiful shiny hub of dementia excellence forced to close its doors and, due to social distancing, mothball itself for the foreseeable future.
Our customers, our clients -all those who had come to love and rely on Sage House as a place of tranquillity and hope… what would happen to them all?? As a new charity and innovative charity, we could react quickly – if our customers couldn’t come to us, we would “go” to them – even if just virtually. By phone, online, delivering them activity packs. We knew this time of social isolation and lockdown was going to be the hardest time for all our customers and their carers. We weren’t going to just leave them – we would alter our working practices and be there 12 hours a day on the end of a phone line or offering online coffee mornings or singalongs.
Early on in lockdown we were approached to partner up with Age UK, they had vulnerable shielding contacts who needed help and whilst they may not have had dementia we have offered our support and volunteers. Wanting to do what I could, I offered to shop. Whilst it could be said shopping is in my DNA, 2.5 hours going around the supermarket trying to make sure I got each referral their correct requests were (and still is) a challenge. I want to make sure they have exactly what they ask for – I can’t imagine being so reliant on a stranger to get me my shopping – so I try to make sure I scour the super markets for each item. It takes me ages, but the staff at the supermarket are very kind and understand I’m not just shopping for me. And by the time I have delivered to each vulnerable shielding person I’m slightly exhausted but also completely buoyed up by their genuine thankfulness and even the chance to have a socially distanced chat at the doorstep. It breaks my heart that for some of these people shielding on their own, without family or friends nearby, I am their only source of human contact that week. But it can get a bit tricky when I have deliveries of ice cream….
I am immensely proud of being part of the team at Dementia Support. Whilst we have had to furlough some staff, there are many working from home and doing an amazing job. Being a frontline service, everyone has wanted to muck in and do as much as they can. One of the services we’ve offered is the creation and distribution of activity packs. We have put these together and they’re full of puzzles, quizzes, helpful tips how to stay active and lessen the boredom that many are facing. We have had over 2000 of these printed, all needed collating and stuffing in envelopes… too much for the skeleton team still working out of Sage House to do, so with my family we have spent a few fun hours stuffing. Its mindless but necessary. The treat at the end has been delivering… again like with the shopping, the recipients are so grateful it is a pleasure to be able to help.
Although our doors are closed, our staff have remained on hand 7 days a week for our customers. We actively support over 150 people, and our phone lines have been constantly busy. In one week alone in the middle of lockdown our staff had over 1500 minutes phone time for our Wayfinding service. Last week we had 15 contacts from people completely new to the charity. Dementia Support and Sage House is clearly a vital part of many people’s lives.
Fundraising had become a real concern for all charities in this time. Many of our normal channels of raising money have had to be shelved and all businesses are tightening their own belts. We’ve had to come up with some innovative ways to fundraise. I’ve managed to hijack our local pub online quiz and make sure everyone donates. A friend and neighbour whose dear Dad is seriously missing coming to our Sage House Daybreaks services has organised an asparagus run where we collect from a wholesaler and deliver to friends and neighbours at a knock down price but still with a donation imbedded in the price. Many of our other supporters have found different ways to support us, including one doing laps of his caravan park on his mobility scooter.
Our trustee meetings have been forced to all be online and Zoom – a word (is it a verb or a noun??) we never probably knew existed before Covid that has now taken on a new resonance. I miss the social side but we seem to cover things at a greater speed online. Throughout lockdown our board meetings have always fallen on our D4D days where a fundraising initiative is to Dress Up on a Friday (think we’re all getting a bit fed up with our Athleisure wear!) and donate. Seeing fellow trustees dress up and come to an online meeting dressed as a Favourite Superhero or Pop Idol has been very entertaining. I’m not sure we would do it if we were not online…. I know many don’t feel the same but the barrier of being online somehow can give me more confidence to say what I think…. Oh, and our chairman dressing up as superman a couple of weeks back was inspirational. Thank you.
Whilst it’s been very sad that we can’t currently look after our customers in the way we normally do it has also offered us the chance to reflect and see where else we can help those living with dementia. Having cared for my mum who lived for years with dementia and watching her slowly lose the pieces of the jigsaw that made up her wonderful personality, I know just how important Sage House and Dementia Support is. I only wish it had been around when she was. Now I want to make sure as a charity we are there for all of those in our local area and indeed, looking forward, perhaps all over the country, and that everyone has the support and care they deserve wherever the journey with dementia takes them.
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
DS CEO Reflections during these times;
23-05-2020 – Week 9
Reflecting on the Week………
I didn’t write last week as to be honest things are beginning to somewhat settle and my world and day to day work is returning back largely to as it was – I say that but the strategy and vision are of course less clear in fact impossible to still set out and my risks and issues register certainly looks like a completely different document to that of 10 weeks ago of which almost pales into insignificance by comparison.
My sleep pattern is beginning to normalise a little too – I am still surviving on much less than before but also accept that I might just be growing out of my teenage years of needing so much! All that said I am tired all the time.
Since last writing we have seen some relaxation to the lockdown which did turn out to be much as I had anticipated, sadly. Nonetheless it did, I feel, serve to impact the general mood of many that I have come into contact with positively. Just the freedom to go out where one wishes is better than nothing however, it does not solve the sadness of not being able to spend time with your family and loved ones. I think it is fair to say that most people are really desperate to reach the point where they can spend time with those that they miss and I am one of those people. It is making me feel a bit miserable if I am honest – living alone is tough and this feels like it’s just gone on too long. Of course, we all understand we have to abide by the directives but it’s hard and I don’t know about others, but I am fed up and bored of looking at people through screens!
More than ever I am missing seeing our customers coming and going and I know that as the lockdown for those shielding continues on there is more and more anxiety and stress on our carers to find ways in which to distract, occupy and support their loved ones. We are hearing many stories of people’s dementia declining quickly at the moment and that’s only to be expected I guess as peoples worlds have shrunk so much, meaning it is so difficult to cognitively stimulate and find ways to increase wellbeing. That all said the team continue to think if new ways to virtually support our customers with various short films being produced about relaxation, breathing and physical exercise. Dawn Gracie is also streaming from our Facebook Page each Friday and I have to say that we get some amazing feedback from that with local residential and nursing homes tuning in as well as customers who used to attend singing with us each week, the staff team and our great volunteers.
Writing this is odd this week as generally speaking, I feel I have little to say that I have not voiced before and I am not one for repetition. My previous work has seen me as a qualified Project/Change Manager and the reason for mentioning that is that there are certain things I call on from that training these days that I probably haven’t needed to consciously pull into my practice in the couple of months ‘pre-Covid’. The good old Kubler-Ross Change Curve model is something I’m currently finding helpful to both assess where I am at and where I think others are too – it’s one thing I need to remind myself about is that we are all in different places throughout this and as we all experience things at different paces.
The point however is that I am at the stage where I’m past “Acceptance” and definitely I am ready to be “Problem Solving” as are a lot of the team – but some are before the dotted line I can tell and that’s a difficult place to be. Looking back to four weeks ago I am clear I was constantly moving back and forth between the first five stages so I am grateful to have made progress and now I want to be able to support others to make the shift forward too. I just need the government guidance to enable us to detail out the problem solving aspect and then we can come back from this. We can set out what it’s going to look like and give everyone something to “hang on to”.
The uncertainty about when we might return to some kind of normality is a real struggle for everyone and we all currently find ourselves in positions which are not as we would wish them to be, from either a homelife or work perspective. As a team we keep talking to each other and I truly believe that there are good things to come for our charity as a result of some of the learning that is happening during this time. I believe that the breadth of our service offer utilising “Virtual” technology will certainly have a place going forwards which, until recently, I had always somewhat dismissed given our customer demographic. The Virtual Wayfinder week last week really demonstrated that there are some fantastic outcomes to be achieved in bringing people together in this way and it was lovely to see some of the photographs of our customers and carers.
We are also learning a lot from the befriending scheme and the level of emotional support provision on the telephone too which I think we can learn from and I know that Jacquie had her first family zoom meeting recently talking to a family spread out across the land!
The new activity packs which arrived with us at two weeks ago are now all allocated and delivered bar 100 – that makes 1300 packs delivered to older vulnerable and isolated people in less than two weeks which is pretty spectacular – lots of people have been involved in delivering them and we are lucky to have the supporters we do.
I have had one committee and board zoom meeting after another in the last few weeks and the trustees really are committed to the work going on and how we are currently supporting our customers and also they are excited and keen for us to ensure our learning during this time is taken forward into our work of the future.
My next plan is to take a little time out – just a couple of days – to re-energise and prepare for the next steps in this journey – despite feeling somewhat flat at the moment, I am very clear that there are good things to come and I want to be ready for it!
A CEO who is looking forward
Reflecting on the Week………
It’s Saturday as I write this, so the 7th May has been and gone, which was my personal ‘predicted’ lockdown easing date – I tried not to get my hopes up but of course I did, as anyone does when they wish for good news and craves better times. We are all waiting for the Boris speech tomorrow where we hope for positive news however my suspicions and mindset today tell me that any relaxation will likely only involve a small amount of extra time for exercising and some garden centres re-opening – I may be being cynical though! The problem is I really want more, (although I do need to sort my garden in fairness and a trip to a garden centre would be welcome). My biggest issue remains that I want to plan so badly for the charity and what I suspect will be that I still will have no clue as to what the future direction might look like. I also want the general feeling amongst people to start to lift as despite trying hard to personally be buoyant it is becoming increasingly challenging……spending the Sage House birthday alone yesterday was pretty miserable – some peaks but largely troughs of personal frustration and some resentment too – stupid and unhelpful feelings to have I know, but feelings nonetheless which cannot be helped.
