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