Reflecting on the Week………
It’s Saturday morning and I was awake in the night again – internet shopping has become my friend in the last few weeks, as well as very loud, 80’s & 90’s music, which I am very badly and loudly singing along to (not in the middle of the night though – I live in a terraced house!)…..I guess it’s all about distraction at the moment, reminiscence to happier and more carefree times. I feel like everything is at extremes…..one minute caught up in those distractions and then plummeting into the reality of our current world – it’s almost like moderate doesn’t exist anymore?
I might be gauging it wrong – we are all in our own little bubbles and worlds at the moment afterall, but I do feel that there is a little more sadness around in the last few days. With the lockdown confirmed as being at least a further three weeks and knowing that in reality we are only three weeks into it, I feel that for others (certainly more so than myself even) there has been a shift in mood. The downturn in the weather hasn’t helped but it certainly feels that people who I talk to are moving away from panic and bewilderment and toward depression and for some almost hopelessness.
The numbers of Covid positive people grows but steadier than predicted in this part of the world, and still as part of the social care “system” we wait. I’ve spoken to a lot of others in the social care world over the last few weeks who all confirm the same – dates fly around constantly of who has heard what about when it might “hit” but the reality is no one knows – it’s all conjecture which we choose to either buy into or not. Personally, I am working toward 7th May for an end to lockdown. It will be Sage House’s 2nd Birthday on the 8th May since opening and personally I cannot think of a better way to enter into our 3rd Year. I am trying not to become fixated on a timeline though, as I don’t think it will be helpful for me, but I am holding onto my new mantra of this will pass as much as I can – it’s even written on the whiteboard in my office!
I feel like I am definitely talking to more people generally but perhaps that is because you have to make a special effort, it isn’t just a passing hello or unplanned exchange anymore. My role means I need to be talking to my team all of the time but now it means “zooming” or using “teams” to make contact rather than just wandering over to see them…oh for those days soon – I’m a people person so this is challenging.
I’m also in touch with family more, in fact my day started today with a lovely short video from my sister at 7am. It was a thirty second clip of my 1-year old niece playing with the book I bought her for Christmas. It sings the Baby Shark song very loudly at the touch of a button which little Sienna has just learnt to press – so clever! According to my sister this is not acceptable in the small hours of the morning but I cannot help but feel proud 😊.
So it’s been a shorter week due to the Easter break and the fact that I did as I was told by my SMT and took some time out means I have entered into the week refreshed…..
Saturday 11th April
Well I had a lay in! I didn’t get up until about 8am this morning and then I went and sat in my conservatory to type up last week’s blog. I also cover the phones on a Saturday these days – they are not ringing off the hook and currently we only operate from 10am to 2pm, which we’ve introduced since lockdown as we only used to operate during weekdays. That said when the phone rings at 4pm I still answer it – cannot bear to think someone needs to talk and no one answers.
I received a couple of phone calls from one of our customers, Mr P. He lives alone but has carers going in to ensure he takes his medication and has a meal of an evening. It’s so challenging for him as he likes to be out walking. Before all of this, his routine was to visit us at Sage House pretty much each day. He would talk to each member of staff to ensure everyone and everything was as it should be. He felt part of our family having been involved with the charity for a very long time and at times we would all joke that he was actually the one in charge of us. I miss this a lot.