It’s been the week leading up to Sage House’s 2nd birthday on Friday 8th May and one can’t help but compare to our first birthday and the day we were opened by the Countess of Wessex. The first birthday was the first week of five celebration weeks in 2019 and huge amounts of planning and team effort, as we launched from birthday week to Dementia Action Week, to Wayfinder week into Carers Week and then Volunteers Week. When we came back to work after the Christmas break (5 months ago now – how mad!!) the SMT all sat down and we planned and plotted out this year’s month of celebrations to kick off from our birthday. Like everything else this has gone – evaporated and lost. We’ve done our best to make the birthday special, with a video compiled, some entertainment etc on our social media but its nothing compared to the special street party (as it coincided with VE day) that we had planned for our customers in our car park – the cake – the town crier – the dancing – it was going to be something truly special and we were all excited as we had started the discussion about how it could work in practice. [Photo is my favourite from the day we opened – my grandad wearing his Wales cap telling the Countess about how he had toothache]
Luke asked me to do my film for the birthday and when I sent it to him I was asked to do a re-take! Apparently, I was somewhat miserable (having reviewed it I really was!!!). Reminiscing and reflection however do catch me off guard at the moment and it affects my mood to the point I cannot or certainly don’t hide it. For the film we were asked to say what we love about Sage House. What I love is the people. Yes the building’s wonderful, it’s purpose built and we made it colourful and bright, we’ve made it clean and modern but we’ve made it friendly too – it’s actually however the people in Sage which bring it to life – the customers – the staff – the volunteers. Each bring something special to what we have. It’s a warm environment and people enjoy coming to us knowing they will be greeted with a smile – Sage in itself is a big warm smile essentially.
I have an office where I can sit and watch the customers coming in and out all day long [I do work too just as a point of clarity!] but I see the carers who leave the building at drop off, absolutely exhausted and then return at the end of the day more relaxed having spent some valuable time doing what they need to – often nothing nice – as carers don’t have time to do nice things – but they do get to spend time catching up on housework or sleep or shopping, all necessary parts of daily life the rest of us often take for granted. The customers leave with them having spent time having fun, being stimulated and doing things they enjoy – most of all happy. This is the main source of my upset these days and what is making me miserable – this is what keeps catching me off guard, when I glance out of my window to nothing but an empty car park.
The importance of which day it is now lessening. In fact, it is difficult to tell which day it is most of the time anyway – I’m not alone in that though I know. As such I have decided to put together my blog in a slightly different format now as reflections of the week rather than put them in as daily snippets from my journal – although that’s where the content comes from, as my brain also cannot compute or remember from one day to the next either what has happened.
Work is starting to normalise with some days feeling and seeming similar to others that have occurred during the pandemic. Some of the tasks I am doing are also feeling like the “pre-covid” work of old normal, and somewhat administrative, which I have to say is taking some getting used to – I am thriving in a world where I am making a difference and being selfish I don’t want to lose that feeling.
I managed a couple of nights of really good sleep this week and what an absolute difference that makes to concentration levels and feeling brighter. In honesty I had been a little concerned about how my ability to concentrate and my forgetfulness/clumsiness was so bad recently – a good example is the number of emails in my drafts box which I have got halfway through writing, clearly been distracted and then not sent them, but thinking I had….. The sleep however makes me instantly sharper and reassures that this will pass and I do not need to expend any energy worrying about my concentration.
On Monday I had to get up very early as the only slot I could get for shopping was at 7:00 o’clock this morning. I had spent a long time deliberating as to whether it was ok to have my shopping delivered or not! I felt very guilty and agonised for a while but conceded that it is one of the worse slots ever and I cannot imagine any of my customers making use of it! I also made sure it was a shop to last me for a month so I wont need another one. In any case I regretted it as I had little sleep the night before only dropping off at 3.45am when I had to get up at 6.00am to be ready!
Monday, I also signed off a press release with regard to the birthday appeal which was, as is the norm, sent out to various places. Global Radio then came back to us very quickly asking for an interview with me on Tuesday – thought that this was really good until I was told they have 51,000 listeners!! The interview went well though although very quick to record and I can only hope that I got all of the points across about how challenging our birthday is this year by comparison, our new Day by Day Appeal and also the fact that it is Wayfinder Week next week.
All of the Activity and Wellbeing Packs are in the midst of going out this week – our customers have all had theirs delivered to them and it makes me feel better to know that they will have them for the bank holiday weekend. Daft really as I appreciate for a lot of people the bank holiday makes little or no difference to everyday life currently, although I know that the fact that it is VE day will be something special and well regarded by many of the customers. In any case I feel better to know that they will have something to somewhat keep them entertained and hopefully they arrive at the right time for them.
We have had some lovely feedback about the new packs – some even from the Cornwall area which appears to have been a popular place where they’ve heard of us! One lady emailed to say thank you and on behalf of her mum and dad. Her dad has really enjoyed it and as his main hobby is colouring, enjoying the different prints and having the puzzle pages has kept him interested and whereas he’s never liked word searches surprisingly he’s having a go at them in the pack! Apparently her mother has found the easy read coronavirus information has really helped her to explain to her husband what is going on and the pictures in the pack have been really helping her to communicate with her husband – apparently the pack, a very simple and small thing we have produced, is a lifeline. We just need to get all 1400 out now – quite incredible to reflect how this has grown!
A weekly newsletter has gone out this week to all of our customers and supporters updating people of what we have been up to.
Thursday 7th was Dress up For Dementia Day this week – the theme was Superheroes. Oakwood School got onboard including the teachers and it was great fun and raised some money too for the charity. It was lovely to have photographs of the pupils coming in by email throughout the day and to see how seriously the children took it, making up superheroes of their own – Cricket Boy was a particular favourite! Of course, it was a very hot day and Dianne came as Cat Woman in a PVC black jumpsuit – think its fair to say she was slightly warm for most of the day hahaha.
We had a team meeting today where a lot of the team also got dressed up which was good fun – Anna even mentioned that it was nice to have something to think about and do for a while to distract her! It really made me laugh though when our chairman dropped in dressed as Superman – what a sport and by coincidence I was Supergirl!
My daughter also brought little Phoebe over dressed as Batgirl which was so sweet as she stood in front of the Sage House sign and held out her £5 that she was donating for photographs. Great to see them but sad too as Phoebe said she is coming to stay with me for two sleeps when the virus has gone as she misses me. She knows not to hug or get close at the moment and I find this really hard to get my head around. I cannot fathom if this is something that will have a long-term impact on our younger folk. Will these learned behaviours already engrained into their everyday life at such a young age impact them and their ability to display affection in the future? How can we influence this to make sure that this does not become a trait that gets passed onto future generations but remains merely a blip in our current world?
I did forget that I had an important meeting with the CCG on Thursday until I sat down at my desk in the morning – again a little symptomatic of the current position as I would normally know a week ahead and plan my diary out. Meeting people for the first time dressed as Supergirl and hoping to come across as both professional and knowledgeable was a little challenging but I think I contributed!
An update on Mr P. It’s fair to say there’s been a lot of activity going on this week, which culminated in us being very concerned for his safety on Friday particularly, and us needing to contact and raise an incident with the police. His dementia makes him so vulnerable to those with ill intentions as he just wants to be friendly and talk to anyone who might listen or potentially help him. Luckily on this occasion he spoke to someone with good intentions who offered him a lift somewhere and luckily he is safe – although it calls into question all sorts of queries around attitudes to social distancing on the other persons part at the moment in my opinion. His call levels are quite extreme now and he can ring up to 20 times a day – none of us mind and the fact that he tells us he misses us and loves us makes any time we spend talking to him absolutely worth it. The wayfinding team are going to try and set up a virtual meeting with him so he can see some of the team as we know that will make his day as he spends a lot of time looking at our photos on various leaflets and reports he has at home from the charity.
Good news to report in that the bank account for the ex. Offender is now set up thanks to the wayfinding team – apparently this is the first bank account that he has ever had and means now that he can get the benefits to which he is entitled and to which he has never received previously.
The shopping calls have now properly taken off and we have a good number of customers. Keeping on top of this is proving very time consuming but Isla is managing it well and Sylvie has now managed to recruit some extra volunteers who are happy to help which will be useful as the geographic area we cover really is quite extensive.
So, the Friday is bank holiday, for VE day, and also our birthday which I mentioned earlier. I’m sorry but I can’t help but feel cheated by Covid-19 – it has stolen our anniversary and plans which is unforgiveable. However, what I resolve is this. We will celebrate when this is over with our customers. We will also celebrate every birthday to come and we will look back at this time and remember the part we played in keeping our customers safe in the best way that we could.
As I look back over this particular blog I accept it is all a pretty miserable read and I am sorry for that – there have been some laughs and high points this week, as well as numerous examples of where we have made such a difference to people. For instance when I collected a prescription and delivered it – it took 5 minutes as all very local, but I then spent half an hour chatting to the lovely elderly recipient who was clearly quite lonely (whilst social distancing of course) – that was a lovely time where I felt good. We have delivered lots of shopping to some hugely grateful and desperate individuals too and spoken to so many on the telephone offering support during this time, so I know we are doing good work – but I want more now – I am ready to move on from this please……
Until next week…….when the theme for Dress up for Dementia on the 15th is Disney! And hopefully we know a little more……….
A resolute CEO today
Reflecting on the Week………
How is it May already? What when we look back can we ever take from April 2020 that’s positive or worthy of remembering?
I’ve had a few conversations with people this week along these lines and actually my personal response is this; Firstly, I will remember what an amazing group of people I was working with in April 2020. They were agile, giving and above all the charity’s superheroes in thinking creatively to benefit our customers, putting in place new services very quickly, all in an effort to do as much as they could to support vulnerable people in our community. I will remember our volunteers and trustees who pulled together and continued their support to the charity as well as one another. I will remember our customers and carers and admire how they dealt with one of the most heinous times in our lives, about how they adapted and them being some of the most remarkable, stoic and brave people who coped with so very much to keep their loved ones safe.
