Category Archives: adapting

The end of Virtual cuppas…for now….

For the last 3 weeks, I’ve been holding “Virtual Cuppas with Wendy” twice a week.

 It’s weird, as I love doing them, really do love just meeting people I’ve only known by a Twitter handle or a name that’s floated around on social media, but it’s also become very stressful in an unexpected sort of way…

The first couple were no problem, it was new, a new adventure. A new way to keep connected in this strange world…a different sudoku….

But as time went on the stress began to take hold. Different people began helping me and it’s that inconsistency that also became stressful, not knowing who will be there with me and not knowing who will be joining…having different people…I know that must sound strange…but it began to be overwhelming….

Innovations in Dementia have been wonderful in supporting me and I didn’t expect the same people to be free each week, but I also didn’t expect the inconsistency to affect me in the way it did….making me feel anxious when logging onto a new session…

The stress of not wanting to miss out playmates as ‘guest playmate’ was also on my mind – not wanting to offend people….Zoom is also, simply, exhausting…having to concentrate so hard at listening. At the end I close my eyes and let the mish mash in my head settle again.

I can’t type and zoom at the same time so all these magic moments have been lost to me. It was suggested I listen to the recording and write afterwards and I did try, but it sadly didn’t work. There was none of the ‘in the moment’ atmosphere and feeling. I was just listening to words, so would simply be typing words without the feeling….again strange and unexpected. So all these moments will be lost through not having a blog, but they were still wonderful at the time even though I have no recollection of the detail.

We’re all having to adapt and change the way we do things and we’re all, I expect, learning new things about ourselves. So now I’ll now have to adapt again and find something else to fill my time, to keep my brain working..

My last session will almost be over by the time this blog gets released. This weeks have been on Finding Time for yourself and Discovering Technology. Technology is the one golden light in all this chaos, enabling many of us to keep in touch…I’m so grateful that I didn’t have to learn it now…

I can’t thank Innovations enough for suggesting it to me. I really have loved doing them and wish I could do more as it’s been a lovely little adventure and can’t thank them enough for enabling me to do it, but I think I need a break for now. Who knows, in a few weeks or even sooner, maybe I’ll come back and humbly ask them again for help…..

as my lovely playmate Agnes said in Tuesdays session….:

I’ve gone from being a ‘Human doer’ into a ‘Human Being’…..

Think I might need to ‘be’ for a while…..

So thank you to everyone who joined me, I can’t tell you how much I appreciated your company…

In the meantime, I’ll take a back seat and just listen and chip in to the ones I do join….I announced on our recent Dementia Diaries zoom get together that I was going to restrict myself to 1 a day….but as my lovely playmate Ron said, “Instead you need to say, ‘Today I will do only one’, as tomorrow you might feel different……”…quite right…

There’s a lovely one coming up next week with 2 of my lovely adorable playmates, Dory and Frances, doing a double act.

In session one Dory and Frances will do a live portrait drawing session of each other. It will be up to us to decide who is the experienced artist ….You will also be invited to bring along your paints, crayons and paper to join in….!

So fun and laughter can be guaranteed…..and I’ll have my crayons at the ready 😂🤣😂

You can take a look here….




“Virtual Cuppas with Wendy” via Zoom…….

I’ve been loving ‘meeting’ people through my virtual cuppas, new friends and old. They’re open to anyone to join in, with or without a connection to dementia. We have a max of 14 people, mainly because I can’t cope with any more! and we have rules about only one person speaking at once and raising their hand or a “I want to Speak Card” or anything bright for me to see.

I’ll carry on for as long as there’s people who want to join me and they’ve all sold out so far. But you do need to book a ticket so I can keep tabs on numbers. Each has a rough theme and I try and have a guest playmate on each too…..