We tend to ring him these days if he hasn’t been in touch by mid-morning, but invariably he rings early, and we chat at least 4 times a day. We tell him that we are keeping safe by staying at home and not going out and reminding him that he needs to do the same – sometimes he listens and accepts, other times we know he will be out within the hour. By the time I speak to him today, he has been out on the bus to Portsmouth and back, but says he didn’t get off. He says the bus driver (at Stage Coach who we work closely with regarding this gentleman) has given him a guided tour of Portsmouth pointing out all of the different historical places along the way – just the two of them on the bus throughout. I know I shouldn’t smile but he sounds really happy as we chat about his trip, how lovely the weather is and I do my best to convince him to stay in for the rest of the day – I know it’s unlikely as he’s fixated on walking by the sea this afternoon. We need to keep him safe, as we worry that soon his carers will potentially stop going in to see him if they feel that the risk is too high with him not self-isolating. This would of course be completely disastrous.Today I also had a lovely chat with Mr B – he told me had read the blog and found it an “uplifting read” 😊. He had managed to get a shopping slot at Waitrose in Chichester and does drive but his wife, who has dementia, has been poorly recently and he’s naturally worried about going out. I can tell he doesn’t want to ask, but it is what we are here for so I insist. The mind does do overtime at the moment, as we talk about scenarios such as what would happen if the car broke down whilst out etc. I tell him to send me the info – I only live a couple of miles from him anyway and can easily get into Chichester – I can do a bit of a shop myself so all in all it works out well. Selfishly I felt useful afterwards, like at least I could help if only in this very small way.
It’s been a hot day again which has been lovely – I managed to get outside to write up some of my blog which took 6 hours! Need to try and cut that down a bit but I’m getting really lovely feedback from people saying it’s a helpful and useful insight I will keep at it!
Late night – a couple of glasses of Merlot but I’m not working tomorrow so why not?
Sunday 12th April & Monday 13th April
I took two whole days off!! I completely zoned out from anything work or Covid-19 related – I did not watch the news and I pretended to myself that all was right in the world. I even took two naps on the Sunday and one on the Monday!
Monday evening and I sit reflecting on how needed the last couple of days have been, just how restorative it has been to do what I have. I reflect that I am lucky in so many ways – actually single life means that I can do what I want when I want – that’s a good thing! I have a lovely family who I have been facetiming and zooming – I’ve seen them – okay online, but I feel reassured and I know that they are safe.
The problem with these reflections is that it then leads to massive pangs of guilt. Largely those who work in Charities such as ours, do it for personal and vocational reasons – in fact I can hand on heart say that all of my team do, and I consider myself included within that. I personally have a need to make a difference to older people (always have) and particularly those living with dementia since I lost both of my grandparents to it. So I feel massively guilty about the rest and relaxation I have had, about napping when I wanted, choosing what I wanted to do and when, for lazing in my garden, using technology to see my family and being spoiled by the life that I have in what are terribly dark times for my customers.
My life is easy. I need to hold onto that for this will pass and then we can get back to building the charity to providing the meaningful and what is so evident right now, vital respite services for our customers. The worry then switches to how will that work? what will it look like? and when? but that’s for another day.
Tuesday 14th April
So, it’s starting to get pretty tricky now and it’s been a day of some real lows.
The residential and nursing homes are starting to be hit hard and we know we have customers who have had to go in because we have closed our services – this is such a sickening feeling and I can barely bring myself to think about it. My team are doing everything within their power to support our carers through this. One such local home, where one of our customers is residing, now has a confirmed case of Covid-19 and they have been on lockdown since the 23rd March. The reality is that it can only be one of the staff who brought it in and therefore the risk of it having spread to others is huge. Our carer is at her wits end. She only put him in the home during this period as she felt it would be less risky – with his complex needs he needs specialist support and the carer was concerned that as home care agencies often use temporary and agency staff plus swap shifts around a lot, that her loved one would be exposed to less people in a residential home – that he would be safer – especially given it was locked down. She did her due diligence and agonised over this decision.
She went from full time carer to someone who couldn’t even visit her loved one and now finds herself in this situation?? She knows that if he does contract Covid-19 its highly unlikely that they will convey him to hospital for treatment – they aren’t from care homes and worse still if he were to pass, she won’t be there. He was supposed to be safe – she sacrificed spending time with him to make him so and actually I cannot fathom any of this.
I also know it’s incredibly selfish as this isn’t about me at all, but I feel immensely guilty. I cried in the office ….Dianne and Luke help what could easily become me catastrophising as I start down the road of thinking I was ultimately responsible for that decision to close us – I know I had to but still it’s my name at the bottom of that piece of paper who gave the directive….they reassure me its not my fault. I am angry at myself for letting myself get upset – I have no right.