I will also remember the personal feeling of loneliness and the sadness that it brought to me and also the lack of touch and closeness to others, but I will turn this into my ongoing driver to tackle the same issue for our customers – it’s always been a fundamental part of what we do at the charity anyway and has always been my passion spanning my career pretty much but now I have had a “taste” of it I will not rest.
So, here is my week – remember you get the bad as well as the good from my journal……
Saturday 25th April
Had the phones – spoke to a few very nice people including the lovely Mr. P of course. He’s worried today as he’s gone for a walk into the town centre and is concerned that everything is closed and that there are no people. He’s also concerned that the few people he has seen have things covering their faces which I can only assume are masks. This is now becoming more normal practice for some following a few MP’s stating that they might implement them as part of an exit strategy. I don’t know how to explain this to Mr. P if I am honest – he already believes that the virus is actually just people going around killing each other – the masks brings another level of complexity for him. I use distraction, shifting the conversation to things we know he likes to chat about. I want him to go home and to be safe but I don’t want to scare him either so I remind him that one of his ladies (carers) is coming soon which makes him set off – he rings me a couple more times on the way and we talk about the birds and the weather.
Also had quite a lot of back and forth with some of the team and a trustee regarding our new D4D (Dress 4 Dementia) fundraisers that are taking place each Friday and how in the week of our birthday we might be able to engage some of the schools to get involved. It’s 1960’s theme this coming week and then we’ve decided to do superheroes in the week following which we hope will engage the children (and adults of course). Note to self; choose future themes around clothes in actual wardrobe….Covid-19 is costing me a fortune in clothes I will unlikely wear again.
Along with the having the phones today and as is the new norm, I spent most of the day writing my blog! I’d been pondering within it how my grandparents would have reacted in these days so it prompted me to get some of my old photos out (actual real photos not on the phone!) – there really is nothing quite like it for remembering happier and better times and the tangibility of holding a photograph just adds to the contentment they bring. As I write my journal I reflect that I feel content and calm – the journal and blog helps me to decant and download any angst I am carrying and then the photos have sealed that with happy memories.
In all a lovely day and managed to grab an hour chilling in the garden too. I feel good.
Sunday 25th April
My work day only consisted of continuing yesterdays chat over Whatsapp about D4D and our birthday and what that might look like from a social media and communications perspective. We are very lucky as we have managed to snag some volunteers who are going to help us with all of this.
With the government paying for companies to furlough staff, Covid-19 is allowing people with amazing skill sets to be available, if they choose, to volunteer. It’s up to the individuals to decide who they offer their skills to, and some may choose to stay at home and redecorate, clear the garage and do all the things they have never had time to do before but some are going out and saying “what can I do”. Some are volunteering to do the day to day stuff that needs doing… the shopping for vulnerable, the “shielded” who cannot go out themselves and then, some are choosing to offer their talents to charities – charities who would never have the capacity or funds to pay their market rate.
With the cancellation of group gatherings and a lack of knowledge about what the future looks like I do feel sad in the knowledge that many events at Goodwood, which personally I love going to over the next few weeks and likely months will, for sure, be cancelled. HOWEVER on the upside, some of the fantastic marketing and digital experts from Goodwood have offered to help us look at our website and our marketing strategies including the exit plan marketing wise to all of this. Of course, I already have a great in house staff on board for this, but to have additional expertise and high level talent such as this for free is such a gift right now and a huge silver lining to what is an incredibly difficult time. This re-distribution of talent is an unexpected and welcome ray of sunshine in what is feeling more challenging day by day. This gives me hope. I am so grateful to a couple of our trustees who have opened this doorway to us and have put the suggestion to some of their staff that we could benefit from their expertise.
Various fundraisers for the 26 26 campaign went on today which were all highlighted on our facebook page – they ranged from a Name that Tune quiz (26 songs) performed by a couple of our young volunteers at Sage House, Tracey’s Dad doing 26 laps of his block where he lives, a dog doing something with 26 balls, people running for 26 minutes, a 9 year old putting together a 26 second Stop animation and our Suzanne (Move to Music) doing 26 dance moves with 26 people – we think from that our community supporters have raised about £1,500 which is amazing!
Apart from the Whatsapp exchanges, I had a brilliantly funny group facetime with my sis and daughter (sorry but those filters you can put on just had us crying with laughter – which I really needed). In bed at 11pm!
Monday 26th & Tuesday 27th April
Awake at 3am on the Monday! Knew the early night would catch me out. The reason the days are together is quite honestly because they merged – I’m finding that a lot these days especially so at the beginning of the week when it is challenging to motivate yourself and not let that be felt or seen by others. I think I am also getting worse with regard to hiding it in these last two days anyway. I think that others are struggling as well and I notice hints of what I feel is despondency and negativity in some calls and emails, perhaps however I am being paranoid or just reflecting how I am feeling into my perception of others.
I feel irritable in truth and the lack of control over anything is a real challenge to me. I want to plan and other people want and need me to plan too. They are looking to me and saying what does this all look like in a month, 3 months, 6 months, a year and then further still and I can’t answer. I feel under pressure, but I reason that how can I plan what any of our face to face services might look like? I don’t know Government plans regarding the lockdown period and they have not even sniffed at releasing an exit strategy yet – I need answers. I need to know when my customers are going to be locked down until, what the rules around social distancing will look like, the impact face masks are having in general with the spread of the virus, will testing be available to us? will groups/networks be limited to a specific number? Without any of this I cannot plan – I don’t know when anything will happen or what will happen. I need to get a sense of when this will pass.
First meeting was with the wider management team where we talked accounts, money, the new fundraising appeal we are launching this week, plus where everyone is at currently – was pleased that Reece is keeping himself together as his housemate permed his hair last night – it seems the Thomson Twins live on (young people might need to google that reference).
We had our first of the week coffee and catch up with the team today too. I think only 12 people dialled in and it felt like everyone was a bit flat. The problem is that when you ask so what have you been up to of course it is so limited these days. I did notice this happened last week in the Tuesday meeting – need to keep a watching brief – maybe try a new tact of making it more fun and interactive…..
I was invited to join a taster session Tuesday afternoon for “ONLE Boardroom’s Charity Leaders Board” and I found it really helpful. I love my job – I do and I’ve always said it. I am lucky enough that I work with a customer group that I’ve always had an absolute affection for and which drives my passion to get out of bed in the morning. My skillset and abilities are a really good match for the work I do – there’s not a bit that I dislike (well maybe VAT…however you get the picture!). The only issue with the role is that it can be quite lonely – I think most CEO’s will tell you the same. I have a great SMT and Board of Trustees with whom I share, of course, and I am very transparent generally speaking. There are however always things, normal concerns, that I am unable or do not wish to divulge and the ONLE Boardroom provided that opportunity to offload. We shared challenges and better still we got thoughts, challenges and downloads from others. Clearly I cannot divulge the content of the discussion (first rule of the meeting!) but suffice to say that I feel better. I feel better for sharing, for airing my challenges and hearing that firstly these are replicated across the voluntary sector right now and then to hear how others are approaching those things was great. It was a breath of fresh air and the feeling of also being able to contribute to others challenges from my own experience, that reciprocity, brought significant added value.
The shopping and prescription service has really taken off – it is quite a time-consuming service to offer but Isla is managing it brilliantly. People can be quite particular about what they would like, even in these circumstances! I am always a fan of “not asking others to do things I haven’t” so I went and did a shop on Tuesday afternoon. Firstly I think I probably have got caught speeding on my way to the shop – I’m such an idiot. The police certainly had a camera – I have no excuse if I was, just in my own world listening to my loud music.
Doing the shopping itself was an interesting experience – I found myself staring at a packet of 4 leeks with a list that specifically asked for 2 small ones as apparently, she’s a little lady who lives alone. The decisions I make on a day to day basis yet I struggled with this, along with what size block cheese to buy, was the cheese to go with leeks as I’d bought double the leeks than those requested – also no blueberries! Seriously I was in a real dither! I think it’s the responsibility for spending others money and the innate feeling of wanting to please and make someone happy at this time. Dropped the shopping up to my chair of trustees who then delivered on up to Petworth….I feel like I’ve actively contributed today – I need to keep doing things like this as it helps. Makes me hold true to the fact that this will pass and I have helped.
Nat’s been contacting all of the local schools to try and get them involved on 7th May in Superhero D4D. I’ve emailed the information to Oakwood as we are their charity of the year and one of our trustees has managed to convince them to get involved – Luke has completed the artwork for it.
Home late on Tuesday and a proper mix bag of emotions today – highs and lows….I got flowers today – they made me very happy.
Wednesday 29th April
I decided to work from home today – I am really wanting some head space to see if I can plan anything – it’s an anxiety I am not able to shake at the moment which is being perpetuated by lots of questions I am unable to answer from different directions.
Of course, as murphy’s law dictates, and as you might expect as we aren’t in the office today, we get an urgent call. That’s why we are normally there as its easier to coordinate things especially communications. There is a need for cleaning products, bedding, duvets, washing products, towels and flannels and a Hoover for a lady who’s being discharged home from a residential placement and she desperately needs those items to do so, as she has difficulties with continence. We manage to get everything sorted and luckily it will be together before she returns home in readiness. Hard to believe that without such small things she would have to remain in residential care for longer.
Charlotte, from Wave105 radio got in contact – she is great fun to talk to. I recorded an interview with her which will go out on Friday morning as our new Day By Day Appeal launches and I talk about the difficulties people have in the current times which I can hear in her voice she is quite shocked by. That’s the point really is that its just not situations that you would think about unless you are in it.
