Sally Tabbner’s Covid-19 Weekly Diary – 3

Dementia Support's Chief Executive Sally Tabbner

 

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…….

Sally Tabbner

11/04/2020

Sally Tabbner’s Covid-19 Weekly Diary – 2

Dementia Support's Chief Executive Sally Tabbner

 

Reflecting on the Week………

As I put this blog together from my week’s journal it is Saturday early morning and I’ve just had a complete meltdown as my boiler decided to stop and display an “error” code.  The house is freezing cold, I’ve no hot water and I am, of course, on my own.  I’m normally such a practical level-headed person.  I know how to sort these types of things out – just take a breath Sally and look it up on you tube or google.  BUT instead, no, I lost it!  I cried and went into instant panic over a “F75” error message, whatever that is?? my head instantly leapt to; are plumbers even operating at the moment?; would they come out?; I’ve distanced for 2 weeks now and had no one in my house; how do I prioritise this – do I want anyone in my house with everything that’s going on?;  How much would that even cost in today’s situation?; All things that three weeks ago simply didn’t exist……

Suffice to say half an hour later I’ve looked up “F75”, I’ve found the solution, pressed all sorts of buttons on the boiler and run taps and thankfully my heating and hot water are working again.  But now I’m actually annoyed …..firstly with myself for not keeping calm, secondly because if that’s how I felt, in that moment, how on earth would one of my customers deal with something like that right now with everything else that they have going on in the world?  This whole Covid situation is complete mayhem, everything is upside down and strange but in amongst it all actually “normal” stuff is still happening in a world that is far from normal….I’m sad at how absolutely cut off the vulnerable people we support must feel right now.

So, here you have the last week of my journal…well the bits that I can share!

Saturday 28th March

Woke up at stupid o’clock – NEED TO CATCH UP!!! in fact it was 4.30am and I couldn’t get back to sleep.  Got up and had a coffee and decided that I may as well crack on as lots to do! I am carrying a ball of constant anxiety in my gut at the moment and I’m getting frustrated over silly inconsequential things at the moment.  A good example is that myself and the senior management team have, since mid-January, spent so much time detailing out the financial projections for the coming year and getting our budgets as accurate as possible – a hard job in any new business.  This is now all completely out of the window and I know it shouldn’t matter as it’s not important in the grand scheme of things.  The current “unprecedented” (seriously I am OVER that word) position means I have absolutely no idea how to model the budget for next year though? How can you plan for something you have no answers for in terms of what/when/how/where/who – the only thing that is clear is the why at the moment and even that can’t be understood.

I’ve plumped in the end for two financial scenarios to share with the Board and revised the budget and cash balance forecasts for them to look at.  I have removed all fundraising income and revenue from services for a three-month period plus what I think expenditure might look like based on a mothballed Sage House.  None of us have a clue really about what will happen with fundraising – money is almost meaningless in the current environment for people but sadly, in charity world it’s more critical than ever if we are to respond and support on the frontline.

I was then covering the phones for four hours, as we have opened up our help and advice lines on the weekend during this period – spoke to a few people including one of our regular special callers – feels lovely to hear his voice even if we cannot see him at the moment and I personally feel better for some human contact even if on the telephone!  I prepared the rest of the Board papers for our emergency Board of Trustee meeting on Tuesday and circulated those around and then I started on writing my blog.

Finished up around 5pm, sat on my sofa and promptly fell asleep for two hours! I am exhausted and I feel a bit emptier – the anxiety ball slightly smaller perhaps and I deduce that I have probably found a way to offload and download my emotions, by blogging – hurrah! That’s helpful!

I remembered at 10 pm that the clocks were changing “Well that’s blooming fantastic!!” I really need an hour’s less sleep at the moment, but will I guess welcome British summertime and the lighter evenings during these darker times.

 

Sunday 29th March

Little sleep again – probably my own fault for having fallen asleep during the day but I’m also worrying about the size of my email inbox and knowing people have been in contact offering support and I’ve yet to respond to them – it plays heavily on my mind – I spend enough time telling others that we need to look after our supporters so that makes me feel a bit rubbish – hopefully people will understand with everything that’s going on.

So, had to be at Sage House by 10.30am for the BBC reporter and cameraman.  Such lovely people both of them – interview had to be outside which I hadn’t necessarily considered when applying my hairspray – windy day – hair very interesting!  They wanted to interview a customer and luckily Martha who was covering Sunday phones managed to get hold of our customers Paul and Linda who agreed to a meeting via zoom to talk about the impact of our activities having to stop. Well thank god Luke had come in.  I would not have known where to start! It was odd in fact bizarre watching the reporter sitting on a rock, in the freezing cold outside of Sage House, balancing my laptop on her knee, Luke talking her through how to record on zoom as she interviewed customers whilst being filmed by a cameraman – goodness she managed to keep her composure well!

Took about 3 hours in the end to get all the information, shots and interviews together and they said it would be out that evening which was pleasing! Went home and dosed on sofa again for half an hour.  I need to watch these afternoon naps don’t become a habit, although sleep is meant to heal so maybe I shouldn’t be too concerned.

Spoke with chair of trustees and updated him on what was happening re BBC and he emailed out to the rest of the trustees to let them know to look out at 6.50pm on South Today and then we waited……WE WERE THE FIRST ITEM!!! It was helpful that only today the Guardian and general media have started to pick up on the plight of charities during this time, so actually our press release had been really timely about our anonymous donor.  Really pleased with the piece that they produced, wish it had come across stronger that we are still open and running services though.  They make the point, but I worry it might get lost….in any case it’s a great representative piece of our current position.  I’m pleased – I feel this is a positive in the gloom.