Another thing I found out last week on another zoom call is NOT to take piccies of the screen and publish on social media while we’re live 🙈…as this means strangers, with nothing better to do, can bomb into the meeting and disrupt it…..why on earth anyone would want to do that is beyond me, but many did as I posted a piccie on Twitter of the cast of Maggie May as we were all celebrating, what should have been, their press night in Leeds.

Yesterdays session had a theme of “Trying something new” with guest playmate George Rook. We were saying how repetition is the best way for us to learn new things. One action at a time repeated time and time again. To us it doesn’t matter if we repeat because we rarely remember, so it’s not an onerous task. George has carved some amazing whistles ….❤️…and mine was trying my hand at Flower Pressing. Such an lovely discussion, even though we had technical difficulties at the beginning. They were soon dismissed as I saw the name join us of someone I used to work with at Leeds Hospital many moons ago and I was overwhelmed that she’d taken the time to join me…

So I have another 2 sessions next week. One on Tuesday 7th at 1pm, the theme being “Taking time for me”

 And another on Thursday 9th April at 11am, with “Discovering Technology” as the theme.

My lovely enablers at Innovations in Dementia are making little easy to follow videos to show people how to use zoom and this link will explain how to use it on a phone

Would loved to meet people, new friends and old if you’re free……don’t forget  your cuppa!


A new ‘remembering, a new routine……

I think the biggest challenge so far has been to come up with a new routine with purpose to pass the time of day…..some have been successful others really havn’t….

I tried shaking my routine up on Monday, to break the monotony….BIG mistake….all I did was put the kettle on before my shower instead of after and watch BBC breakfast on my iPad upstairs instead of downstairs …..I was discombobulated for hours……😔..this change in routine confused me no end. A simple change in putting the kettle on before my shower instead of after meant, when I went back upstairs to shower I didn’t know where to start. I had to wrack my brain as I could hear the kettle boiling and that wasn’t the right noise to go with having my shower…it set me back for the rest of the day….mustn’t try that again….

Zoom ‘’get togethers’ have been my way of socially connecting with people. My regular Zoomettes meeting has always been and still is, wonderful….all women with dementia sharing laughter and tears. But many others have now been added, since travel is out of the question. But all these zooms have to be remembered over lots of crossings out on my calendar….I found that really difficult as it’s hard enough to write and read my writing. To try and write over crossings out made me feel anxious about forgetting things.

I started just putting them on my phone as reminders but then there were so many I couldn’t keep track of when they all were and started double booking 🙈… now set alarms and write them on my empty weekly calendar…..however even that went array yesterday as I’d put 2 of the reminders on my calendar and a different 2 on my phone 😳…it wasn’t until my alarms went off that I realised they were totally different🙈…so I had 4 yesterday which was a big mistake…..

I’ve found that two Zoom sessions a day is my max as they’re very tiring as you have to concentrate so much and by the end of the 2nd one I’m all zoomed out. At events and in meetings you can disappear into your own world for a while however with zoom  you have to concentrate really hard to keep up with everything. But it’s certainly been an entertaining way to keep connected and meet some people I’ve only ever known as ‘virtual’ names…..and it’s our only way at the mo…

 I’ve even put ‘eating’ lunch into my new routine 😱, just to have something in that routine. I only ever ate lunch was I was at events and it was put in front of me, but now a Wensleydale cheese roll with pickle is part of my new routine between 12 and 2pm…not quite sure what I’ll do when I run out of cheese 🙄😂

I always fit in a  walk while we’re allowed and take my camera with me to capture the moments….I even post them on the village web site and I’m meeting new people on my walk who suddenly realise I’m the ‘camera lady’ which has been a nice bonus….

This ‘new remembering’, new routine, has come hard to us all. I do wonder what I’ll make of it when it all ends..🤔 already seems odd when you see old footage on TV where people are close together, going about on public transport as we once did. Think I might find it hard to go to big events, where they’ll be so many people in close proximity and sooo much noise.