We’re getting a lot of contact via social media now from individuals who we are then linking into our wayfinding service. This means we are reaching further afield than just the Chichester area, but these are people who need help at the moment, and we are in a position to provide just that, so the team of course do not turn anyone away. One such contact today was from someone whose mum has Alzheimer’s and is obviously at home in isolation with their father, whilst their daughter lives the other side of the country. The daughter was desperate for ideas about how to keep mum occupied and was distraught as she can only see her through FaceTime and she knows that her dad’s finding it really hard to cope. She is watching her dad literally fall apart online, getting further and further into depression and just doesn’t know what to do. The team pick her up immediately and get her onto a path of releasing the burden.
I mentioned in my blog two weeks ago about the advanced directive that one of our customers had been sent by their GP and the fact that we have raised the issues with the local CCG. They have issued their response to us in which they say that “it’s very important that individuals are able to have conversations about their wishes and preferences for their future and treatment”. This does feel a little like a stock response….It states that this is a nationally recommended process which involves a person having a discussion with their doctor and family around what care they want – I completely understand that so far and agree advanced planning is very important. The statement goes on to say it’s particularly important that the conversations continue during the Covid-19 emergency particularly with those people who are at greater risk of developing severe illness from the virus…..okay I kind of get that – rubbish bad timing though and gives a scary message to people but I appreciate these are scary times. Then it goes into the crux of the matter in my opinion…. it says these discussions should be done in a sensitive and compassionate way that is tailored to the individual person taking into account their personal circumstances and their medical history. There you have it – the fact that the GP sent a letter to someone in lockdown who has dementia is neither sensitive nor compassionate. I am angry all over again, in fact the anger hasn’t dissipated from when the letter dropped onto my desk.
The letter goes on to say, normally they would have expected these discussions to be held face to face but in the current situation it is deemed in the interest of protecting both the individual and the medical staff involved that these can be held by video link or telephone. It says; “We have made it clear to GPs across Sussex the importance of ensuring these discussions are carried out in the correct way and in line with the Mental Capacity Act 2005”.
We chat as a team about the response and the current process. Thinking back pre-covid [nb. seems everything now will be determined in this way i.e. pre and post covid] it seems we have generally seen more of a push for DNAR’s since the new year and the fact is that when it comes to most older people, as a team we believe that a GP is not the right person to have the conversation as we consider that it makes for an uncomfortable and untenable position for the patient. People in the older generation were largely brought up to respect the word of the doctor and accordingly they will often follow to the letter what they are advised by their GP. This proposal being delivered by the GP just doesn’t work on any level. We resolve together that we believe we can play a part in these discussions and I have a meeting tomorrow with Carers Support West Sussex as well as Public Health to discuss the “dying well” agenda where I will discuss how this might work as part of the pathway.
At least our Wayfinders have done fantastic job in supporting these customers and had everything relating to the issue removed entirely from the customers patient record so they feel reassured that nothing has been agreed to.
We’re starting to get referrals now from Adult Services for befriending. One case of a gentlemen – Mr A – who’s particularly lonely after his wife has gone into residential care. He keeps calling emergency services which of course is far from ideal at anytime, but especially so now but it’s just because he wants someone to talk to – he fully admits he’s very low and misses people. Statutory teams were starting to have conversations about him going into residential care so he would not have access to a telephone and to stop the calls…..of course that’s ridiculous but sadly true. We set him up with a male volunteer who will ring him daily first to help bring some structure to his day and fill his time and to just sit and chat to put the world to rights.
Shopping requests are coming thick and fast now – I am a little worried as I am hearing that people are leaving it to the last minute – one caller today said he wouldn’t be able to eat tomorrow as he will have run out of food – luckily one of our trustees is on hand to get that sorted along with shopping for three other people bless her – I’m not sure it’s what she signed up to when taking on the role.
One of the team has been to see Mr P – socially distanced of course, to check on him as she was very worried following a conversation she had with him last night. He was in a pickle and saying he had a problem with his face and that it was sore. She went over to just check in and apparently he looks really well! He’s got a brilliant sun tan apparently and was so pleased to see her..
We’ve just heard that one of our lovely day breaks customers passed away – not from Covid thankfully and her family were with her. Such a lovely lady who had been with Sage House for a long time – bother her and her husband regular faces for us all and she will be missed. RIP D x
I managed to catch up with each of SMT individually today which made me happy – I’m used to them popping in and out of my office during the day which I like and I miss a lot.
It gets to 6pm and I’ve not done anything that I set out to do. It’s just been too busy, so I end up quite upset and emotional. I need some plans, some direction – I want to run scenarios – I feel I have no control over the future and all I can talk about is what we are doing now but others expect me to have answers about the future. I think I’m communicating what we’re doing to those who need to know about it, but I am so caught up within it maybe I am not, and they don’t have a sense of the breadth of our current situation. I’m really worried about services committee on Friday. Each of the committees focus on where we are heading and look to me to steer that – I don’t feel able to talk about scenarios that may or may not come to fruition – it is fruitless and time and brain consuming which I have little space for. There are so many variables to how this might play out that I can’t possibly capture them all but they run continuously through my mind. This is not a nice feeling – I do strategy and strategic planning, it’s my forte but I’m at a loss. I chat with some trustees and get some real reassurance – It doesn’t alter the fact that I feel like I am letting the charity down as I can’t do my job, can’t do what they pay me to do.
Thursday 30th April
The day starts well when I talk to Jacquie about Simon who has been in Pinewood Nursing Home since the beginning of lockdown. His wife Susan has been writing letters to Simon 3-4 times a week as of course she is not allowed to visit. This is hard as Simon is there because day breaks had to close. Susan knows however that the carers read her letters to Simon every single day. There has been one case of Covid 19 in the care home, which of course was extremely scary and it means all the residents are confined to their own rooms. Yesterday one of the carers noticed that Simon’s shirt looked really bulky and she asked Simon if he was comfortable and would he mind if she checked him over. He showed her – it was all of Susan’s letters tucked in under his shirt. The carers rang Susan to say just to let you know Simon is keeping your letters close to his heart – I welled up when I heard this. Our wayfinding team call Susan regularly and she is so grateful as our calls apparently often come when she’s had her darkest moments – she wants to know if we are trained in telepathy! 😊
The day gets better still when we have a visitor to Sage House – I cuddled a mini sausage dog puppy for an hour. He was brought into the office while his mum had a distanced meeting with Luke. He was only 8 weeks old and it’s the best I’ve felt for ages – they really are therapy. I cried a little as it’s the closest I have been to something breathing for the last six weeks and actually to feel the warmth was really quite extraordinary. Also, it was a mini sausage dog and my family will tell you that I have wanted one for so long, but cannot sadly give it the time it would need – when I stop working, definitely though.
I had a couple of meetings today, the first one was with another organisation who works with carers locally and with colleagues and partners from the statutory sector in the Public Health Department and Adult Services commissioning. It was an interesting meeting where we talked around the issue relating to the DNAR and advanced directives as well as how we support carers who have suffered a bereavement during Covid-19, particularly those that might have been in residential homes when they passed and how we can support the individuals through that. There is a lot of interest around supporting the DNAR planning process particularly and statutory partners are going away to discuss how we can support and to hopefully engage those from the CCG who can help roll this out. At least it feels we might be able to turn what was one of the lowest points during the last few weeks into some positive action for the future….this feels better….planning, positivity, helping and contributing….its what I need.
I went on to have a great meeting with an ex colleague and he is CEO for an organisation in the South West area, working with people with physical disabilities in a day care environment too. He’s clearly having similar issues to us having closed all his face to face services. It was actually a really helpful discussion personally because I managed to talk through some of my concerns and worries around the “inability to plan subject”. To share with someone in the same position is really important as it reinforces.
Our appeal launches tomorrow which I am excited about as I have had sight now of the initial content which will go out to our supporters – amazing job fundraising team! It’s the powerful story of one of our lovely day breaks customers, Sheila and her wonderful carer husband Brian and how they have been impacted by not being able to attend Sage House. There’s one part in Brian’s words that really stick with me and makes my heart go out to them;
“Sheila has real highs and lows. Sometimes we can dance and sing together, other times she forgets how to eat and drink, and shouts out in frustration. We both miss Sage House. I find it difficult to engage Sheila in any activities. Meanwhile I am very lonely”
It just says it all.
We are just trying to plan some communications relating to our birthday which is on the 8th May – of course this is the day after I have my hopes up that lockdown will be relaxed somewhat, despite telling myself I shouldn’t but the statement from Government this evening suggests that there is some light at the end of the tunnel potentially. One can only hope that this doesn’t mean people will start being daft and no longer adhering to the lockdown and distancing requirements. We have had such low numbers in our area and can only hope that its not going to be ruined by a second wave as people start to take risks and ignore Public Health messages….it is really starting to feel however like this will pass
Friday 1st May
Today’s Dress up for Dementia theme is the 1960’s and my blond Marilyn wig hasn’t arrived so I am trying to rock a brunette version rather unsuccessfully. As I enter into zoom meetings throughout the day though most people have got dressed up and that starts with the Services Committee at the start of the day – I love that my trustees make the effort to engage in these silly things – I secretly believe they enjoy it – but it does mean that the meeting is more relaxed than it might have otherwise been as we all laugh at the hippy in Martin that we all knew was there all the time and dying to be released.
I didn’t need to worry about the Services Committee meeting – my concerns around being unable to plan were completely understood although I believe somewhat helped by Boris Johnston’s announcement last night promising more news about an exit strategy on the 7th May. I suspect this has given some people a timeline to have in their mind but I still need to manage expectations as one thing I am sure about is we are not going to have a full strategy from government next week, but some guidelines will be very well received. We vow to regroup 12th May to discuss the output from the 7th in the hope we might be able to start putting some meat on the bones around future direction. In the meanwhile we bring everyone up to speed with what is happening. The caseloads the team are carrying, especially given the complexity of these is immense with regular wayfinding and activities customers at 93 customers (15 new since lockdown) and we are also supporting 25 daybreaks customers and their carers. My team are amazing.