I’ve been told one of the local homes is reporting 12 deaths from Covid-19 and they’ve apparently got another 20 confirmed cases. Many homes are no longer accepting new admissions so quite what will happen when the hit comes I don’t know – I’ve heard that there is little or no rehab taking place instead people are being admitted to homes but no physios/OTs are able to enter because of lockdown. Some of these are young people who might have had a stroke or injury and been only a matter of a couple of weeks maybe even days were completely mobile and living independent “normal” lives. They need help to recover and rehabilitate which they now won’t get and the importance of early rehab is essential to recovery. The reach of this whole debacle continues to expand.
Last week we’d got so excited to have set up a bank account and benefits for our ex-offender who has a dementia…..but a “glitch” has manifested. The bank need a photo of him at the branch despite us knowing him and being able to vouch for him and describe fully – absolutely no flexibility – all we hear is these are “unprecented” times – if that’s the case why can’t these big beasts of organisations take some “unprecented” flipping action in order to make life a little easier for very vulnerable people? Unbelievably the only person able to help with getting the photo sorted was his daughter. She is an NHS Trauma Nurse on a Covid-19 ward!!! She had to drive miles, clearly stressed with what she is currently dealing with in her life, get fully gowned and masked up – to take a photo of her father which probably won’t even be looked at. She is fuming – I am fuming for her and don’t get our Wayfinders started….
Some good news today, Alight Media (digital billboard company with various nationwide sites), who were introduced to the charity via a new trustee have set up running a campaign for us around loneliness – they are generously working with us and we are taking advantage of some of their underutilised space currently. Amazing to think people in Scotland and London will be able to see our logo!
I am tired from crying, but I am essentially a bit numb this evening to some emotions – perhaps because I felt so good yesterday but I will see what tomorrow holds and hang onto the fact that this will pass………………….it has to.
Wednesday 15th April
This morning started with someone contacting us from Pakistan! Our social media presence has grown hugely in the last 4 weeks or so and we have been encouraging people to get in touch if they would like an activity pack to relieve the boredom. A lovely lady who is looking after her mother who is living with dementia found us via Instagram and asked for a pack – she was also desperate for advice and help. We are currently exchanging emails with her with some advice that she can use to help her family and she has downloaded one of our resource packs!
We had two collections of activity packs today one from a nursing home where one of our customers is, so knowing he’s going to get a pack is really lovely and that he will be reminded of us even if just subliminally is a really great thing to know.
I managed to catch up on quite a lot of my emails today and do some very basic things that have fallen by the wayside recently and which, in honesty, I am struggling to be interested or concerned with. They are however things which are important from a good governance perspective and now is not the right time to let that slip. I send out some minutes of meetings and get some board and committee meetings set up ready for the next couple of weeks plus manage to get through some correspondence that is woefully out of date but I hope everyone will understand. Then I opened the post……..
A customer had sent in a copy of a letter they had received from their local GP surgery which was dated the 31 March and I am completely mortified. Basically, the letter says that they are receiving this letter because they have a diagnosis of a type of dementia and that dementia is a condition that naturally increases your frailty level due to the deterioration of your cognition. It states they are more vulnerable with regards to the Covid-19 virus. The GP letter then says that they appreciate that the patient might be fairly well and active at the moment and that the letter might come as a shock. It says they don’t want to alarm or upset anyone but they’re taking the opportunity to prepare themselves and ultimately prepare the patient. It states that as the Covid-19 pandemic continues to worsen (remember dated 31/03/2020) it’s important to plan well for your future care by getting a good understanding of your wishes which will help your family members carers or clinicians to give the care wanted and where you want it. Okay so there’s some scary stuff in this considering the date……………
………….HOWEVER, the letter then sets out some background and explains how COVID-19 often presents and the treatment that might be required i.e. with a ventilator. It explains that currently hospitals are coping with the demand upon intensive care beds but that is likely to change as there will be an increasing numbers of deaths, admissions and confirmed cases……the worrying thing for me is that it then states that for the majority of patients with dementia conveyance to hospital in the event of Covid-19 viral pneumonia will not be appropriate as the body is unlikely to respond to treatment and therefore it’s more appropriate for patients to be kept in a place of residence where they can be kept comfortable and looked after around familiar surroundings and by people who know them. It talks about CPR for patients being virtually zero and then it asks the receiver of the letter to consider whether they want life prolonging treatment and whether they want to go into hospital??? After that??? Attached to the letter is an advanced decision’s form for completion!! Made more incomprehensible by the fact that two witnesses are required for the document. In this day and age are we really guilting people into euthanasia by suggesting “you are going to die anyway so don’t bother taking up resources?”