It was the topic of the ‘Virtual Cuppa with Wendy’ on Tuesday – “Facing your Fears and possible solutions”. There were 3 other playmates on the call with me and 10 others and each playmate expressed the fear of how they will be when all this is over, due to lack of normal ‘doing’. Here’s just one screen of attendees…

I said how we’ll need lots of support from our ‘able enablers’ to regain some possible skills, especially of travelling,  and if they’ve gone to find new ways of doing what we love…unless it’s too late.

I ended by saying how important it is NOT to think of the end as no one knows when that will be at the mo…could be weeks, could be months. So to help us cope, simply concentrate on one day at a time.

“Enjoy today and whatever that brings, and if today is a bad day, a stressful day, then tomorrow might be better”

AND I still adore simply sitting in silence…..

Update on my speech issues……

So last week….was it really only last week 😳🙄…..I wrote about my speech problems, caused, by what I thought at the time, by not trundling and talking all day long; through the long silences that now exist in my life because I live alone……

If you missed it you can read it here:

I really did think my slurred difficult speech was due to this strange world we find ourselves in….

Well yes, in part it is affecting it that way, as I struggle more with word finding, but 2 days after writing the above blog my speech returned almost back to normal waffling. More importantly, my head cleared to work out why it had all happened…..

We now think I had another mini stroke, only I wasn’t able to realise it at the time. Because I couldn’t see my nurse daughter in person, I convinced her it was due to not being out and about speaking so much. But I also realised I’d woken with the tell tale drooping face as well, but hadn’t connected them together and thought I’d just slept awkwardly on that side of my face 🙄🙈😂….

Once my brain was back in order I could fit the pieces together. According to my blog it’s only a month since I had the last mini episode in London….gosh that seems like an eternity ago now 😳…..

 You might think I should have sought medical advice…well it was the first thing my daughters said too 🙄…but in fact, a Gp surgery is out at the mo and hospital is the last place anyone wants to trouble at the moment too (well that’s my excuse😊)….

I was actually relieved it was a mini stroke and not my speech being permanently affected. After all, I’m back to waffling as normal now, so I’m rather grateful it was that.

Me and a few of my playmates have all said how our speech is more of a challenge now, word finding slower, more gaps in our sentences, so it is still a possibility that this challenge will continue. But we’re all trying to fight it through zoom calls and through recording Dementia Diaries – at least we have those options……

So worry not, but thank you for all your concerns, my silent days are hopefully far off…..fingers and toes crossed….. well I have to uncross my fingers to allow them to type……😊

Value of technology in this strange world…..

Last Thursday saw the first of my “virtual cuppa tea with Wendy” via zoom. I’d advertised it on Twitter as a way people could join me by video for a virtual cuppa of tea. The them of that session was Living alone. I have to have a limit as I can’t cope with lots of people on the screen at once. We opened it up to 15 people to join and sold all the tickets, but as usual with these things only 9 people joined me as life takes over and other priorities occur. I say ‘only’ but in fact it was perfect.

For each session I thought I’d invite a guest playmate to join me and last week it was fellow Zoomette, Dreane,  as she also lives alone.

I knew all the peoples names from Twitter but had never met them. I invited anyone to join, with or without a connection to dementia. It was lovely to see new faces as well as old. I met playmate Gail. We’d never met but we follow each other on Twitter and it was sooo nice to talk by zoom……I met people I’d never ‘met’ before which was so nice.

We all sat with our cuppas and simply chatted. The one thing I find hard is not being able to type while on zoom as the content is lost as soon as we’re finished. Must try and find a way round this…….I had my able enabler Anna, from Minds and Voices keeping order. It’s our rule that you have to put your hand up, hold up something bright, or a ‘I Want to Speak card’ to wait your turn so that no more than one person speaks at a time….it worked so well.

I’m holding 2 more this week, one today, Tuesday and one on Thursday.