The second version of our Activity and Wellbeing Pack arrived today so that sorts next weeks work pretty much for a lot of people in getting them distributing and delivering. Dianne has been busy getting the domiciliary care agencies all onboard and they really are keen to have something they can give out to their customers to relieve the boredom and provide a little respite for the lonely reality that some are confined to at the moment.
I have a few other meetings including our SMT and then we have a Coffee and Catch up with the wider team – again all dressed up! We all caught up with each other and then we virtually, via zoom and courtesy of her daughter Amy (our new activities coordinator when we can back to normal) joined the amazing Dawn Gracie who is “Facebook living” from our Facebook page every week to entertain our customers and had picked the 1960’s theme in last weeks show. What’s great is knowing that our customers are joining in and watching at home – we even have nursing homes joining us now from their lounges each week too – so lovely!
Luke was pulled over by the police on his way home. They were stopping people as they had noticed increased activity on the roads. He showed his letter to the police, but I think the 1960’s attire he was wearing didn’t help his situation any.
I feel there is definitely a return to Friday feeling starting to re-emerge in the last two weeks. I wonder perhaps if people are learning to work from home and to delineate between the, this is me at work during this time of the day and then switching it off and away come the end of their “shift”? Thus, making a weekend and downtime more of a thing than the three weeks previous.
My reflections from today are that there are a couple of my team members who I think look more relaxed and rested at the moment, in fact more than I’ve seen them in a long time and I wonder what I can possibly do to ensure that continues into the future – there must be some lessons in all of this. Others however are certainly more frazzled, troubled or low – I count myself to an extent in that this week and feel no shame by admitting it. I could of course have it wrong though as I feel completely removed from my teams worlds by not seeing them directly and I crave it. We currently share no reality with each other and for me it something that I find troublesome. I fear it lies as a key challenge as we look forward. Will everything just snap back and be as natural as it was before? I hope so and I trust my team and the culture and behaviours we have as an organisation to see us through. Our charity is built on the solid foundation of “team” and “people” – it’s about what we do and how we treat and make others feel. Our customers drive our ambition to do more for other people living with dementia and we all just need to hang onto that so we can get back to it when this is over for this will pass.
We will be stronger, closer even perhaps because of the separation. We will be more resilient and appreciate that we are stronger together and that we are brave and tough. We will recognise that despite everything going on, we sorted ‘stuff’ quickly. We were agile, responsive, brave and ready. We took Covid on the chin and we did everything in our power to support our lovely customers, carers, volunteers and colleagues through this. We will know at the end of this that we did our bit and played our parts for the charity, whatever they were.
Until next week…….
A tenacious CEO today
Reflecting on the Week………
I’m in a good mood in fact I’m like a proud parent to a relatively new born this morning, wandering around my house with a grin because…..I slept all of the way through the night!! Go me!! It was only for five hours but it was unbroken sleep!
It’s Saturday morning as I go through my journal to pull this together and it’s a little grey outside, but also very early still, so I am hopeful we will be graced with Phoebe Brightside (as my lovely little nanny used to call the sun – she was only 4ft 10’ hence me and my sister always calling her little nanny 😊). They both had dementia – my nan the Lewy Body form following her onset of Parkinson’s and my grandfather had Alzheimer’s and Vascular dementia, hence my affection and love for what I do.
I do wonder what little nanny and my much adored grandad would have made of today’s world – grandad would definitely have had lots to say about the madness (his motto: “say it as it is – please or offend”). One thing I am sure of is that there is no way on earth grandad would however have isolated, stayed in or social distanced either before his dementia or following. Grandad was a lorry driver and such a sociable man – my little nanny ways always moaning that it took him 3 hours to mow the smallest patch of grass in front of their flat because he was constantly down tools-ing to stop to talk to people as they walked past.
I am reminded a lot of my grandad by Mr. P who continues to go out all of the time. We’ve been working with his social worker to put in place strategies to minimise the risks he is exposed to as he really likes to go for long trips out and on the bus. We are hoping that an extra care call that has been put in for him of a lunchtime might curb his going out a little as he likes to be there when “his ladies” pop in to see him. We have therefore taken to ringing him to remind him that they are coming so that he at least stays local.
This last week started quite low – I could feel somewhat despondency in the zoom team coffee catch up we had on Tuesday – it’s really very hard at the moment to motivate yourself to start a week when you have no way of knowing what it will entail, how it will end but knowing that there is so much outside of your sphere of control. I however continue to remind myself that staying positive doesn’t necessarily mean you have to be happy all of the time – it means when you are feeling low you know that this will pass and better days are on the other side.
So here’s my week – becoming more mundane I fear as time goes on……
Saturday 18th April
Spent a lot of the day writing my blog and manning the phones – just a few calls from the ever so lovely Mr. P but he’s not in a great place today. He’s very anxious and he can’t comprehend what a virus is – he tells me he knows he shouldn’t go out and see people and he’s absolutely convinced that it is the people that are bad and are ‘after him’ not that there is a virus. He says he mustn’t answer the door as they will come and try to get him. I can’t move him away from the discussion and I try distracting with conversation around his dinner and his old job but his brain and anxiety levels draw him back around to people being dangerous. I feel useless – he’s a tactile individual (like me) and he loves people normally so I worry about how his brain will process these new thoughts and how that might impact him and his view of mankind in the longer term…..please do not let it go down the road of aggression and paranoia but I fear it easily could.
Nothing else particularly remarkable today – a couple of glasses of Merlot to finish the day – I have tomorrow off afterall.
Sunday 19th April
Took the day off – did not send one email. Did however spend my day doing chores – my house is dusty and my garden overgrown unlike everyone else I talk to who says that their’s is looking better than ever as a result of more time at home! To a degree I am jealous but then reason that I get far more out of being at work and there is plenty of time when this is all over for me to iron my clothes and clean my windows!
Managed to spend a little time sat in the conservatory listening to Etta James. I think that the birds are definitely noisier these days and are coming closer to the glass than ever before? Perhaps it is that I am just noticing them more as I look for some good around me? Whatever it is I am committing to ensuring this becomes a regular thing – spotting the good, appreciating it and sharing it.
Monday 20th April
I woke up really early again this morning however I did manage a relatively decent night’s sleep (although did some online shopping at 4:00 AM!)
It was just Dianne and myself in the office today – I am missing people especially after the weekends of being on my own – I talk to people throughout, of course, but there is something about the physical presence of others that is very tangible these days. I am not sure that I had ever even thought about it in the past but it’s now one of the things I consider a lot and especially so for my team who live alone and of course my customers. It’s very clear now from our telephone call logs that the amount of time we are spending talking to people is increasing significantly as the weeks go on. What we are doing doesn’t feel enough, but I am at a loss to know what more we can currently do.
I had to furlough four further members of the team today which again doesn’t feel nice and not phone calls I enjoyed making (although it was lovely to have one to one catch ups with them). There are a procession of difficult decisions to take these days and a lot of rapid reasoning required which suits my mindset normally speaking, although it requires a level of concentration that can be difficult to maintain in these times with the pace of change. I just need to keep thinking about what is best for the charity including what is business and crucially PEOPLE/CUSTOMER critical at this time vs. the long term financial health of the charity.
The balance of our activity packs arrived today – however we’ve had so many requests over the weekend that it means that they are all now spoken for. This means that any further requests will need to wait until we produce activity pack two which we are just having discussions over the content about now.
I prepared the majority of the board papers for our Board of Trustees meeting on Friday this coming week – they are late as should have been with the board for a full week before, but I reason that the majority are self-isolating so will hopefully have a little more opportunity to prep, than their normal hectic schedules allow. Preparing for the board is not one of my favourite things to do at any time – it’s paperwork heavy and time consuming – although don’t get me wrong governance is hugely important for any charity!! Today however it’s really not “my thing”, in fact it’s made me miserable and grumpy. I have no energy for pulling together the documents. Compared to the operational side of what we are doing it seems inane and unimportant and it doesn’t feel like it’s a good use of my time or energy at this moment.
I delivered an activity pack on the way home which was lovely and I felt more joy at doing that and knowing that I was delivering to one of our daybreak’s customers something that would help them in their family over the next few weeks. It took me 2 minutes and gave me the joy and feeling of worth that I needed.
My blog was published online earlier today and someone has reached out to me. They state that they are grateful at this time to be an orphan because they are not having to watch any of their precious vulnerable family go through this. I can only agree with the sentiment but what a very sad state of affairs that we are grateful for our loss. Thought provoking, sad and just not normal……..hold onto the thought Sally that this will pass.
Tuesday 21st April
Loads and loads of meetings today – apart from the fact that I haven’t got out of my chair for most of it or seen anyone face to face and some of the content itself, then you wouldn’t necessarily know it was any different a day to the norm of 6 weeks ago…..was it really only 6 weeks ago things were normal? Certainly I was issuing staff guidance on the 10th March saying people should be extra vigilant regarding handwashing but I was still reinforcing our business was as usual…..6 weeks – this is madness
It started with our SMT meeting where we talked about launching our COVID fundraising appeal next week – basically our current best guess [today] is that the charity will suffer a potential loss of income of £140,000 – the issue we have is that this changes on an almost minute by minute basis. Outside of fundraising our largest income stream is from our Day Breaks services but I can’t begin to fathom what that might look like in the future. It will be driven by government guidance around social distancing and care directives. As for when?? again lockdown for our customers will dictate. I’m a planner – and this frustrating me and then the guilt……really it’s not that frustrating Sally is it? Big deal, you can’t work out some numbers……
Next I went straight into an HR committee meeting where a lot of people joined us from the Board of Trustees to discuss where we are up to in terms of staffing at the moment. This was followed by one of my favourite times of the week – our whole team coffee break meeting! We hold them twice a week at the moment to catch up with each other and to share how we are feeling and what we are up to.
