Reflecting on the Week………
As is now becoming habitual, it is Saturday morning as I collate those bits of my journal that might be of interest into this blog. It’s slightly later than the previous weeks, my sleep pattern is getting into more of a rhythm overall and the sunnier, warmer days are definitely helping my overall mood. The ball of anxiety and worry is lessening generally (I think) as I am starting to recognise some things in my life that I can be grateful for and even look forward to once this is all over.
One such thing is that my daughter has been accepted to study her Social Work degree – I am so very proud of her! She’s an Assistant Care Manager currently and based in the largest acute hospital in our area, which is something that has played heavily on my mind in the last month. Knowing that she is exposed, more than most, by her environment is scary and the lack of “basics” – latex gloves at one point for heaven’s sake, and PPE itself has been beyond worrying – I will leave it at that but I was sickened by some of what I heard which was only reinforced in the national news repeatedly. I worry that she then goes home to her/my precious little young family and whilst she is a professional and knows how to minimise the risk, I can’t help but feel anxious.
My daughter and her colleagues are now essentially waiting for this “to hit”….they’re normally a super busy team dealing with some of the most vulnerable people in our society and they’ve been even more manic in the last 3 weeks discharging people out into the community – doing their best to clear wards and beds in readiness. Covid wards popping up around them. They have also, in the last few weeks, been “skilling up” to deliver direct care, so that they can frontline personal care delivery itself, should the bottom drop out of domiciliary care provision locally, which is a big risk. Like us all now though they wait…..
It hurts not seeing my family a lot – like everyone I guess but I think it feels worse living alone? I managed to see them for a couple of minutes at a distance during the week, so as to give them something. Whilst lovely to feel their presence, the experience was made so much harder when my little 3 ½ year old bubba blew me a kiss from inside the car and said “I love you Nanny, see you properly when the virus has gone”…..I walked into my office and cried….sobbed…..it’s all so very wrong. Wrong that a little one of that age uses the word virus. I appreciate that she doesn’t know what it means but even still??? I honestly felt like I’d been kicked in the stomach afterward, by the fact that I couldn’t cuddle her. Facetime isn’t the same. The wave then hit of guilt, for my utter selfishness – at least I am getting out and about, furthermore I have the knowledge of knowing I am contributing in these times – I really can’t think how any of our customers are getting by day to day, without the family connections, without going out without any respite from their little worlds….especially those living alone.
I currently feel a general sense of nervousness – not an excited nervousness though a scared and unprepared one…..like everyone I guess? We can all see the numbers in the news, but it still feels unreal to my personal world although my reality might shift again as we’ve had one of our ‘established’ customers just be confirmed with the virus now. I know I am not being realistic, but I really don’t want that number to change.
So, here you have the last week of my journal…as usual too much detail and too long – so my apologies in advance!
Saturday 4th April
I feel okay today I’ve woken up early, 5.30 am, but I’m alright and I’m just cracking on trying to catch up with emails. I’ve an inbox no one would be proud of – over 1000 emails all which need an answer. I’ve been disciplined in the last few days to immediately delete and file those that don’t need a response….so I know I need to crack on. It’s a quieter Saturday compared to last week, but I probably need some more of my “normal” work to enable me to ‘downtime’ a little from the continual adrenaline that’s running through me. I’m simply working at home and essentially blogging my life!
I then touch base and am messaging with an ex. Colleague who works in a very Senior Management role in Social Care in London – they are a week ahead of us in this debacle and he tells me it is “stepping up a gear”. I can truly hear the anxiety in his messages. My worry is always for customers and my team but he’s feeling guilty and completely awful at “sending his teams out during these times” – he’s worried that they will start getting Covid and frankly, dying, and that “he’s sent them in”……his PPE levels are still not all as they should be and the advice at this stage anyway is that “unless a worker is going into a known Covid positive environment, that they don’t need it?”. We eventually reason that people on the frontline do what we do because we need to make a difference, that people know and understand the risks involved and that it’s about staff making informed decisions and choice ultimately.
We then however talk about the thing that’s scaring us both the most…. Not something I’ve found able to verbalise until now. It’s a thought we have both had, as I guess a lot in our types of job probably have had too but having a discussion about it makes it feel like a real scenario not something far-fetched. Will someone, and if so, who, will make a decision that no care should be given to anyone who is Covid positive? The decision to withdraw care and just leave people to get on with it is completely incomprehensible to me – seriously my mind cannot cope. I can’t grasp the idea of people passing alone – but will we be forced into that position? If one of my customers cried out for help, how could I ever not go? My duty of care means I would never expect any of my team to go, but me personally, never….I feel defeated by this – I am always half glass full, spot the opportunities and silver lining but that conversation has floored me and I feel empty.