If you’d like to join me for the tea break on Thursday  2nd April at 11am UK time, you’re more than welcome. There’s still a few tickets left, or there was when I last asked. Just book your place on Eventbrite by clicking the link below ..on Thursday my guest playmate is the lovely George Rook and the theme of our cuppa will be ‘Trying something new’. Apologies for my overseas friends where the time won’t be appropriate.

Of course, me and my fellow Zoomettes have been meeting virtually every Monday for ages, long before this new world began, so I consider myself lucky to have known how to remain connected. We didn’t have to learn how to do any of this as we knew already… strange that people with dementia were ahead of the game…

If you’ve never used zoom, you can watch fellow playmate Frances and our able enabler Aimee from the Zoomettes on this short instruction film which will give you a starter….

I also wrote an article about ‘giving technology a go” especially during this isolating time…for the Young Dementia UK Newsletter. You can read it here if it’s of interest.


An unexpected consequence of this strange world……

Before we entered this strange world we find ourselves in, I was used to travelling about, meeting new people in new environments, chatting to people all day long… was my sudoku, keeping dementia at bay….giving me something to fight it with…but now that social interaction has disappeared, “Talking’ to others is now a luxury. No longer am I starting off my day chatting to my taxi driver, chatting to fellow commuters, chatting to people at events and then all the way home in reverse….

Sadly this isn’t working in my favour as I’ve found myself having to concentrate so much when I do talk; have more problems word finding; find myself stuttering and grappling with words, mt speech slowing down…..a strange unexpected consequence I’d never considered. My typing is fine as I’m typing more than ever to keep in touch….

I suppose it can be compared to when I gave up typing for 2 weeks one Christmas and when I next opened my iPad I couldn’t remember what to do. I’ve never stopped typing since. Now I just find creeeping signs of the same thing happening with talking…..I’m not talking anywhere near as much, so when I do, I struggle more than before, have to concentrate on words, on sentences.….it happened within a week or so of events stopping so hopefully I’ve realised early…..even my daughters have noticed the change…

I open my mouth and the sentence in my head just doesn’t appear, this alien speaks for me and I’m so often shocked at what I hear come out of my mouth. When I talk to myself in my mind, it’s the old voice….my old voice is on the short video we made for the BBC some 5 years ago….you can listen and watch me here along with Keith and Christopher, just months after I was diagnosed… old voice….


But it’s a different voice that appears now when I speak……😔….yet when I talk to myself, in my head, it’s my old voice I can here…comforting but locked away inside my head…

I’ve been embracing this new community of ‘Zoom get togethers’ to try and avert disaster so when Anna Harrison suggested I set up my own ‘On the Web with Wendy’ – virtual chat sessions with me and a guest playmate on anything and everything, I jumped at the chance to see if I could make it work….the first session is today and has sold out, so we shall see how it goes. I plan to do 2 more next week if there’s enough interest….

On Monday, I had 3 zoom calls, the first was the first for Minds and Voices. Many hadn’t used zoom before. We had Eileen zoom in from Australia where she moved to in December!….Elaine couldn’t work out the zoom bit but had the genius idea of FaceTiming Damian, hence the reason why he’s holding up his phone on his shoulder to let Elaine take part and see us all… we had some gremlins but still lots of raucous laughter,

….followed by a call to help me set up my own web chat, and then my weekly Zoomettes call…

During this time of strangeness and isolation, we all need to find different ways to communicate with our fellow human beings. I find it helps me to cope with one day at a time. Think too far ahead and that’s where sadness lies as no one knows where the end is…..

I feel sooo much for those without the internet, without a smart phone….one of our playmates at Minds and Voices is one such person, so other ways are being looked at to help support her.

I’m not saying all this for sympathy. I’m trying to do everything I can to avert this irritation. I’m highlighting it to others as a warning, because people with dementia in Care Homes may no longer have any visitors; people in isolation may not speak to anyone for days; will their words escape them through lack of practice just like everything else that we don’t do frequently….? Keep talking, keep communicating….