Less than 20 minutes later I am texting with Martha.  She is really worried about one of our customers…..the highs and lows at the moment are phenomenal.   The customer used all of our services at Sage House before including the day breaks service but is now in Residential Care.  Due to lockdown his wife has the absolute torment of not being able to visit and I can’t even begin to imagine how she is feeling. Added to this the home are ringing her up and telling her that he has been involved in “incidences”.  She has not seen him for two weeks and she can’t communicate with him by phone really because of his dementia, so what on earth is she supposed to do with that information??  His anxiety levels are likely through the roof – everyone’s are and he hasn’t seen her for an age – he doesn’t understand what is happening and the home ring her, to tell her about things she cannot affect in anyway – because that is their process??? It’s what they always do??  I am so cross, so annoyed…….of course what she is considering doing is driving over to the home and taking him out of it to try and look after the man she has been married to for over 50 years – a completely impossible task which is why she took such a difficult decision to place him into the home with the “professionals” in the first place.  She is lost, confused and doesn’t know where to turn – she’s getting mixed messages and she can do absolutely nothing about it. 

Martha and I discuss by text and email what can we do to help…..in the end I suggest I go to the home in the morning to speak to the home manager directly and then visit her – she only lives a mile away from me and she needs face to face emotional support as she is pretty much in crisis.  We talk about how we can manage the incident reporting process during these times and Martha rings her on a Sunday evening to tell her what is going to happen and how we are going to help – she feels better already – like the charity has her back and that she isn’t alone.  Martha has probably spent an hour and a half on the phone with her today – that’s what our charity does – what people need when they need it….

I go to bed and I am feeling sad again! Why do people not consider the impact of their actions? Why don’t they consider the emotional wake they leave behind? How did the home, that person who made the call, think any good was going to come from the phone calls that they were making to that poor lady today other than to tick their boxes and say they followed due process?

 

Monday 30th March

Awake early ……spent some time hatching plans this morning with Martha about how best we can support the person I’m going to see this morning and we agree that it is by being the conduit between the Home and them.  The beauty of what our team do is that they properly know our customers – we call ourselves a sticky service because when someone comes through our door we nominate someone to stick with them throughout their journey, warts and all.  This means when it comes to these difficult situations we don’t have to ask questions about history or incidentals – we have seen them through it all and it means we can respond appropriately and importantly very quickly, which is what people need when they hit crisis – not to be asked 5000 questions.

I head over to the nursing home, uninvited and ask to speak with someone……it’s interesting as they are sheepish, even somewhat apologetic but also, I believe, trying to do their best too.  They are in a pickle of course – residents are all struggling with the lack of visitors, people are frustrated, lonely and anxious which means that all senses are heightened, and situations easily escalate.  I feel for them as it must be so very hard and realistically, they are trying to do as much as they can in all of this too and they clearly care about their residents. 

We social distance outside of the building.  I explain, I have come to prove I am real for a start and then that I am very concerned about what I am hearing with the calls they are making given that no visits can take place – I ask them what they expect of someone who is lonely having placed their partner of 50 years into a home, who is having to isolate themselves…just what good do they think will come from them making a call saying hubby has been involved in an incident? What do they think that will do to a person emotionally and mentally??……

I explain the job for our charity is to support both carer and person living with dementia and that right now we are providing support to the carer at home. I explain that their actions at the moment are causing real distress but this can be sorted if we at Sage House handle any incident reporting relating to the person and then relay this to his wife so we can provide emotional support at the same time – they get it and they jump at the chance, even asking if we can work with some of their other resident’s carers which I explain we can. 

Doing this will mean that not only will we get all information, logged with the detail needed accurately and timely, but it will ensure some accountability for our customer and we can help her work through her emotions and download them too. 

Dropped by Sainsburys on my way through to pick up a few bits for our customer so she knows she matters, and importantly has visual reminders after I have gone, that we care and are here.  Flowers, magazines, hot cross buns, biscuits, camomile tea, some scented candles, a journal (it’s helping me at the moment so worth a try!) and a daily scheduler – all we are hearing about at the moment is keeping structure in your day from central Government and the “experts”…..Yes well you try that when you are grieving the loss of your loved one to a nursing home after a 50 year marriage or are full time caring for someone living with dementia who doesn’t understand why they can’t go out when that’s all they want to do… okay, we can but try….calm down Sally you are getting in a rant now…….

So, customer is pleased to see me bless her.  We both look at each other and know that we both need a hug, but we don’t – we just hold out our arms and pretend we are instead.  She makes me tea and we chat, she cries, at various points and I listen and all I can offer is words.  I support her by offering the knowledge that I have and more than anything I reassure her that she is doing so very good. That she’s doing the absolute best for her husband and that he is okay…she has to stay strong and try and keep in mind that this will pass.  She says she feels better knowing we are helping her, supporting her – she feels stronger because the charity are here.

I go home and I feel low – lots of things I recognise from our customers current experience that I can relate to from personal experience with my lovely grandad, which I then feel guilty about as actually at least I could go to see him, this isn’t the same at all.  Keep reminding myself of professional boundaries and trying to distance emotions – harder at the moment.  I have a long chat with SMT via Teams and I offload to them….thank god for them and the support they are giving me at the moment. 