I can only liken it to how those in the military must feel maybe? Sending people into such risky situations – such massive respect for them.
Highlight of my day was chatting to Mr P on the phone a few times – the sunshine today has really lifted his mood – we’ve been really concerned about his anxiety levels recently so, to hear him jolly is simply lovely. He’s continuing to go out though – we speak to him a lot during the day and try to get him to stay home but he doesn’t understand or remember so continues to go walkabout. We’ve done our best to ensure as many people in “authority” know as we are concerned, worried that he will get into trouble especially if he’s anxious already if approached. But today he is happy – jovial in fact and that helps to lift my mood.
Sunday 5th April
Up at 4.00 am – the whole people dying alone thing is really playing on my mind – it’s like some kind of apocalyptic film that I would never even contemplate bothering to watch because I only like plausible things – but here we are? Funerals taking place without anyone present. A member of my team recently lost a family member and has had exactly this situation in the last couple of weeks. The best that could be offered was to drive their loved one around the different family member’s homes before the funeral so that they could at least see them for one last time and pay their respects from behind closed doors. How can you get closure from that?
This is all nonsensical…..my mood has shifted to actually being pretty angry though so there was only one thing to do….chores!
I spent the day doing housework, gardening and finally doing my nails! It’s so good to be distracted – the state of the house and garden have been annoying me as I’ve been putting in so many hours and don’t have the energy nor inclination at the end of the day. Being busy like this is a good diversion to what is going on in the world especially as I am blasting music from my youth and pretending, I’m 21 again! My SMT have been telling me to take some downtime – if I’m honest I’ve avoided it a little being on your own is no fun currently but of course they are right, and I feel so much healthier for it!
At the end of the day I sit with a glass of Merlot and a realisation hits – my underlying concern is that it will be me who tells my team and reinforces that they cannot go and sit with a customer in the situation that’s been playing on my mind. I feel responsible, accountable….I know that I am not though – Covid-19 is…….I have to believe and hold onto the fact that THIS WILL PASS
Monday 30th March
Today we held a team coffee morning via Zoom which was so lovely!! To see 17 members of the team all smiling back at me was great. Zoom meetings are difficult to manage and some of the team are better with tech than others (you know who you are!!) I feel I’m getting quite good now at chairing zoom meetings and we got into a rhythm as I gave everyone an opportunity to chat for a couple of minutes about what they’ve been working on and how they’re feeling and basically share with those who they normally spend so much time with and now cannot. I know they are all keeping in touch between themselves but having them altogether was fab! My only complaint is that you have to have everyone mute themselves otherwise it’s too much, so you don’t really get any feedback, ‘chat’ or laughter etc – I think I miss background noise a bit! We agreed we are going to do that twice a week now – just 30 minutes so we keep the team bond going.
Went for a walk at lunchtime must try and find a different route as it’s getting boring now!
We started to get some of the Activity Packs together and out for delivery to our Sage House customers. A couple of trustees also got involved including our chairman! Loved the photo his wife took who was helping him navigate around. I think he welcomed the distraction and the fact that he was actively playing a part in making it feel better for vulnerable people and our customers who we all miss so much.
One of our trustees actually sent her son (he’s 19) who is struggling with being locked down and he was out delivering in Southbourne and Bosham all afternoon and Dianne took Bognor. I went and delivered to customers in Littlehampton and Yapton which was great as I got to see some familiar faces albeit through their windows – felt like I had achieved something at the end of the day because of this – I like to “do” not just talk and write about it – I like tangible and it’s a need in me which is really strong right now.
I still have that feeling of everything being so surreal but it is starting to feel a bit more normal now – the quieter roads and the louder birdsong – the lack of engine noise from cars and planes everywhere – cyclists everywhere is a bit annoying though 😊. I hate the way everyday language has changed though – commonly used phrases like lockdown and social distancing which just didn’t exist really 3 weeks ago.
We continue with the call lists to our customers and we’ve also had some difficult cases on the phone. Carers really at the end of their tether with what’s going on currently – you can understand why people will want to take risks as the lockdown continues – anything to break the cycle of anxiety that some with dementia are entering into.