I’m so lucky to have my virtual friends…looks like I need them more than ever now….


The Dreaded ‘C’ Word….

Crikey…..what a very strange world we find ourselves in at the moment….circumstances and advice changing daily, hourly! Confusion at so much being stated that I’ve started simply listening to BBC Breakfast update in the morning (as that’s part of my routine) and then my local news for an update in the evening (another part of my routine)…..just so my head doesn’t explode with all the different messages coming out. I’m getting cabin fever just at the thought of being told to stay inside…..🙄

I was quite blasé in the beginning….but now this is impacting on our lives like nothing else I can remember in my lifetime. I remember the miners strike, in the 80’s I think and the electricity restrictions of my youth. When there was a rota for power cuts – no electricity for hours….I quite enjoyed the candlelit evenings, with no television and having to find other diversions….it seemed quite traumatic at the time but it was simply a nuisance… social media in those days….

Nothing like we have now…….

 It’s not the isolation I worry about, it’s the lack of ‘doing’, of stretching my brain that’s involved in planning a trundle, planning a event, planning the plan B, meeting people, being exposed to different conversations in different environments. All things that keep my  dementia at bay on a daily basis.

But then my inbox started to fill…..filling with cancellations…..and silent at offers to speak at future events….it felt so sad.

I’m writing talks that may never be heard, for events that may never happen, just so I can follow my normal routine on a Sunday, when the world is already quiet with no village buses…

The village bus has been as busy as ever this past few days. A conversation started about the possible threat of over 70’s being told to stay at home. The horror on peoples faces that hadn’t heard the news was quite distressing.

This is the only time I see anyone to talk to”

Said one, reliant on the village bus for social interaction….

I’d be lost if I couldn’t go out every day on the bus”

Said another…..each and everyone of us saying how isolating having to stay at home would be.

I’m  the youngest of this group so all of them are over 70 and suddenly ‘digging in of heels’ started….

Let them try and stop me going out” followed by cheers and laughter.

I might be dead this time next month, so I’m not going to stay in wasting time just waiting”

What happens to those unfortunate enough to have been told they only have so long to live, maybe months – so they isolate and waste the life they have left?

Will no one be able to attend their funeral if they do die or will funerals be delayed for months until the situation settles ?

That’s the reality of telling the over 70’s to stay indoors……practical and sensible though it might seem on first glance…..also, as someone pointed out, many 70 year olds are fitting than those much younger……

What will happen to carers, told to self isolate, with loved ones with dementia or any other condition… home help allowed to enter, or even isolated themselves? What will happen to their mental health during this trying time?

How do you explain to a loved one who is physically capable of moving around, but mentally unable to comprehend and remember the problem, that they can’t go for a trundle, that no one is allowed to visit?

I had an event cancelled very late Sunday for Monday morning and had to ring my lovely taxi people to cancel. It’s impacting on them hugely as regulars are working from home, or like me, just not needing them any more.

This virus has raised far more questions than anyone could ever imagine….

I’m lucky I live in such a kind village. They’ve set up a WhatsApp group to help find out who needs help, the village Facebook page is full of offers of help and the village shop posted this message as well as putting a sign up in the shop…saying they will be open for the duration and will home deliver to those in need….

I just know my health will suffer in far worse ways than the Corona Virus could unless I find new routines, new stimulation to combat dementia…….

Some have said, thank goodness for the television, but I’m not a telly watcher. Again, I have my routine of Breakfast TV in the morning for half an hour then it’s off until a couple of hours in the evening. Listening to the radio often makes me fall asleep 😴 🙄…so for me, it’s being outside that matters….

I keep telling myself, the days are getting longer and hopefully warmer and I’ll be able to spend time in the garden.As a playmate said:

Everything will stop….except dementia”…….

I can hear dementia laughing in the wings and rubbing it’s hands with glee……

P.s well since I wrote this things have been changing rapidly….only yesterday I booked a few days away in my paradise of Keswick, only to have to cancel it after the announcement re non essential travel…..when will I get to paradise again…….😔

Invitation to a cancer hospital ward…….