Martha is onto this with the CCG – I’m nauseated and need to understand how on earth anyone thought it would be okay to send this out to another person – I mean what on earth? What is the scale – is this just one surgery, are there more? People locked down unable to go see the sender or even speak to them at the moment – how can you be expected to make any such decision under these circumstances? N.B. I thought long and hard about whether to include this in the blog as I appreciate it will be an upsetting read for some, but these are the issues our Wayfinding Team are trying to support people with – these are the decisions our customers are feeling pressured into making
We are still at distancing plodding around the Tangmere airfield most days to try and get some fresh air – it’s not enough to help me sleep. I am averaging 4-5 hours and I have always been a 10 hour a night person…I suspect tonight will be a rubbish one again
Thursday 16th April
VERY small things bring relief at the moment such as discovering that you can change your backdrop on teams. Seriously “well done Microsoft”, that gave me a little excitement first thing this morning. I completely appreciate how shallow that likely sounds but seeing Lisa on a beach surrounded by palm trees in our fundraising catch up made me feel a little less blue, if only momentarily.
Virgin have just announced that as the marathon cannot now take place that they are launching the “2.6 challenge”. The team in the office have given it a lot of thought as have SMT, so now Lisa and I have lots to discuss so that we can link this to what we are doing and our charity response to it. We have an amazing local community and corporate partners who we are sure will want to get involved and do something. The idea is that people take part in an activity of their choice based around the numbers 2.6 or 26 and raise some money whilst doing it. Ideas include: running around your balcony for 26 minutes; doing 26 press-ups with the dog on your back??; singing 26 songs; being silent for 2.6 hours (perhaps one for the kids?!). By lunchtime Luke has finalised the artwork and uploaded the content to the website – Dianne has organised to get some of her supporters involved and videos with people saying how they are going to support are going out on social media. I am staggered at how quickly my team is working now and turning things around…..seriously staggered.
We are busy trying to keep up with all of the legislation changes around furloughing and HMRC and are approaching our deadline to run payroll for the month – thank goodness we have the support from James Todd to support us through it. It’s a minefield for a little organisation like us and I wonder how even smaller charities are managing with fewer resources than ours.
Dianne and I have a discussion in the office. It’s fair to say we both probably spend too much time shopping online and buying clothes. Whilst completely inconsequential in today’s world, we are moaning at how drab we feel as we have only worn jeans and t shirts for the last 3 weeks, whereas normally we make a little bit of an effort to “look the part”. We decided to stop moaning and sort it out, it’s a problem within our gift to negate, so we agree that tomorrow (Friday – (which has also become Pizza day at Sage House incidentally) we would get smartened up and make an effort! We tell Luke he has to wear a suit and tie too! His face was funny, but I think he will oblige – I’m not sure he even wore a tie to his interview only 7 months ago!
A high today is that we have just added up the number of packs that we have sent out to vulnerable older people in our local community and it totals 812!! We are all shocked and amazed and are getting some amazing feedback.