It was lovely to see all the gang again! There were 22 of us who just all chatted away. What was nice is that we all prepared an inspirational quote so I’ve penned them down so that it captures the mindset of where we’re at and how they’re feeling and thinking.
Motivational Team Quotes;
- Be grateful for everything and everyone
- What if I fall? But my darling what if you fly
- You can’t do epic **** with basic people
- One of the happiest moments in life is when you find the courage to let go of the things you cannot change so think happy and be happy…..it’s good to talk!
- Live everyday like it’s your last and every night like it’s your first together
- Happiness is working with great people (but then she added I am happy and you are great thank you)
- Respirer l’instant (broadly translated as breathe in the moment)
- Success is not final, failure is not fatal, it is the courage to continue that counts
- Yesterday is history, tomorrow is a mystery, but, today is a gift that is why it’s called the present
It is moments like this that you appreciate what you have and those that you surround yourself with. How lucky am I to have such a resilient, brave and forward looking bunch hey?
This afternoon I was into a meeting with Linda our finance manager where we talked about closing the end of year accounts, coding and adjustments – essentially all of the normal stuff that you’d actually expect to be doing at this time of the year…all so very odd a feeling at this moment though.
Finally, in the afternoon we took a call from a social work team and who were desperately in need of a single mattress and some sheets and duvets etc. It’s for someone who is incontinent and being discharged from hospital and they only have one set of bedding and their mattress is badly soiled. Talk about fate! Dianne has a new bed being delivered this very evening for her son so will have a single mattress available from tomorrow! We also put out a shout on social media for bedding and I swear that literally within 5 minutes somebody have offered us what we were looking for and they were dropped to us within 10 minutes – I find the kindness and peoples propensity to give and help and to look after one another right now very humbling.
One of our trustees, Therese came into the office and packed up all of the 100 packs that arrived yesterday – they are all pretty much committed now but I am excited that in my email inbox I have received the first draft of the 2nd activity book! So much genuinely lovely feedback from the books – something so small has made such a difference to people.
Wednesday 22nd April
Slept okay ish. Another busy day! But again it feels a bit more normal apart from one thing…..we SAW PEOPLE!!
Tracey, our Catering Manager popped in this morning – she has been furloughed and wanted a bit more information. We had a good chat and it is really lovely to see her in person and to have different faces back in the office. In the office we were talking about the last week of day breaks before we closed and how special it had been as Tracey had cooked for everyone each day and we had all sat with the customers and eaten together – really desperately we all want those times again, we ache for them. In hindsight it is like we knew…..we took the opportunity to spend as much time with our lovely customers as we could and to share. Seems so long ago.
After Tracey left I was a bit perplexed to see her come back after two hours later……but she brought us food! She also brought me food to take home and eat because she knows I tend to ping food these days just because of time and effort! I couldn’t believe it – she went home and she made me a cottage pie and brought me in a salad and she bought in pastries for all of us in the office that she’d made that morning. So, of course I cried again, and she laughed and said that she knew I was going to do that – was nice to see her laugh. She’s also organising a fundraiser for our 26 on the 26 campaign – having her Dad (who is living with dementia) get active around his local area – she has set up a fundraising page now with Luke’s help and that’s definitely given her purpose and drive…..not only has she fed us, but she’s actively contributing to the charity and I can see her becoming invigorated by it. That’s how all the team are now, its why we do what we do….to make a positive difference.
Martha and Isla also both popped into the office. Isla was picking up files that she needed for accounts because sadly they don’t stop just because we are in lockdown and Martha was in to drop off some receipts too.
Another request from social care today – a bed required for someone being discharged home from a nursing home. The lady has Parkinson’s and her lack of mobility means she cannot get upstairs anymore and can only fit a single downstairs. Anyway all sorted within the hour and it will be collected and delivered to her house on Monday……at least she can go home and stay safe.
First befriending call today! One of our trustees is ringing Miss B now each week to chat for a while and to put the world to rights! She is 91 and just wants a call just once a week to have a general chat, she has been housebound for a couple of years, after an injury to her back….. I cannot imagine how she gets by on a day to day basis. The match seems to be a good one though!
And lastly a very special visitor……I saw Phoebe [granddaughter] today which was so very very lovely but I was instantly sad as she automatically social distanced. I found that awful and I started to worry – I’m her best friend (so she says, although I accept everyone is!) and I am her nanny who she spends a lot of time with and we cuddle a lot! but she did not even attempt to,,,,,,how has that happened so quickly? She’s only 3 ½ and I never want her to think this is normal…how quickly will she revert back? Will she revert back to the affectionate and tactile little one she was only a few weeks back? This is my worry tonight…..This will pass but what will it leave in its wake.
Thursday 23rd April
First journal note at 6am – I’ve woken up and given myself a good telling off – I need to snap out of this silly questioning of things I cannot answer and I need to concentrate on the good stuff – I am super lucky afterall – I’ve always said I’ve got the best job in the world, so about time I sorted myself out and cracked on – that’s my resolve for today!
Some lovely stuff has gone on today. We had a gentleman turn up at Sage House to see if we were open or not. Dianne spotted him and went out and spoke to him. She explained we were closed and gave hime an activity pack recognising he was pretty sad and a bit almost lost after chatting to him. She told him about the new befriending service and that he should just give us a call and have a natter if he fancied it – he said he didn’t want to waste our valuable time but she insisted that it was fine. Turns out his wife used to be a day breaks customer until a few months ago when she passed away – he’d been coming to Sage House himself – just popping in for a cup of tea every week or so to keep himself busy. Thank goodness – he rang through to the team when he got home. He admitted he’s very lonely, grieving and feels completely overwhelmed by his feelings especially as he now cannot go anywhere or see anyone for distraction. He was delighted with the pack and said it gave him some positive focus. The wayfinding team will work with him now for a bit – he needs more than befriending – he needs some emotional support for his grief and some mechanisms and techniques to help him cope and deal with his feelings.
We’re reviewing the draft of the 2nd edition of the activity pack – its been a springboard to so many other things that I’m keen we get this one right too!
Our first shopping requests are filtering through which is exciting news – its affording those who really want to and can, with an opportunity to get involved, so a couple of our trustees are on call to help out. It’s hard not to feel sorry for those you are delivering to – the referrals we get are those that have been filtered by Adult’s Social Care where there really is no alternative for the individual – no family who can help and those who have ben banished to lockdown for the longest amount of time. The trustee delivering Miss S’ shopping stopped and chatted (at distance) with her about hairdressers or lack of and all sorts of things! This was never going to be just a shopping service afterall – its about people seeing other people – hearing voices and presence of being……must talk to Martha about debrief for trustees…
An unexpected contact from another CEO of a charity elsewhere in the Country with whom I am networked on LinkedIn. He has suggested we have a zoom call to chat about where Day Centre services might head next to swap our thinking – he does something similar with people with autism. He said my blog which Ive been putting online has been a helpful read and reassuring! We’re going to talk next week – I like that this is helping others…..I also love an unintended positive cosequence of getting heads together to think about how we can make the next step as good as possible!
Going to bed happier tonight – proactivity is what I like and I’m beginning to feel it reemerge.
Friday 24th April
We’ve really started something!! After last week’s throw away comment between Dianne and myself i.e. “let’s dress up tomorrow in the office” we have turned it into a mini campaign!
Lots of meetings which started with an SMT meeting and then I went straight into the Board of Trustees meeting – so very proud – they all got into the spirit of the “Dress up For Dementia” #D4D and all dressed up!!
The meeting was good although I admit to the fact that there were some areas where I found it difficult to be focussed. I am struggling with meetings online and find I cannot concentrate as much as I can face to face – any more than an hour and I get fidgety and my attention span is certainly waning.
The struggle during the meeting was that none of us could do what, essentially, we should be doing or would normally do. The role of the trustee is to collectively agree the strategic aims and objectives for the charity. It is my job to work with them and help develop the strategy and then with my team to design and develop operational plans to deliver said strategy. The charity uses a system of committees split between, Services, Fundraising, Finance and HR who largely make the decisions and escalate those decisions to Board for information – again my role is to work with these committees.
The problem is we cannot set a strategy. We cannot make decisions. We do not know what we do not know. Some are struggling with that but, I think I am coming around to accepting that position now. We often use the phrase to carers of people living with dementia that you have to “go with the flow” you do not try to correct, do not argue as it is fruitless. I think “go with the flow” amply sums up where we might best be served for the moment with strategic planning. I remind myself and appreciate also that I am far more weighted currently toward the operational than the strategic. It’s why I find some of the conversations challenging as my priorities are gearing to customer and carer issues and how we overcome them and that of keeping our team tight, together and motivated. So upon reflection as I write this I appreciate I was a bit grumpy…..the board will forgive me I’m sure…
Following the Board meeting we went into our Team Coffee Break and it was great as a lot of the team got all dressed up too!! We then directly after went into a Dawn Gracie special which she Facebook lived from our page – she also got dressed up and explained what we were up to and announced that our theme for next week is the 1960’s!! Dianne is mortified! It was brilliant to think that some of our old customers were watching and enjoying – we had some of the nursing homes tune in too and even had messages to say the staff at a local care home were dancing around with residents – LOVE IT!!
I am home this evening on Friday writing my journal and actually I have to say that I am okay. The day was okay in the end – many highs mixed with a bit of grumpy, but I wasn’t filled with the sadness and anxiety I think I have felt in the last few weeks. I am still tired but less so (although maybe my body has just adjusted to it?) and I think I can see some light – I hear snippets of good things but I am still being choosey about what news I listen to. I am still wanting the 7th May (don’t get fixated Sally) for lockdown lift….really would love for us to enter our third year with renewed hope and vigour. My mantra is becoming a truth for me this will pass.