The team have been really hard at it too…..Jane and Reece both busy today covering phone calls out to all of our Day Breaks customers – some they sit and chat to for half an hour or so, just so that the carer can get a bit of downtime whilst their loved one is occupied with the team on the telephone.

Jacquie and Aimee are also super busy with maintaining the call lists to other customers as well as taking calls from people previously unknown to us.  It’s interesting that we seem to have had a few calls now from people living abroad worried about local family members and seeing if we can support.  They’ve clearly found us online and we’ve been able to sign people up to the free befriending service and sort some more practical things like food deliveries.  Andy our office manager has even been out picking up shopping for people now and delivering it personally as there is no help available near where he is – poor chap has only been with us for three weeks and I know that shopping was not in the job description I signed off for him when he started in post!  According to the customer he is “an absolute superstar!!”

Had some lovely emails today, some from supporters saying they have seen us on the news and wishing us well – it’s such a nice feeling knowing people are thinking about the charity.  I’m a bit sad as I’ve received some internal feedback, not criticism, saying it doesn’t show our response to the crisis…in honesty I’d normally brush this aside but I’m overly sensitive at the moment and when you are working so hard and running a bit on empty these small things hit. 

Some team members have been checking in today and updating on how busy they are keeping – everyone is coming up with ideas about what can be done, how they can contribute and encouraging one another – we need to make sure all of the team keep connected at this time – in some ways it feels like this could actually bring people together as we are all sharing probably more so than ever as our individual worlds become smaller and more contained away from the outside world.  I miss them all!

Isla is busy coordinating the responses and volunteer resources available for befriending – that might become a job in itself as the service and the volunteer base grows – it’s one to keep an eye on and remember if anyone starts mentioning furloughing which I’m recommending to board we don’t do currently.  She’s also sorted the call log and briefing paper for volunteers, so they have some good solid guidance.

Befriending leaflet and extended Wayfinder service leaflets have been sent to print, 1000 of them to start with, need to think about best form of distribution for those – how to get them out to those who will need us most.

Sudden thought about the activity packs – we need to send coloured pencils with them for the mindful colouring some people won’t have any – I’ve ordered 150 packs – we are doing 300 packs so can split them out if necessary.

Giant Easter Egg raffle which was really popular last year is now sorted online – good work by the fundraising team to find a different way to still do it.  Links going up on social to get people interested in buying a virtual ticket [at this point we have raised an amazing £145!!].

George the Sage House cartoon cat has been created now – will hopefully provide some light relief for both the team coming up with scenarios that George will get up to alone in Sage House over the next few weeks as well as those who follow him on Social Media – must remind Luke we need to have a hashtag for him so people can follow him easier….

I’ve agreed that we will stay open over the bank holiday and operate our normal hours – the team want to do it which just about sums them up – how lucky am I? People willing to give their time because they know how important this all is at the moment.

In the evening I find myself somewhat frustrated, we are three weeks in and I’ve still had no direction from statutory services although I’ve just had some email correspondence from those who I know in my previous life to say that CDC and Arun District are now “starting to develop their support/response teams”. I know that local authorities aren’t known for their agility which is why I left after 24 years of working in one, but given they are the ones who permanently talk about the importance of business continuity plans etc the turnaround on this is shocking.  I feel bad for saying it as I know how helpless the officers themselves will be feeling, but more needs to happen faster and they should be leading so that people don’t start falling over themselves and duplicating response plans – note to self we fill gaps Sally….watch what others are doing – do not duplicate….

Early night I’m SOOOOOO tired!

 

Tuesday 31st March

OMG I slept so well! Proper proper good – 10 hours and I feel magic for it!! I literally feel like a Duracell bunny this morning and the day starts with an email from Martha as the Cathedral have been in touch and are running a youth programme to produce postcards which they’d like us to send out weekly to our vulnerable customers! Fantastic idea and of course we agree – lovely way to ensure that people know they haven’t been forgotten about!

First befriending contact today – a lady living alone following a recent diagnosis of dementia – no family living close by and of course now isolating….instantly we know we need to offer more than befriending. She needs more support than a daily/weekly phone call to talk about the world or her knitting, so she also gets referred on to the Wayfinders to sort out lots of things like benefits, how to stay safe in the current environment and practical support like getting her shopping in for her.  I wonder if this will be how these referrals start? We know in wayfinding that you scratch the surface with a question and a whole raft of other issues come out, so we need to ensure that any volunteers know the signs to look out for and send to the Wayfinders for more intense support.

We had a lovely article in the Chichester Chamber of Commerce e-newsletter following the event that Dianne hosted at Sage only 3 weeks ago to the day – how on earth is that possible? It feels like a million years ago…..it feels blurry and hazy.  I don’t want to keep using the word surreal but I can’t think of another to better describe.

George the cat is launched! and his first piece is around when he was gifted to Sage by George Ide solicitors – the cartoonist has done a fab job of redrawing the photo.

We are starting to populate the list of customers to receive one of the 300 activity packs when then arrive – Andy’s on it – he loves a spreadsheet! 

We called an extraordinary Board of Trustee Meeting via conference call today.  Sorry trustees if you read this but I wasn’t relishing the idea, largely as I have a constant feeling of unpreparedness these days.  I am used to going into Board meetings with answers and solutions.  My job is to help define the charity strategy with them, get it agreed and then translate it into actions but there’s absolutely no strategy for this.  I don’t give them enough credit because actually and bless them, they do the best thing that they can for me right now.  They essentially say, “do what needs to be done, we are a people organisation, and this is a crisis involving people”.  They say they trust me and our brilliant team to respond and importantly they tell me that they are here to support me….I am relieved and more than anything I feel a little more in control knowing that we’ve got it right so far since this started.