Yesterday I was invited to look round a local cancer hospital ward….in fact the one where my daughter is now a nurse!

Now some of you may be thinking….why on earth am I exposing myself and others to a visit to a hospital ward during this time of Corona Virus…..well at the moment we’re being told by the experts not to cancel events…there’s no need at present. The most important thing is the handwashing routine.  I’m following this advice. When someone says we have to stop public events etc, then I’ll have to stop, but at the moment we don’t.

I know many others are anxious about travelling around and think we shouldn’t, but that’s their choice. I personally feel very anxious at the prospect of events being cancelled, of not being able to trundle as I wish. The effect this would have on me and my dementia, being far greater than the Corona Virus, if I had to stay at home with dementia as my only company. So I seem to be going out for more trundles just in case we’re told to stay indoors as that would be my worse nightmare, I hate being cooped up inside.

It must be a very difficult time for those with conditions such as OCD and for those of an anxious nature. If we all started to self isolate now and not move around, then after the 14 day period we’d all come out at once and there would be an huge spike in the virus again as we’ve done it too soon, before the advice has said that’s what we should be doing.

So for now I’m washing my hands probably more than I should just to make sure I havn’t forgotten. I’m due in London on Wednesday and did try and find a hand gel to put in my pocket, but it appears everyone in my town has snapped them all up as the shelves were empty🙄

Crikey……went right off piste then….back to yesterday ……

The aim of the visit was to discuss with their Sister on the ward, their plans to make their environment more dementia appropriate… daughter Sarah started working their earlier in the year so she was my way in 😂

I woke to a Mr Blue Sky day out of my window after heavy overnight rain….

We were due there at 11 to meet Sister AnnMarie. Sarah arrived early knowing what a nightmare parking was at Castle Hill Hospital…..and it was….we drove round for ages. What a nightmare it must be for cancer patients, already stressed, to have problems finding somewhere to park….not unique to this hospital by any means!

We eventually parked on lines where everyone else was parking, in the hope we wouldn’t get a ticket and ambled to the ward….

We went down a very dark flight of stairs and even though we’d gone down lots, we turned out to be on ground level 😳….very weird.

Using the hand gel before we entered, we walked into the ward, Sarah letting me go first so I got first impressions. On the left was an empty desk, which wasn’t very welcoming, but then I was with Sarah and she knew where to go. It was then that the temperature changed and friendly smiles appeared and a friendly atmosphere appeared along with a Digni-Tree…

And a lovely Family and Friends tree…

AnnMarie was busy so Sarah showed me round. We went into the area they’re wanting to transform…

A very dull, sad sitting area was waiting for a make over. I started to reel off all the possible changes….”OOoo wait ‘til Anne Marie is here ‘cos I’ll forget what you’ve said” said Sarah 😂🤣😂🤣

It was a lovely space with so much potential as it looked out onto the garden with benches and an empty bird feeder, that simply needed refilling to attract the birds to come…

There was little contrast, little colour or happiness but all this is easy to put right.

Finally a smiley AnnMarie was ready for us and we went into her office.

It was nice that she immediately said :

I want to improve dementia care from the inside out……” and also”

”I don’t want it just to be ok, I want it to be perfect…”

Dementia on line module isn’t mandatory for all staff in the hospital (which it needs to be), but AnnMarie insists on it being mandatory for all staff on ward 30…👍⭐️

We chatted about the options opened to her. They’d received many donations which they were going to use to improve the environment. It’s not difficult to change an environment to be not only dementia appropriate, but people friendly too. Your in hospital for a sad reason often, so to have a dull cubicle room or a dull seating area wouldn’t lift anyone’s moods.

I spoke of the importance of contrast, and taking black and white piccies to see if colours go together – switches that we need to see can have a border painted round them as I have at home, and simply leave those we don’t need to see.