Until next week……. Respirer l’instant
A very lucky CEO
A very very proud CEO
Reflecting on the Week………
It’s Saturday morning and I was awake in the night again – internet shopping has become my friend in the last few weeks, as well as very loud, 80’s & 90’s music, which I am very badly and loudly singing along to (not in the middle of the night though – I live in a terraced house!)…..I guess it’s all about distraction at the moment, reminiscence to happier and more carefree times. I feel like everything is at extremes…..one minute caught up in those distractions and then plummeting into the reality of our current world – it’s almost like moderate doesn’t exist anymore?
I might be gauging it wrong – we are all in our own little bubbles and worlds at the moment afterall, but I do feel that there is a little more sadness around in the last few days. With the lockdown confirmed as being at least a further three weeks and knowing that in reality we are only three weeks into it, I feel that for others (certainly more so than myself even) there has been a shift in mood. The downturn in the weather hasn’t helped but it certainly feels that people who I talk to are moving away from panic and bewilderment and toward depression and for some almost hopelessness.
The numbers of Covid positive people grows but steadier than predicted in this part of the world, and still as part of the social care “system” we wait. I’ve spoken to a lot of others in the social care world over the last few weeks who all confirm the same – dates fly around constantly of who has heard what about when it might “hit” but the reality is no one knows – it’s all conjecture which we choose to either buy into or not. Personally, I am working toward 7th May for an end to lockdown. It will be Sage House’s 2nd Birthday on the 8th May since opening and personally I cannot think of a better way to enter into our 3rd Year. I am trying not to become fixated on a timeline though, as I don’t think it will be helpful for me, but I am holding onto my new mantra of this will pass as much as I can – it’s even written on the whiteboard in my office!
I feel like I am definitely talking to more people generally but perhaps that is because you have to make a special effort, it isn’t just a passing hello or unplanned exchange anymore. My role means I need to be talking to my team all of the time but now it means “zooming” or using “teams” to make contact rather than just wandering over to see them…oh for those days soon – I’m a people person so this is challenging.
I’m also in touch with family more, in fact my day started today with a lovely short video from my sister at 7am. It was a thirty second clip of my 1-year old niece playing with the book I bought her for Christmas. It sings the Baby Shark song very loudly at the touch of a button which little Sienna has just learnt to press – so clever! According to my sister this is not acceptable in the small hours of the morning but I cannot help but feel proud 😊.
So it’s been a shorter week due to the Easter break and the fact that I did as I was told by my SMT and took some time out means I have entered into the week refreshed…..
Saturday 11th April
Well I had a lay in! I didn’t get up until about 8am this morning and then I went and sat in my conservatory to type up last week’s blog. I also cover the phones on a Saturday these days – they are not ringing off the hook and currently we only operate from 10am to 2pm, which we’ve introduced since lockdown as we only used to operate during weekdays. That said when the phone rings at 4pm I still answer it – cannot bear to think someone needs to talk and no one answers.
I received a couple of phone calls from one of our customers, Mr P. He lives alone but has carers going in to ensure he takes his medication and has a meal of an evening. It’s so challenging for him as he likes to be out walking. Before all of this, his routine was to visit us at Sage House pretty much each day. He would talk to each member of staff to ensure everyone and everything was as it should be. He felt part of our family having been involved with the charity for a very long time and at times we would all joke that he was actually the one in charge of us. I miss this a lot.
We tend to ring him these days if he hasn’t been in touch by mid-morning, but invariably he rings early, and we chat at least 4 times a day. We tell him that we are keeping safe by staying at home and not going out and reminding him that he needs to do the same – sometimes he listens and accepts, other times we know he will be out within the hour. By the time I speak to him today, he has been out on the bus to Portsmouth and back, but says he didn’t get off. He says the bus driver (at Stage Coach who we work closely with regarding this gentleman) has given him a guided tour of Portsmouth pointing out all of the different historical places along the way – just the two of them on the bus throughout. I know I shouldn’t smile but he sounds really happy as we chat about his trip, how lovely the weather is and I do my best to convince him to stay in for the rest of the day – I know it’s unlikely as he’s fixated on walking by the sea this afternoon. We need to keep him safe, as we worry that soon his carers will potentially stop going in to see him if they feel that the risk is too high with him not self-isolating. This would of course be completely disastrous.Today I also had a lovely chat with Mr B – he told me had read the blog and found it an “uplifting read” 😊. He had managed to get a shopping slot at Waitrose in Chichester and does drive but his wife, who has dementia, has been poorly recently and he’s naturally worried about going out. I can tell he doesn’t want to ask, but it is what we are here for so I insist. The mind does do overtime at the moment, as we talk about scenarios such as what would happen if the car broke down whilst out etc. I tell him to send me the info – I only live a couple of miles from him anyway and can easily get into Chichester – I can do a bit of a shop myself so all in all it works out well. Selfishly I felt useful afterwards, like at least I could help if only in this very small way.
It’s been a hot day again which has been lovely – I managed to get outside to write up some of my blog which took 6 hours! Need to try and cut that down a bit but I’m getting really lovely feedback from people saying it’s a helpful and useful insight I will keep at it!
Late night – a couple of glasses of Merlot but I’m not working tomorrow so why not?
Sunday 12th April & Monday 13th April
I took two whole days off!! I completely zoned out from anything work or Covid-19 related – I did not watch the news and I pretended to myself that all was right in the world. I even took two naps on the Sunday and one on the Monday!
Monday evening and I sit reflecting on how needed the last couple of days have been, just how restorative it has been to do what I have. I reflect that I am lucky in so many ways – actually single life means that I can do what I want when I want – that’s a good thing! I have a lovely family who I have been facetiming and zooming – I’ve seen them – okay online, but I feel reassured and I know that they are safe.
The problem with these reflections is that it then leads to massive pangs of guilt. Largely those who work in Charities such as ours, do it for personal and vocational reasons – in fact I can hand on heart say that all of my team do, and I consider myself included within that. I personally have a need to make a difference to older people (always have) and particularly those living with dementia since I lost both of my grandparents to it. So I feel massively guilty about the rest and relaxation I have had, about napping when I wanted, choosing what I wanted to do and when, for lazing in my garden, using technology to see my family and being spoiled by the life that I have in what are terribly dark times for my customers.
My life is easy. I need to hold onto that for this will pass and then we can get back to building the charity to providing the meaningful and what is so evident right now, vital respite services for our customers. The worry then switches to how will that work? what will it look like? and when? but that’s for another day.
Tuesday 14th April
So, it’s starting to get pretty tricky now and it’s been a day of some real lows.
The residential and nursing homes are starting to be hit hard and we know we have customers who have had to go in because we have closed our services – this is such a sickening feeling and I can barely bring myself to think about it. My team are doing everything within their power to support our carers through this. One such local home, where one of our customers is residing, now has a confirmed case of Covid-19 and they have been on lockdown since the 23rd March. The reality is that it can only be one of the staff who brought it in and therefore the risk of it having spread to others is huge. Our carer is at her wits end. She only put him in the home during this period as she felt it would be less risky – with his complex needs he needs specialist support and the carer was concerned that as home care agencies often use temporary and agency staff plus swap shifts around a lot, that her loved one would be exposed to less people in a residential home – that he would be safer – especially given it was locked down. She did her due diligence and agonised over this decision.
She went from full time carer to someone who couldn’t even visit her loved one and now finds herself in this situation?? She knows that if he does contract Covid-19 its highly unlikely that they will convey him to hospital for treatment – they aren’t from care homes and worse still if he were to pass, she won’t be there. He was supposed to be safe – she sacrificed spending time with him to make him so and actually I cannot fathom any of this.
I also know it’s incredibly selfish as this isn’t about me at all, but I feel immensely guilty. I cried in the office ….Dianne and Luke help what could easily become me catastrophising as I start down the road of thinking I was ultimately responsible for that decision to close us – I know I had to but still it’s my name at the bottom of that piece of paper who gave the directive….they reassure me its not my fault. I am angry at myself for letting myself get upset – I have no right.
I’ve been told one of the local homes is reporting 12 deaths from Covid-19 and they’ve apparently got another 20 confirmed cases. Many homes are no longer accepting new admissions so quite what will happen when the hit comes I don’t know – I’ve heard that there is little or no rehab taking place instead people are being admitted to homes but no physios/OTs are able to enter because of lockdown. Some of these are young people who might have had a stroke or injury and been only a matter of a couple of weeks maybe even days were completely mobile and living independent “normal” lives. They need help to recover and rehabilitate which they now won’t get and the importance of early rehab is essential to recovery. The reach of this whole debacle continues to expand.
Last week we’d got so excited to have set up a bank account and benefits for our ex-offender who has a dementia…..but a “glitch” has manifested. The bank need a photo of him at the branch despite us knowing him and being able to vouch for him and describe fully – absolutely no flexibility – all we hear is these are “unprecented” times – if that’s the case why can’t these big beasts of organisations take some “unprecented” flipping action in order to make life a little easier for very vulnerable people? Unbelievably the only person able to help with getting the photo sorted was his daughter. She is an NHS Trauma Nurse on a Covid-19 ward!!! She had to drive miles, clearly stressed with what she is currently dealing with in her life, get fully gowned and masked up – to take a photo of her father which probably won’t even be looked at. She is fuming – I am fuming for her and don’t get our Wayfinders started….
Some good news today, Alight Media (digital billboard company with various nationwide sites), who were introduced to the charity via a new trustee have set up running a campaign for us around loneliness – they are generously working with us and we are taking advantage of some of their underutilised space currently. Amazing to think people in Scotland and London will be able to see our logo!
I am tired from crying, but I am essentially a bit numb this evening to some emotions – perhaps because I felt so good yesterday but I will see what tomorrow holds and hang onto the fact that this will pass………………….it has to.