Opened the post and we’ve received a cheque for £1k from a trust that we applied to which cheers me further and instils confidence that we can weather this – we need to for our customers and our most vulnerable in the community.

I send out my first blog to the team, in the hope it provides some insight as to how everything in the organisation is “hanging together” at the moment as well as the trustees and I’ve had some amazing feedback. If nothing more its showing the enormity of how we are responding to our customers and the current situation and someone even said they feel a little less alone knowing how I was feeling – I can’t ask for more than that to inspire me to carry on sharing it, even if it makes me look a little more vulnerable myself in my CEO role….none of that really matters right now.

So, I ask Dianne to help with formulating a list of the parish councils so that we can write to them asking if they’d be interested in an activity pack for their lonely, isolated older parishioners.  I’ve increased the order to 300 but my customer list of those wanting backs is only about 100 so I want to make sure nothing goes to waste….As usual she’s turned it around super-fast and has written out to 10 of them by the close of the day to test the water.  We agree to target our most local ones to begin with as we will use it as an avenue to push out the befriending leaflets – making sure we target those who will benefit most from the service.  Will be interesting to see if we get any feedback at all during these weird times.

Following the postponement of the “Evening with Graeme Souness” fundraising event which should have happened last weekend, we’ve had to take the decision to cancel – who knows when we might be able to reschedule – so many fundraising events are now cancelled for the same reason.  It’s not simply a case of just cancelling either – there’s hours of work for the poor team in refunding individuals their ticket money and coupled with the fact that a lot of their plans and work have been completely lost now.  They are really busy finding other ways in which to bring in the money as different platforms and software solutions are popping up – trying to keep up with them is madness and trying to get a general sense of how fundraising for charities will play out in the next few months anywhere.  As ever the team are onto it though and I know that there will be plans afoot before the week is out.

There is still the three of us going to Sage each day – we actually need it for the broadband and tech, as much as anything given the amount of films we are splicing (new word for me – probably used incorrectly!!) and social media and website content we are pushing out, to help make this time a little more bearable for customers to help fill their time and remind them that we are still here for them and this will pass.

I am worrying about the team feeling disparate – it’s not about the work or a control thing as I know they are all working harder than ever in these circumstances, but I’m worried as I want everyone to be okay and to know that they are contributing to everything that is happening.  They are still making a difference but in a different way to before and I want them to appreciate that what we are ALL doing now is going to make us stronger as a team and charity at the end of this nightmare.

I feel tired, and its really hard living alone at this time.  Working frontline when its part of your DNA is great in terms of personal reward – knowing you’ve made a difference, you’ve helped.  The solitude however of home life, when the world feels very sad, means you want to be held and have a cuddle (n.b. I wrote in my journal not to include that bit but it feels relevant right now – will probably regret it..). I can only reflect that if I’m lonely even though I’m seeing people during the day, how on earth are older people who live alone feeling at this moment?  I go to bed this playing on my mind.

 

Wednesday 1st April

Not a great night’s sleep but I don’t really know what I expect these days!  The days are merging into one another and its hard to determine what day it is – I check in with others who tell me that they too are feeling the same so I’m not going to worry about it!

However, what I am worried about is that everything feels like it is starting to normalise a little – routine is starting to surface – regular daily online meetings with SMT where we are focussed and churn ideas and update each other on where we are all at.  I don’t want this time to ever feel normal….this time will pass and whilst I appreciate nothing will be the same again I do not want this sad time to be the marker of future life but I fear that it will.

I had a “virtual” meeting with the CEO of Carers Support West Sussex – we talked through our concerns for how together we can support carers in the future who will have some very different needs to what we have ever dealt with before.  We both identified some scenarios that are troubling us as this all continues….we discussed the emotional support that will be needed especially relating to those who pass in care homes (not necessarily to Covid) during this time where loved ones haven’t been able to be present or visit over recent weeks and in honesty I feel a little defeated.  I know that there is nothing that can be done to ever make it right but also, I know we, as the “professionals” need to find a way to respond and help those who will be so very vulnerable.  We agree to pull together a small task and finish group in two weeks and work together going forwards to make sure we can support the people who will be affected by this disgusting atrocity  – god only knows how we will at the moment but we will find a way.

I reached out to some other local charities today to let them know we are here if they get overwhelmed in what they are doing – some instant responses. 

We have signed off the final version of the activity packs for print run tomorrow – they have completely spiralled from a few pages to over 100 pages of things that will hopefully provide some rays of sunshine to our customers and carers – also some useful tips on how to keep busy.

Langmeads Farm contacted us today – they want to offer even more support and are running a sweepstake where the proceeds will come to us – they’ve based it around guess the date that they will re-open!

Befriending service processes from end to end now sorted – well done team!! I just need to define the qualitative assessment and measures, so we can measure the impact we have ……but that’s easy enough sorted and my bread and butter after all.

Isla “attended” the webinar I was invited to today all about Cybercrime – my goodness it’s hard to believe that even in these times people are using it as an opportunity to scam and take advantage as more people are working from home and the online traffic has increased so much.  Another policy and piece of work which we need to do to safeguard the charity and our systems which we could really do without!

We all pretty much finished earlier today – we agreed we need time to do normal things! I was home by 4 o’clock still answering emails and calls etc but at least I managed to do a load of washing, hang it up and dust my house – that definitely made me feel better!  One reflection with regard to emails – those sent prior to lockdown can pretty much all be deleted from my inbox – there is little within them of any consequence in what the world has now become – it’s like the whole world has completely reset which I really do not know how to feel about.