Guidance related to care giving is coming out from the Department of Health, NICE and Public Health England, left right and centre – dementia seems to have fallen off the inclusion criteria list though which is really frustrating – yet again pretty much ignored. Autism and learning disabilities are often referred to and I am super frustrated about it – just not helpful…..the complexities of living with a dementia are difficult at the best of times let alone now.
One case feels really hard that Martha is trying to deal with. It involves a woman living with dementia in a care home and her son. He has previously had to fight to ensure that she has received the right care as four years ago her dementia returned her to a time in her life where she was anorexic which meant she then refused to eat. Her son had to go through 3 court hearings to ensure that she received the right care and be PEG fed as the hospital refused treatment to her because of her age. Now he fears that NICE guidance will not ensure that his Mother will receive the correct treatment if she was diagnosed with health issues or COVID-19 and fears that she could die alone in the care home – his anxiety levels must be though the roof and it’s so difficult to know how to support him.
It’s been a busy day but active and I go to bed happy that the team on the face of it seem okay and holding up – must book next zoom meeting for Thursday!
Tuesday 31st March
So, life is definitely returning to some sense of normality in that I have had four meetings today – all virtually of course!
The first one was around the research paper that we are considering putting together to demonstrate how we are responding to the Covid-19 crisis and importantly how the actions that we are taking compare to other geographic areas and of course the impact upon people living with dementia. We need to give it more thought and Sue is putting the detail together. It’s important that we get the data side of things sorted at an early stage in order that we can demonstrate how actually the interventions we’re putting in have helped make things a little better for people.
We had the daily SMT meeting for an hour – I think we can start to think about moving these to be less frequent as staff, ways of working and our new services are starting to settle.
We next had a Fundraising Development Committee which was okay and again held via zoom! I told them to sit still while I took the picture – very funny Andy Taylor-Whyte!
A useful meeting to discuss and share plans to launch an emergency appeal regarding Covid – Lisa had written a brilliant paper about the external fundraising environment feeding back the intelligence that’s starting to come out and how that might play out with us. It’s a scary read and includes the fact that; Charities report a projected loss of 48% to their voluntary income & a third wiped off from their total income; 52% of charities have reduced existing or previous levels of service, with a further 12% intending to in the future – like us having to close day breaks. 84% of charities think their organisation could play a role in responding to the coronavirus outbreak, with the majority saying that government funding was needed to help them to do so…..we are definitely in the 84% and finally 91% of charities surveyed have already had their cash flow disrupted – this definitely applies.
I suppose it should bring some comfort knowing you are not alone in this but it doesn’t – we are such a young, dynamic and ambitious charity – we just want to share the magic formula we have found in supporting people to live well with dementia and with as many people as possible and we are being thwarted by a virus. So many big plans for this year lost….. My frustration is definitely more feisty at the moment but this makes me sad….we could have helped and supported even more people.
Anyway, back to the committee meeting – Lisa’s paper was received really well – everyone listened and agreed with the approach that Lisa and I had discussed around plans of action and timelines.
After the meeting, Dianne Luke and myself went for a walk and decided to deliver some leaflets for the befriending service – a beautiful day again and nice to have a feeling of “doing”.
The afternoon though plummeted for me personally. After much soul searching, talking to various trustees and SMT, I took the decision to furlough some of the team. I simply haven’t the work for them – some have had nothing for a few week’s but I’ve held back waiting to see what gaps appear and if I need the resource to fill them. If I could find anything that could use their amazing skills then I would at this time, but I have to do what’s best for the charity. HMRC have agreed to fund 80% of salaries and following my recommendation, the trustees have agreed we will top up the other 20% – people who work for small charities don’t earn big bucks – it’s a vocation and people still have families and bills to pay during this nightmare.
I telephoned each of the seven staff impacted myself – they weren’t difficult phone calls to make in terms of how the news was received. Quite frankly you are essentially saying “please can you take the next, likely seven weeks off of work, and we’re going to pay you in full and make sure you’ve got a job to come back to”. It frees them up to go volunteer somewhere if they wish and actively contribute should they choose. For some that probably isn’t what will happen. They fall into a slightly higher risk group, so I am confining them is how it feels with no way of breaking up their day for them. What I found hard is a selfish thought and reaction which I am a little ashamed of. It made me feel and admit really that those services we’ve had to close such as our café, the day breaks services and our lovely activities just aren’t happening anymore – all the while I had the team, in my head, I think I had the services??? They really have closed and that’s difficult, really, really difficult – an admission of defeat I guess is how it felt. Of course, I reason that I know it’s going to come back but when? How will it work? How long will they make us socially distance after all of this? How can we operate anything in that situation? These are all such big unknowns currently and I hate not being in control!!!