Wednesday 15th April
This morning started with someone contacting us from Pakistan! Our social media presence has grown hugely in the last 4 weeks or so and we have been encouraging people to get in touch if they would like an activity pack to relieve the boredom. A lovely lady who is looking after her mother who is living with dementia found us via Instagram and asked for a pack – she was also desperate for advice and help. We are currently exchanging emails with her with some advice that she can use to help her family and she has downloaded one of our resource packs!
We had two collections of activity packs today one from a nursing home where one of our customers is, so knowing he’s going to get a pack is really lovely and that he will be reminded of us even if just subliminally is a really great thing to know.
I managed to catch up on quite a lot of my emails today and do some very basic things that have fallen by the wayside recently and which, in honesty, I am struggling to be interested or concerned with. They are however things which are important from a good governance perspective and now is not the right time to let that slip. I send out some minutes of meetings and get some board and committee meetings set up ready for the next couple of weeks plus manage to get through some correspondence that is woefully out of date but I hope everyone will understand. Then I opened the post……..
A customer had sent in a copy of a letter they had received from their local GP surgery which was dated the 31 March and I am completely mortified. Basically, the letter says that they are receiving this letter because they have a diagnosis of a type of dementia and that dementia is a condition that naturally increases your frailty level due to the deterioration of your cognition. It states they are more vulnerable with regards to the Covid-19 virus. The GP letter then says that they appreciate that the patient might be fairly well and active at the moment and that the letter might come as a shock. It says they don’t want to alarm or upset anyone but they’re taking the opportunity to prepare themselves and ultimately prepare the patient. It states that as the Covid-19 pandemic continues to worsen (remember dated 31/03/2020) it’s important to plan well for your future care by getting a good understanding of your wishes which will help your family members carers or clinicians to give the care wanted and where you want it. Okay so there’s some scary stuff in this considering the date……………
………….HOWEVER, the letter then sets out some background and explains how COVID-19 often presents and the treatment that might be required i.e. with a ventilator. It explains that currently hospitals are coping with the demand upon intensive care beds but that is likely to change as there will be an increasing numbers of deaths, admissions and confirmed cases……the worrying thing for me is that it then states that for the majority of patients with dementia conveyance to hospital in the event of Covid-19 viral pneumonia will not be appropriate as the body is unlikely to respond to treatment and therefore it’s more appropriate for patients to be kept in a place of residence where they can be kept comfortable and looked after around familiar surroundings and by people who know them. It talks about CPR for patients being virtually zero and then it asks the receiver of the letter to consider whether they want life prolonging treatment and whether they want to go into hospital??? After that??? Attached to the letter is an advanced decision’s form for completion!! Made more incomprehensible by the fact that two witnesses are required for the document. In this day and age are we really guilting people into euthanasia by suggesting “you are going to die anyway so don’t bother taking up resources?”
Martha is onto this with the CCG – I’m nauseated and need to understand how on earth anyone thought it would be okay to send this out to another person – I mean what on earth? What is the scale – is this just one surgery, are there more? People locked down unable to go see the sender or even speak to them at the moment – how can you be expected to make any such decision under these circumstances? N.B. I thought long and hard about whether to include this in the blog as I appreciate it will be an upsetting read for some, but these are the issues our Wayfinding Team are trying to support people with – these are the decisions our customers are feeling pressured into making
We are still at distancing plodding around the Tangmere airfield most days to try and get some fresh air – it’s not enough to help me sleep. I am averaging 4-5 hours and I have always been a 10 hour a night person…I suspect tonight will be a rubbish one again
Thursday 16th April
VERY small things bring relief at the moment such as discovering that you can change your backdrop on teams. Seriously “well done Microsoft”, that gave me a little excitement first thing this morning. I completely appreciate how shallow that likely sounds but seeing Lisa on a beach surrounded by palm trees in our fundraising catch up made me feel a little less blue, if only momentarily.
Virgin have just announced that as the marathon cannot now take place that they are launching the “2.6 challenge”. The team in the office have given it a lot of thought as have SMT, so now Lisa and I have lots to discuss so that we can link this to what we are doing and our charity response to it. We have an amazing local community and corporate partners who we are sure will want to get involved and do something. The idea is that people take part in an activity of their choice based around the numbers 2.6 or 26 and raise some money whilst doing it. Ideas include: running around your balcony for 26 minutes; doing 26 press-ups with the dog on your back??; singing 26 songs; being silent for 2.6 hours (perhaps one for the kids?!). By lunchtime Luke has finalised the artwork and uploaded the content to the website – Dianne has organised to get some of her supporters involved and videos with people saying how they are going to support are going out on social media. I am staggered at how quickly my team is working now and turning things around…..seriously staggered.
We are busy trying to keep up with all of the legislation changes around furloughing and HMRC and are approaching our deadline to run payroll for the month – thank goodness we have the support from James Todd to support us through it. It’s a minefield for a little organisation like us and I wonder how even smaller charities are managing with fewer resources than ours.
Dianne and I have a discussion in the office. It’s fair to say we both probably spend too much time shopping online and buying clothes. Whilst completely inconsequential in today’s world, we are moaning at how drab we feel as we have only worn jeans and t shirts for the last 3 weeks, whereas normally we make a little bit of an effort to “look the part”. We decided to stop moaning and sort it out, it’s a problem within our gift to negate, so we agree that tomorrow (Friday – (which has also become Pizza day at Sage House incidentally) we would get smartened up and make an effort! We tell Luke he has to wear a suit and tie too! His face was funny, but I think he will oblige – I’m not sure he even wore a tie to his interview only 7 months ago!
A high today is that we have just added up the number of packs that we have sent out to vulnerable older people in our local community and it totals 812!! We are all shocked and amazed and are getting some amazing feedback.
The low…..I am feeling fearful….the latest statistics were released this afternoon from the ONS (Office for National Statistics) relating to Corona virus related deaths in March and it is grim, worrying reading. It’s been reported by the BBC News and basically shows that 9/10 people who have died from Covid-19 are people who have pre-existing health conditions, which you would probably anticipate given the reporting. Sadly however dementia and Alzheimer’s disease was the highest condition that females over the age of 70 had as well as coronavirus in March. The older males over 70 is also a very high figure, although does fall behind those who are living with Ischaemic Heart disease. That’s for March. It terrifies me about what is going to be reflected in these statistics for April, especially given what we know with regard to care homes and their levels of Covid – I am desperately trying to hang onto the fact that this will pass but in honesty it’s a challenge as I write my journal tonight.
I am definitely missing having the team around me – I guess I am a sharer and my SMT and I all know one another well enough to know when one of us is maybe off kilter a little – including the approach to take, the questions to ask and how to support each other. If this had been at any other time with the ONS stats that came out today, we would have likely sat together and talked them through – we would have reasoned it out and shared how we felt about them – we would probably have felt strong together to discuss the impact that it might have on our own customers, but instead, alone I choose to not let me brain go down that road – I acknowledge the information and then put it away in a box until I feel happy to bring that out again. I’m not going to pretend, I am worried – not for me but for our lovely customers who I can only hope are staying as safe as they can. I need to make sure they all know that we can help them with shopping and prescriptions – they must stay inside and keep safe….need to push the advertising of what we can offer more…..off to bed – I need sleep.
Friday 17th April
Today we’ve done the “dressing up” thing which has invigorated me to a degree – another distraction as we decided to turn it into a fundraising initiative! Distractions are very helpful at the moment. We launched, albeit “organically” as Luke refers to it, Dress-up for Dementia [#d4d].
Essentially, we have introduced the reverse of the dress-down day concept where people give to the charity by texting and then get dressed up for the day for their zoom meetings etc. We’ve invited people to get their teams to dress up smart for their virtual meetings or if people are having a virtual quiz/bingo etc that they get dressed up to participate and support the charity at the same time! (Dianne and I are wearing evening wear next Friday!!) It’s not for everyone of course but it lifted our spirits in the office and my morale.
We had a team zoom chat with 22 of us involved – I know I keep saying it but I do miss them so much. Some were unable to join as they were feeling a bit low and some couldn’t because of the number of cases we have on the go – some new customers to wayfinding and such complex needs but in these times all of the usual things that we might suggest are all irrelevant. Including go outside, get some fresh air; can you get some friends to pop around etc…Also you build trust by meeting with people and demonstrating to them what you can do and face to face is truly best when trying to offer emotional support.
I need to make sure the team are ok and feel supported too with proper clinical supervision too where appropriate – the emotional drain is tough and the offload is important – you cannot carry this stuff around as it festers.
At the zoom meeting everybody had a minute to talk about what they’ve been up to again, some sadness was certainly shared but it’s really lovely that as a team they are coming together [virtually] and feel able to share. They are all actively talking about being lonely; about the challenges of working at home and home schooling their children. I truly believe this will only go to build a more collegiate approach going forwards, which actually was really brought to my attention by an email that I received from one of the team afterwards. They talked about missing Sage House but that they have a feeling as a team we would be stronger at the end of all of this…..so lovely to hear and what I really needed to hear from someone who had no agenda or need to reach out.
The packs have been so very well received – we have a further 100 coming on Monday but will then run out, but we are already working on the second one!! We have so far sent out 912 packs, 50 of which to our current customers.
This means that we have so far reached 862 new people to Sage House, these are all older vulnerable people and this all in just two weeks.
It’s pretty immense and all due to an amazing team effort which started by getting the content together in which the whole team played a part. The design, print, packing and delivery have also been crucial which has involved many volunteers, trustees and family members.
None of that though would have happened without the dedication and tenacity of each of those people and their desire to make a difference at this dark time to the people who need it the most……that is what the Dementia Support team do…..it’s what makes us very special.
Until next week…….
A very very proud CEO
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