Tonight, following a telephone call, I’m worried again about a few of our customers, especially those with Alzheimer’s who like to go walkabout (we don’t use the phrase wandering – there is purpose when people head out).  Those with carer’s are struggling to keep them inside and tensions are rising and we’ve some who live alone who we are ringing frequently during the day to talk to them and ‘remind’ them they need to stay inside.  The fact that we are in lockdown is incomprehensible to these lovely people and the whole situation is made so much worse by the continual news reporting and as carers stress increases during these times.  To be honest, even the action we are taking to help ensure their physical safety by asking them to stay in is actually causing stress and fearfulness.  This then leads to the brain naturally wanting to take flight and then the whole cycle repeats.  The boredom will increase over the weeks which will only seek to make the need to walk and get out even stronger – what can we do? Perhaps I can see if I can find some greenspace that we can use for our customers, but how can we do that safely?  I will park it for this evening – another one for the SMT list of things to consider.

 

Thursday 2nd April

Slept again!! This is helping.  I am also getting daily exercise as the team and I socially distance and trundle around Tangmere airfield – seemingly we look rather humorous and one woman even asked if she could take a photo so I did too!

Opened the post to another anonymous CAF cheque for £250….wow! I’m bowled over – thank you whoever you are.

Lots of discussions today with Health about how the charity can support them over the coming weeks.  It includes the use of Sage House and I can’t go into detail on the blog at this stage but it’s potentially something very tangible that we can do which directly will impact the local community in a positive way during this whole nightmare.  It’s probably taken up about 30-40% of my day in discussions with SMT about how it can work in practice, the logistics and then on the phone to different health teams.  I also Whatsapp the services committee – another new bit of technology in use to communicate with trustees.  Sorry I can’t give you more on this at the moment, but I promise to update people as soon as I can.

The other big news from today is the incredible response that Dianne has had from the Parish Councils over the activity packs…..between them (so far) they want over 700! WHAT?  So, I’ve had to go crawling to my sis who was generously providing them including the artwork.  We’ve gone from me pushing my luck with a short 20 page activity pack for 50 customers which increased to 300 copies at the beginning of the week to now, wait for it, 1000 packs that are 115 pages long plus 300 other smaller activity books which are slightly more complex….and a whole bunch of leaflets and inserts for colouring pencils into the bargain…..

Some more “normal” type activities for me today too – I don’t like using that word at the moment but essentially it is true.  I’m sorting agendas for committee meetings, talking to my chairman lots about structures and fundraising and things that generally form a place in my “normal” everyday work…feels like everyone is almost getting into a groove across the organisation to a degree and I feel a little more in control as the days go on.  I can only wish that the same could be said for our customers which of course it can’t so then I feel guilty and cross all over again.

Covid = Complete helter-skelter of mixed emotions none of which are positive…My personal mindset however is strong – we can help and we will. This will pass.

 

Friday 3rd April

Packs have arrived!!! They are fantastic and I’m so, so pleased.  Luke has made a great video of them getting made up which will go out on Social Media next week.  He’s seriously generated so much content in the last week it’s pretty remarkable – posts galore reminding people that DS is here to help and support throughout.

Services committee this morning – the first committee by zoom went ok – nice to see all the faces rather than just on the telephone and interesting watching people use video conferencing for the first time – not sure all will take to it and I keep forgetting to turn on my microphone which means repeating myself time and time again! Another skill to master!

Dianne’s brother Robbie decided he was going to shave off his beard and get sponsored to do it for us – it is a serious beard and I think he’s hoping by the end of lockdown it will have regrown.  People clearly didn’t like the beard or they really like Robbie as he set out to raise £100 but so far he’s up to £901!! He facebook lived himself shaving it off – how amazing are some people??

We ordered pizza into the office for lunch and then we had another Friday Musical Matinee with Matt and Martha.  I haven’t laughed so much for such a long time.  The team dialled in as backing vocalists – it’s so lovely seeing people’s faces……Reece and I did a fantastic routine to an Elvis number over Microsoft Teams and Isla had to get up as she was laughing so much.  We had seven people dial in on zoom and we facebook live’d the whole thing – it’s had 345 views as I write this with so many comments and likes throughout.

It was an okay day today – at times I laughed and hard.  A great way to end the week. I feel my mood shifting somewhat – my journal is more positive as the days go on…..is that okay is the only question I ask?

 

 

Sally Tabbner

07/04/2020

Sally Tabbner’s Covid-19 Weekly Diary – 1

Dementia Support's Chief Executive Sally Tabbner

Reflecting on the Week………

The tiredness and mental exhaustion during this time is phenomenal.  My mind, like most others I am sure, has moved quickly from one scenario to another, from worrying about one person to another, so quickly that it’s really not getting time to debrief fully and download emotions – given what I do, I know this is not good so that’s my goal for next week to output my feelings!  Everything feels just a bit foggy and surreal currently and my short-term memory is even more shocking than normal!

Everyone is pretty much working from home now, since we sent them on Tuesday, that is apart from a core of three of us who are dealing with the reactive side of the business with communications, messaging and “urgent need” responses.  The whole team, although spread out across the County are really holding it together though and running the ongoing business and importantly looking after our customers “virtually”.  We’ve some who are self-isolating due to personal situations, but everyone is busy doing something which contributes to the current debacle of life or the long-term future of our charity for when this whole mess is over.