Some sad news today with one of the customers yesterday having had a TIA and more cases where people are struggling at this time. There are safeguarding issues that we’re dealing with and we need to talk to the police about how we deal with some of our customers who are out and about all the time – what’s going to happen if they start fining people or arresting people if they go out of the house especially people who have dementia and don’t understand the lockdown guidance?
I popped to see the chairman after work as I needed his urgent signature on some documentation – we social distanced and bless him……I’ve always admired a little private wooded area next to his house – especially at this time of the year when the bluebells are out so he popped two chairs in the middle of them – probably 4 metres apart (he’s very risk averse) and we sat and just chatted for a bit. About life as it currently is and neither of us with any answers, just concerns about how we come out of this at the end from all perspectives.
It was lovely to just sit there and listen to nature – even the bees seem busier and it feels a little like the outside world is coming alive, which is probably reflective of the fact that the human race is slowing down – I’m sure there is a lesson there for this will pass.
Wednesday 1st April
Despite ending the day with a feeling of relative peace (well as far as possible in these times), I am awake at 4.00 am unable to sleep and I’m furiously writing to do lists. Despite last week boldly saying we are staying open on the phones throughout the bank holiday period, it’s only just dawned on me that it’s this weekend. We are still reactive in regard to our social media and designing and developing content as we go, and we need to make sure we have enough to fill four days to ensure our supporters and customers have little updates from us….some tell us that they are looking forward to see what will pop up next on our pages as we are trying to ensure we positively message and share things that are helpful for people self-isolating. I also need Dianne and Luke to get some downtime as I know (given that I’ve had conversations with them over the weekends recently) that they need a decent break, so I want to be organised.
I went into work probably a bit grumpy as I am so tired – I’m emotional and crying at songs that come on the radio for goodness sake! I must get more sleep tonight!!!
I have spent the day pretty much in meetings, first with SMT then in a one to one with Lisa to catch up on her world and how all of her team are doing at the moment – I am normally pretty close to the fundraising team as we share the same part of the building and it’s sad not getting to talk to them directly like I normally do.
Andy, Isla and myself then had a zoom meeting with Age UK and it feels like we have really forged that relationship now and will be talking referrals for shopping and prescription calls covering the Chichester area from next Tuesday – interestingly they’ve decided to close over the bank holiday period but I guess they are much bigger than us which makes it trickier. I love being a small charity at the moment – the agility we have in responding is really refreshing. Of course, Isla and Andy instantly ignite into action around the practicalities of another new service being up and running within a couple of days! By the end of the day procedures have been drafted, spreadsheets built, and processes walked through – I am so lucky to have them!
The packs are getting so much lovely feedback and we’ve had lots of emails requesting packs even from well outside of our geographic area but that’s absolutely fine and of course we oblige.
It was pretty late in the working day, ?5.30 pm and I was in a one to one video call with Isla when she received a phone call from a gentleman in Manchester, really worried about his father particularly. They desperately needed a prescription picking up from Tangmere Surgery and he had managed to find our details online. What was lovely was me listening into the call and gesticulating to Isla online that I could go and do it immediately on my way home! I picked it up and had it dropped around within the hour along with a couple of activity packs! He was over the moon and had been trying for three days to get it sorted – he tried giving me money bless him but I said no! (Don’t tell the chairman!!)
I stood chatting at a distance for about 15 minutes – bless him clearly struggling with this new world of ours. It really felt nice to do something again – it was less than a mile of driving for me – I could have walked but I was on my way home. Such gratitude from something so little is humbling.
I’m playing text message tennis with the CCG at the moment about the idea I mentioned last week – it’s still a watch this space and the director I am talking to is whinging that things are moving so incredibly slowly. Sadly that’s just the way statutory land is and that’s why I left it!
I came home today to find a leaflet through my door from West Sussex County Council asking me if I needed help with shopping, picking up medication or a friendly phone call which I thought was quite humorous given what we have been doing and offering since Covid has broken 3 weeks ago, however hopefully with their leaflets going out through the doors it will mean we get more traffic and referrals across from them. What they can do is capture everyone with messaging unlike little old us.