Putting simple coloured non slip mats onto the tables would make them brighter. I mentioned loads of things but forgot to type so not sure what I said.

One patient allowed us into his room to have a look round. It was very dull, very much the same colour throughout. Once again, it wouldn’t take much to brighten a room. They’re restricted due to infection control stuff and other restrictions, but this doesn’t make it impossible.

Each patient has a board with the day, date and which nurse is looking after them. I suggested a smiley piccie of the nurse to make it more personal. Having something on the wall to look at when you’re in bed, would help the boredom and sadness of looking at a blank wall, so suggested commandeering local artists or children to make colourful pieces for the wall.

They use the butterfly scheme on the ward to identify people with cognitive issues, but some relatives and patients aren’t keen on this being used as an identification marker. I love butterflies, so I’d have no problem. Also people need to understand WHY it’s a good idea and sometimes I imagine there’s not enough time to explain. I did wonder afterwards, if they could have a wipe clean information folder in each room with things like that in along with meal times, etc. It would give relatives and patients alike something to read when they first arrive to make them feel more informed and comfortable…..

As I said, not everyone has a diagnosis, so observation on the part of the staff has to come into play as well.

Sooooo much else I could have said, just not enough time. I’m going back to speak to staff in a couple of months so hopefully I’ll be able to say more then…..

I suppose you have to strike a balance between making a room friendly and comfortable and not too friendly that people are reluctance to go home….😳😂

 We ended on a happy note with a piccie by the Family and Friends comments wall……..

AnnMarie has so much enthusiasm, so much passion to get it right…

Plan for Tomorrow, Live for Today……..

Last week I received a copy of “My Future Care”, sent by the lovely Zoe Harris, founder and CEO of My Care Matters.

“Mycarematters is a social enterprise with a mission to improve the experience of care in any care setting. We enable the whole person to be taken into account by all those caring for and interacting with them.”

I’m sure I must have met Zoe in person on our various travels around the country, but our main connection is through Twitter…

Many people, when diagnosed, like to forget about the future, some like to bury their heads in the sand and pretend it will take care of itself. Well, undoubtedly it will, be will what happens, be what YOU want to happen? Have you spoken to those closest to you about future care, about death? It happens to us all!

Well me and my daughters have, but last Sunday me and Sarah went through The handbook page by page and even we found it helpful to clarify some points, to highlight some detail we hadn’t gone through. I knew I’d had recent up to date conversation with one of them but can never remember if I’ve spoken to both, so this helped with that too.

Sarah is an nurse in Oncology so has these types of conversations with patients all the time, but for many families, they may have never spoken about anything like this so need direction, need guidance.

For those that have never had those conversations, or maybe don’t know where to start, it felt like a gentle process. A simple, straightforward, tour of everything we needed to talk about. And if you were worried about the sheer volume of information, there was a useful ‘colour coding’ to highlight what you should read if nothing else at the bottom of the Index…

There were, as I said, things in there that made me think. For example in the funeral details bit, Sarah asked where is my address book? I could also tell Sarah that I didn’t want a funeral as such and instead want a ‘straight to cremation’ with a celebration gathering once they’d received my ashes, so I could ‘be’ there 😂🤣….The image of both my parents disappearing through the curtains for cremation having stayed with me and not what I want my daughters to remember.  I also want the celebration it to start at 11.55……a special time which many will understand the relevance of….or maybe just something on line at 11.55 so my daughters don’t have the hassle of organising anything🤔…mmm more thought needed me thinks…

But before we got to that conversation, we were taken through all the maize of forms that exists and which should be completed – the Will, Advanced Care Plans, Lasting Power of Attorney, Letter of Wishes and the other myriad of ‘stuff’…but it didn’t seem overwhelming. All the forms are a minefield if you have to discover them yourself, but here they were all present, in a logical order. We did think some bits started to get confusing until we realised, it was because we’d already gone through the process, we didn’t need to plan…

Yes, I was lucky, we’d had all these conversations. Many others can use them as guidance, for information and for useful reference.