How can it even be true that on 10th March I was walking around saying to everyone we are business as usual? That’s only 2 ½ weeks ago?

It’s only been a week since shutting down our much-loved Day Breaks service, but it feels like so much longer.  It’s been a blur of little and interrupted sleep, early morning starts, communicating as much as possible with the people who matter – our customers and their families, and desperately trying to do what we can to ensure that our amazing staff team are as well and supported as they can be in these worrying times.   

It feels like I am running around and reacting, working off the hoof most of the time, which is hard for someone like me who is generally proactive and strategic in their approach.  I am trying to keep positive and to ensure we are sending messages of love and friendship to our supporters, to help as much as we can at this time and more than anything to demonstrate our can do attitude and to reinforce that this will pass

The team are doing amazingly – so creative with ideas about how we can support our customers during this time and the technology we invested in is holding up – in fact, I’d go as far as to say, its brilliant – so well done Chalkwood IT for that!

My week has been consumed by working at lightning speed with the management team to come up with new services and ways in which we can support our customers as best we can during this difficult time.  Together everyone in the charity has managed to pull some truly remarkable things out of the bag which will really make a difference to people living with dementia locally – which is afterall what we are all about.   

So, I have opened up my journal a little to you – it captures my week as it happened! Warts and all! (Some stuff removed to protect the CEO though!!)

 

Friday 20th March 2020

We took the decision to close day breaks in order to do the most caring and responsible thing for our customers physical health – this hurt more than anything I have ever done professionally.  It ended for our customers on a high with a great show by Dawn Gracie [incidentally this is still being watched and has had over 7,500 views on our facebook page as at today].

Today we laughed, we sang and danced, and we waved goodbye to our lovely customers and their carers – it’s fair to say all of us at the charity feel completely defeated and a bit empty now.  I sobbed in my office this afternoon, worried about how our poor carers were going to cope, knowing that we  have been their lifeline – the only thing that enables them to get out or do “normal” things like cleaning and shopping. Some are without families – what will they do?

I think I saw a tear in every staff member’s eye today, some fell apart knowing how tough the coming weeks will be for some of the most precious and vulnerable people that we know and actually really like. 

The feeling of guilt is quite immense – being the ultimate decision maker means feeling responsible for cutting off a service that has become another’s lifeline even though you have qualified the reason for your decision with yourself it hurts…..badly.  I know it isn’t my fault though.

I’m gutted……I have no words.

 

Monday 23rd March 2020

We are all a bit stunned still and today kicked off with us, having generated call lists of all of our vulnerable customers and determining who needed what, frequency of call, getting into flow – processes and data capture being developed as we went and with such a great team effort to ensure that customers were prioritised and felt loved. 

Everyone is really doing their bit…and more.

I have never witnessed new systems being developed so quickly and effectively and I feel really proud of my team.

 

Tuesday 24th March 2020

The guidance from central Government shifted again today to one of everyone should self-isolate if at all possible, so we told the team to go home. Luckily, we’d already worked up what each team members priorities would be if they had to homework.  We discussed the work plans, made sure the tech was working and that importantly the phones could still be answered to support our customers. 

The team also made up amazing personalised packs and boxes and delivered them out to our customers to help to relieve some of the stress and boredom that we know isolation will bring including talking books with their voices recorded on them.

 

We also started to get together a resource pack idea – a printed book that we can send out to customers – all the team set to it and added content on things around exercising, wordsearches, singing, mindful colouring, and reminiscence exercises – just simple things that people can do at home to make life a little more bearable. Shelley is going to design artwork and print it bless her.

We contacted all volunteers to see how they are and to report on what we are up to – they are part of our Sage House family and we need to keep them in our thoughts.

An electronic donor update went out today too with how we are responding to the current situation.

Worse part today for me – witnessed Sage House being officially mothballed – closed down, empty. Cried again! It’s actually making me feel sick – I worked so hard to get it right. It was right, it was doing good and helping people which is all I wanted to do and now that’s gone…..my head is saying it will come back but my heart hurts.

 

Wednesday 25th March 2020

Today saw a swathe of energy bubble in the team and creativity start to flow as to how can we deliver even more for all of our local vulnerable people who now have no choice but to isolate – not just the boredom but trying to cope with some challenging behaviours in the most heinous of times.  We’ve always been about improving the quality of life for people living with dementia and the team are well versed in how to do that normally but, not being hands on now, means we are trying to think differently at a time when people need us more than ever …..

Today we decided to extend the times for telephone calls/wayfinding service.  This means we are now open to calls from 7am (for our early birds!!) and staying open until 7pm. We are also now operating the phones Sat & Sun 10am-2pm.

We also worked up and prepared all of the processes to launch a new telephone befriending service on Monday 30th. We are already receiving telephone calls from people who are simply lonely – heart breaking considering how long this will go on for – I really don’t want people to get used to the concept of being alone…. 

We are in the midst of contacting our volunteers to see if they will help with the befriending service and we need to carefully match demand to resource so we are going to gently launch the service over the coming week starting with leaflets and posters in our local community Boxgrove and Tangmere.  The Parish councils are involved and will get the message out to their single households.  Great moment today was chatting to Martha through her window when dropping off leaflets…..I’m missing people and my team.

We also set up a “Zoom” account which enables people to conference essentially and hope to launch it next week as a virtual chatter table – we are just working out which volunteers might be able to help facilitate the discussions.

We received a lovely cheque for £4k today – a trust application that really we had little confidence around which helped my mood a little!