I get an early night – I made a difference today to a lovely man who needed his prescription and I will take that. This will pass
Thursday 2nd April
600 more packs arrive today, and a video’s gone up on Facebook of them being unloaded which seems quite popular! One of my trustees came in and together with Dianne they must have packaged up more than 200 to get them out! A couple of Parish Councils have taken delivery of their’s and are just super happy to have something that they can give out to their parishioners at the moment to break the solitude and inactivity.
We had an SMT meeting and agreed to reduce these to twice weekly as we all feel we have got a rhythm now on the go.
We then had another “virtual cuppa” whole team meeting which was really lovely to see everyone – I think there were 22 of us who dialled into it which included 3 new members of staff who are waiting to start with us. We interviewed them for positions early March before this all hit and I can see as they introduce themselves that they are so keen to start! It was lovely though for them to start getting to know the team and what we are up to and hopefully it will make the delay in their starting slightly easier.
Update on our Bournemouth chap who I previously mentioned (ex-offender) – great news – we’ve sorted him with a bank account and his universal credit will be being paid into it. He’s also received his food package, so another win for the Wayfinding Team.
We’ve a couple of day breaks customers who we’re really concerned about at the moment – it such an emotional time and anxiety levels are really starting to creep. Jane and Reece still busy on the phones and spending time with our customers talking to them. Another we are concerned about and think they might well end up placing their loved one in care – I cannot begin to imagine how hard that decision is to take and how unfair the whole situation must feel for her – bringing her loved one to Sage House a couple of times a week gave her just enough time and strength to stay resilient, to cope and to manage.
Martha is doing some work with the Patient and Public Engagement team at the CCG regarding a couple of customers and we’ve heard some lovely stories too – one of our customers (he was really concerned about keeping his wife at home when we said day breaks was closing) has become super innovative! He’s been making skittles out of plastic bottles and all sorts and I feel sure that Martha and her team have played such a part in unlocking that part of his creativity and have shown him how these sorts of things make such a difference to his sweetheart.
We’re now identifying more resources to support people so some things around instructions on “how to walk indoors” and how people can use Google Maps for reminiscence purposes. It’s going to be a hot weekend so we also will get something out about staying hydrated – there’s nothing my team don’t think of 😊.
Sylvie got a great volunteer update out to all of our volunteers – she is even telephoning those who do not have an email account to check in with them each week! Some of our volunteers have also put together a “Reading Friends Recommends” document to share with fellow volunteers so that they are participating in an activity altogether – a great collection of poems and Teresa has written about her cat and his approach to Covid-19 which is comical!
Lisa managed to get a great update out to our supporters this evening where she pulled together what we’ve been up to so hopefully people are feeling informed about our work at the moment and understand what we are doing even if it is very different from our business as usual.
A late finish as I had a lovely informal meeting with one of my trustees as she needed packs for her family and neighbours – so nice to see different faces in the flesh today (sorry Dianne and Luke!!). On my way home I delivered a pack – postcode was wrong as although it was literally “on my way” I think I ended up driving ten extra miles!! Nice to see the customer though when I finally got there. Note to self; must get Petrol.
I’ve also managed to sort some more normal things, like banking and some personal financial bits that I suddenly realised I’ve not been keeping up with! And at 8pm I went outside for the handclap which was uplifting and joyous – nice to see and join with others to celebrate the good that’s in the world – those people who are risking their worlds for us – thank you NHS and Social Care.
Friday 3rd April
I’ve listened to Isla and Martha who have both been very direct that I need to take the day off and I have pretty much. I weeded the front drive and I’ve sat in my garden and read and I’ve also got pretty sunburnt! A truly beautiful day and I feel refreshed, lucky and good for the break.
When I read this back there are some extremes and I want anyone to know who is reading this that they really do not need to be worried about me – a couple of people have said it now! My journal is honest and you get the warts and all – I would reassure that I have a very high level of emotional intelligence which means I whole heartedly believe that I have a very strong awareness of my own feelings and how best to manage and cope with them! The journal is in fact part of that process!!
I thought long and hard before taking the decision to share my thoughts and feelings during this time and the reason I wanted to is because if it enables one person to say “actually I’m relieved someone else feels like that” then it has served it’s purpose.
Until next week…….