The low…..I am feeling fearful….the latest statistics were released this afternoon from the ONS (Office for National Statistics) relating to Corona virus related deaths in March and it is grim, worrying reading. It’s been reported by the BBC News and basically shows that 9/10 people who have died from Covid-19 are people who have pre-existing health conditions, which you would probably anticipate given the reporting. Sadly however dementia and Alzheimer’s disease was the highest condition that females over the age of 70 had as well as coronavirus in March. The older males over 70 is also a very high figure, although does fall behind those who are living with Ischaemic Heart disease. That’s for March. It terrifies me about what is going to be reflected in these statistics for April, especially given what we know with regard to care homes and their levels of Covid – I am desperately trying to hang onto the fact that this will pass but in honesty it’s a challenge as I write my journal tonight.
I am definitely missing having the team around me – I guess I am a sharer and my SMT and I all know one another well enough to know when one of us is maybe off kilter a little – including the approach to take, the questions to ask and how to support each other. If this had been at any other time with the ONS stats that came out today, we would have likely sat together and talked them through – we would have reasoned it out and shared how we felt about them – we would probably have felt strong together to discuss the impact that it might have on our own customers, but instead, alone I choose to not let me brain go down that road – I acknowledge the information and then put it away in a box until I feel happy to bring that out again. I’m not going to pretend, I am worried – not for me but for our lovely customers who I can only hope are staying as safe as they can. I need to make sure they all know that we can help them with shopping and prescriptions – they must stay inside and keep safe….need to push the advertising of what we can offer more…..off to bed – I need sleep.
Friday 17th April
Today we’ve done the “dressing up” thing which has invigorated me to a degree – another distraction as we decided to turn it into a fundraising initiative! Distractions are very helpful at the moment. We launched, albeit “organically” as Luke refers to it, Dress-up for Dementia [#d4d].
Essentially, we have introduced the reverse of the dress-down day concept where people give to the charity by texting and then get dressed up for the day for their zoom meetings etc. We’ve invited people to get their teams to dress up smart for their virtual meetings or if people are having a virtual quiz/bingo etc that they get dressed up to participate and support the charity at the same time! (Dianne and I are wearing evening wear next Friday!!) It’s not for everyone of course but it lifted our spirits in the office and my morale.
We had a team zoom chat with 22 of us involved – I know I keep saying it but I do miss them so much. Some were unable to join as they were feeling a bit low and some couldn’t because of the number of cases we have on the go – some new customers to wayfinding and such complex needs but in these times all of the usual things that we might suggest are all irrelevant. Including go outside, get some fresh air; can you get some friends to pop around etc…Also you build trust by meeting with people and demonstrating to them what you can do and face to face is truly best when trying to offer emotional support.
I need to make sure the team are ok and feel supported too with proper clinical supervision too where appropriate – the emotional drain is tough and the offload is important – you cannot carry this stuff around as it festers.
At the zoom meeting everybody had a minute to talk about what they’ve been up to again, some sadness was certainly shared but it’s really lovely that as a team they are coming together [virtually] and feel able to share. They are all actively talking about being lonely; about the challenges of working at home and home schooling their children. I truly believe this will only go to build a more collegiate approach going forwards, which actually was really brought to my attention by an email that I received from one of the team afterwards. They talked about missing Sage House but that they have a feeling as a team we would be stronger at the end of all of this…..so lovely to hear and what I really needed to hear from someone who had no agenda or need to reach out.
The packs have been so very well received – we have a further 100 coming on Monday but will then run out, but we are already working on the second one!! We have so far sent out 912 packs, 50 of which to our current customers.
This means that we have so far reached 862 new people to Sage House, these are all older vulnerable people and this all in just two weeks.
It’s pretty immense and all due to an amazing team effort which started by getting the content together in which the whole team played a part. The design, print, packing and delivery have also been crucial which has involved many volunteers, trustees and family members.
None of that though would have happened without the dedication and tenacity of each of those people and their desire to make a difference at this dark time to the people who need it the most……that is what the Dementia Support team do…..it’s what makes us very special.
Until next week…….
A very very proud CEO