Today we also compiled a list of everyone delivering food etc across our patch which will be in the resource pack but tonight when I’ve talked to them Adult Social care are reporting lack of shopping services in Chichester and Petworth for vulnerable people as families isolating as they have “at risk” members within but meaning they cant help vulnerable parents…..

I need to park that for tonight and have it as tomorrows discussion with SMT and let my head rest a bit…..need to target our resources in the best possible way – keep vulnerable people as our focus – it’s what we do, it’s what drives me…..

 

Thursday 26th March 2020

Today it’s really started to bite.

We received our first crisis call from Rapid Access Team in Social Care.  There is now only one criteria at the moment for hospital discharge as of yesterday morning where new guidance came out from DoH.  The simple question asked is “is it safe for person to go home” not the myriad of criteria and assessments for this service or that…..I’m so upset as I think if you ask that of most older people, their pride will pretty much always say yes, especially in the current environment…….how can this work?

Our case related to “G” who was discharged from hospital to his flat in central Bognor……83-year-old man who’d had a stroke, has cancer of the brain and struggles to communicate.  His first care call this afternoon revealed he has no kettle, toaster, fridge, white goods, towels, toiletries, money or food or drinks – literally all he had was half a loaf of bread and a banana as well as his bed with some bedding on it – seriously how can this be in today’s world??? 

Stonepillow is closed who’d normally get involved in this type of thing……..but together the team organised a fridge, toaster, kettle, microwave, towels, some food items from Sage, toiletries to be going along with (even toilet rolls!!), puzzles, colouring books & pencils, jigsaws and lots of other bits and pieces.  Social Care team collected them half an hour later from the request coming in and delivered them directly to him.  We also arranged for him to have a daily hot meal delivered to him free of charge for the next week and a grocery shop to be delivered again free. The adrenalin was pretty intense at the time and it took ages to calm – I must remember to buy a new kettle for the staff room….

 

We also received a call from an ex offender we began supporting last year by telephone, visiting Sage and engaging with the prison welfare team – he’s been released and living out of the county now – he got a job as soon as he was released but this job has now ceased, he was selling the Big Issue and loving it..bless him.  He called this morning, living alone, anxious, never plugged into benefits or Social Services or networks where he lives, because he started working as soon as he got home.  Wayfinders are flipping amazing – they have spoken with probation service (in Bournemouth) who were so pleased to get the call because they cannot help this chap but aware he is vulnerable.  When asked if we would be stepping on toes or repeating what is being done his end all they could say was “you won’t be and yes please if you could help “J” because we cannot”.  Wayfinders have spoken with DWP about getting a claim sorted for Attendance Allowance or Universal Credit and with Bournemouth Social Services.  The chap of course doesn’t have wifi and the library is closed and he has literacy challenges plus he has never used any online service before – I’m frustrated who would help him if we didn’t?  We have spoken to a local church near to him and asked what he needs to bring to access the food bank – a benefits letter which he doesn’t have as he was working!!!!!! HOWEVER the man at the Church has said he will arrange to get him a food parcel together.   This is 2020…it isn’t right??

In terms of the more strategic bits, all of the processes relating to the Telephone Befriending service got worked up today and the leaflets finalised.

We released a press release regarding the anonymous £10k and my open letter last week [incidentally as at now it’s had 3,063 views on Linked in and 3,934 views on Facebook – it was actually trending on Linked in under #thankyou – who’d have thought I could do that – not me and still not sure how, LOL!]

We drew some rainbows as Tangmere is putting them in windows so people taking their daily exercise can look out for them and we put it on Social Media.  Our second Sage Communities Weekly newsletter was also put together this PM – Luke did it in the end – I kept putting it off!

Finally, in-keeping with our previous Precious Moments campaign we launched the Precious Moments Jar of Joy on Social Media which seems to have been shared a lot and well received! I saw something similar on Social Media at about 4 in the morning and thought it was a good fit!

I’m home tonight late and just as people are clapping – not for me, but for those amazing staff in the NHS who I cannot even imagine the horrors of which they are facing on a daily basis and I clapped to for them too and then I selfishly decided that I would also clap for my team and me actually – we deserve it – we are frontline and we are helping and contributing right now.

 

Friday 27th March 2020

As the week progresses, I can feel myself getting more bullet pointy! I am not sure if its tiredness or what it is…

We started the day on social by acknowledging the 8pm NHS hand clap last night and then in the afternoon we were contacted by the BBC who have picked up on my open letter last week re the £10k….they are coming to film on Sunday at Sage with me.  I spent quite a long time talking to Bob Everett on the phone – very odd talking to a voice you know very well but not personally!

We did a live link to Matt’s Musical Matinees in the afternoon with Martha – a lot of fun – they are hilarious together. We facebook lived it and two people joined via zoom too and a lot of the team were on Microsoft Teams in the background throughout…..so great to see them altogether albeit on a TV screen – I miss them!

964 people reached as I write this! And 757 people have viewed the performance so far and we know many were nursing homes so covering more than one person!  We’ve also filmed extra content for the coming weeks.

The graphic design of the resource packs is in full flow. We will sign these off on Monday eve so we can get out delivering Wednesday next week – I’m looking forward to this. My sis has worked so hard on them with us and I really think that they are going to make a difference to people.

One of our Day Breaks carers contacted us desperate for support with their shopping as unable to get out and no family to support – luckily Andy lives pretty close by and has arranged an online order for them which he is collecting and delivering it to them – the gratitude from the customer is immense….he wouldn’t have been able to sort this without us as no family and doesn’t want to keep asking his neighbours.