The biggest advantage I can see is that it gets people talking. My daughter had to help me as I can’t write consistently legible so no one would have been able to read it! But even if you wrote it yourself and handed it to those closest to read, as a starting point, it would be invaluable.

Sarah said afterwards:

I found the handbook very easy to follow, in a logical order and covered everything. We, as a family, have done most of the advanced planning, however, the funeral planning was especially useful for us to revisit and discuss.People in the earlier stages of planning should find this to be exceptionally informative and a prompt for useful guidance and discussion”

We plan the birth of our children in any way possible, so why not our death?

Once you’ve had these discussions, you can carry on living your life in the full knowledge that what happens in the future will be a lot smoother than if you hadn’t plucked up the courage and TALKED ..…..

 But as the message on the front of the handbook says:

Plan for Tomorrow, Live for Today”

Yes, the handbooks do cost, they aren’t free. But Carematters is a not for profit organisation and it has cost them to print so, like anything it does cost to produce. And yes I got it free, so would I have bought it if I hadn’t. Well, if I’d was at the start of or confused by the maize of processes, yes I would buy it. The content is invaluable and what price can you put on peace of mind?

More information of the handbook on their blog web site:

Or on their normal web site:


Back to Back debate……

It was a comment on Twitter that brought me to write this blog…

A lovely friend was asked:

“I just started in a care home & was told not to wear anything black as dementia patients cant see it – is that right?”

 He replied that it was head shaking stuff and suggested it was a myth. 😔

This person is lovely and works hard to support people with dementia, but either I misunderstood or he simply got this one wrong as for me it clearly is anything but a myth.

Many of my playmates are fine with black. It doesn’t affect them at all, but others, like me, find black a difficult colour, I know my lovely playmate Agnes wears black. Some see a problem with it but don’t understand why; they can’t analyse the problems they experience.

It simply shows how we’re all different. No 2 dementias are the same. But it’s important for others to understand that problems can arise and what to do about them.

For me, black is a disturbing colour. On the floor, it makes me hesitant and do a double take to understand it’s just a black mat,for others it looks to all intent and purpose like a hole in the floor. The same with TVs that are switched off – they’re black, so to me I have to tell myself they’re simply switched off and not a gaping hole.

When people wear all black, I find it hard to decipher their body. I can only see their face and their hands. They look like limbs floating around the room. I can laugh about it because I know it’s dementia making my brain interpret the information incorrectly but those that can’t analyse must find it disturbing or even frightening.

I used to have a wardrobe full of black, now they’ve long gone been taken to the charity shop. I feel disturbed and uncomfortable when I wear black. The only black I like is the black writing on our yellow ‘I want to speak cards’ as the contrast is wonderful. If it was a black card with yellow writing, it wouldn’t work for me.

The way our senses can be affected are as individual as the person themselves.

Every Monday I meet online with the Zoomettes to put the world to rights and we spoke then of how we’re all labelled with different types of dementia. But unless it’s a clear cut dementia, then it appears to me to be guess work on the part of professionals.. I believe many mixes of dementia exist that havn’t been discovered yet. We sometimes have symptoms that come from a variety of types, just snippets that don’t fit the mould of our diagnosis. We still know so little about the brain……..

So be observant, ask why a person might find something disturbing and others are fine. That’s why I wear dark blue trousers – they’re kind on my eyes, unlike black….. and colourful tops. That’s why I find going out in the evening, in a place I’m not used to, a challenge, as the dark unlit corners appear strange and disorientate me. It’s hard for me to find my way from A to B as my eyes are thrown all over the shop.

sharing symptoms helps others understand theirs and also helps the outside world into ours…….

So please, don’t dismiss something simply because some people with dementia don’t experience the problem.  They can be very real for the individual……..