Isla is sending emails out to our volunteers this weekend asking them to confirm when they might be available to talk to people on the phone for befriending – I’m pretty sure a lot will step forward – already have three trustees signed up!

The charity is also getting lots of new volunteers step forward – don’t get carried away Sally……at times like this we have to be careful not to forgo the processes – we need to keep in mind that we are working with vulnerable people who are targets for some so again Isla is checking out all of the detail about turnaround times etc….she’s such a stickler for things like that thank god!

Today we also received our first referral from WSCC re the telephone befriending service – an older gent who has been discharged from hospital and lives alone.  I know as the weeks go on that these phone calls will start to identify further needs that these individuals have and will be the catalyst for further service design as discussions ensue…I hope we can cope and manage…..need to try and keep ahead of the requests.  

With that in mind its important I keep well and focussed AND SLEEP!!!!  I also need to make sure the team download and take time out for them and their families – how can I make sure that happens remotely? Also the burn out thing – we talked about it in our daily SMT today…..how can we make sure all of the team look after ourselves.

The team are still maintaining our daily call lists, but I suspect that time on calls is starting to increase as loneliness sets in – luckily the team have been busy building more systems to ensure they can capture this info.

Next week will see us launching George the Cat’s Sage House Adventures (he’s one of the robotic cats that was sponsored by George Ide solicitors) – it’s a way of bringing one of our donors to the fore at this time, but also something for our customers to follow – we have Daleen onboard, our resident cartoonist, and she is going to draw for us for the foreseeable future – it will provide us with a different approach and keep some of our messaging a bit light hearted.

The fundraising team haven’t stopped either – identifying new platforms and approaches so that we can still raise monies in different ways – even the Giant Easter Eggs will be virtual!

At 11am today we published the story about “G” who we helped sort white goods and other things for yesterday.  [At the time of writing on facebook alone we have had 2147 views, 137 likes and 23 shares]. I have no words for the difference we seem to have made to him according to Social Services feedback – apparently just the pack of digestives we sent alone had a massive impact on his wellbeing… the thankfulness of the Social Work Team too was so positive.

It’s hard to come home to an empty house – the eery silence after another day of hubbub and rushing.  As a single person I am realising that I have not been within 2 metres of anyone in the last fortnight which is just odd! But it helps to capture the day and see what a difference you are helping to have in these very strange times, even if you can’t touch or go near anyone!

Let’s see what next week brings……….

 

Sally Tabbner

28/03/2020

Go with the Flow

talking to someone with Dementia

Communicating with people living with Dementia

We can often take communication for granted, but, this is one of the key areas of difficulty that develops in people living with dementia. In some cases they are not able to express their physical and emotional needs.

Speaking to Aimee Parr, one of our Wayfinders, there are some very easy steps to take to help your cared for or loved one living with dementia:

  1. Body language is very important – face them
  2. Be interested in what they are saying and be patient
  3. Respect their views, make them feel that they are heard

A few examples were mentioned. A lady living in a care home, asked the carer when her children will come and collect her. Instead of telling her that her kids are not coming, and she is in a Care Home, you might just go with the flow and tell her that her children will be coming later and that she is safe with people who love her just where she is.

Another example is one of our elderly gentlemen visiting Sage House believes he is coming to work, and he is the CEO of the company. Instead of telling him, that he is in the Daybreak programme for people living with Dementia, all staff just go with the flow and make him feel valued. Talking to the gentleman about his role may increase his confidence and allow him to feel comfortable and positive while he is in Daybreaks.

Finally

At times we can feel guilty for being dishonest, but for someone living with dementia the storyline or time they find themselves in, is their reality. Telling them, “you have told me that already” or “your Mum passed away a long time ago” can be extremely upsetting and stressful, and, can discourage them from talking altogether. The person with dementia may be wanting the feelings that person once gave them, like protection, safety or love. Asking more about the person they are talking about and what they were like will validate their feelings and hopefully bring back happier times for the person with dementia.

The bottom line is, go with the flow, and you might even find out some interesting facts about your person living with Dementia

Do you have any questions?

If you have any more questions, please contact Sage House, our hub for Dementia Support at info@dementia-support.org.uk and a friendly Wayfinder can give you more advice and reassurance. If you are still unsure, pop in for a tea and cake at our Daisy’s Café, there are always informed staff around.

Citizens Advice and Dementia Support Collaboration

Citizens Advice and Dementia Support Collaboration

Arun & Chichester Citizens Advice are to start delivering a weekly advice service at Sage House, Tangmere, to support people living with Dementia and their carers.

The new service starts on Monday 27th January and will offer booked appointments to help with a range of topics, including blue badges and disability benefit forms and appeals.

Luca Badioli, CEO of Arun & Chichester Citizens Advice says, “we are delighted to be working in partnership with Dementia Support, to deliver advice in an environment where people living with Dementia and their carers, are comfortable. Sage House offers fantastic facilities to the community and by being at the centre, we can support clients who may otherwise not reach us.”

Sally Tabbner CEO of Dementia Support says, “we are excited to work with Arun & Chichester Citizens Advice it’s a great opportunity to be able to support people living with Dementia and their carers with the Knowledge that Citizens Advice brings. Being in partnership with local organisations has always been a core part of our strategy, so we are excited to help this brilliant initiative continue to support people that may otherwise not be able to access services.” 

So, if you or someone you know is living with Dementia and you would like more information or to book an appointment, please call 01243 888691.