Dementia and Cancer……..

It’s been such a quiet week for me that it gives me the opportunity to share news from others.

This week I had an email from one of my favourite species…..a PhD student from Leeds Beckett University, Mollie Price. Mollie is doing her PhD on living with dementia and cancer and exploring the experiences and support needs of those caring for those with the dual diagnosis. I’m monitoring one of her fellow students research on the dual diagnosis but from a different angle – I like it when all the student studies are interwoven and compliment each other. This way they can help each other but it also helps us see the bigger picture instead of research projects being done in isolation…….

In her email she said:

“As part of my PhD project, I have recently launched an online support forum specifically for carers of people living with dementia and cancer within the Alzheimer’s Society’s online community ‘Talking Point’, where people supporting a loved one with both dementia and cancer can come together to share their experiences, and offer each other peer support and advice. We are also hosting Q&A sessions on the online forum with experts in dementia and cancer. The first one was hosted last week by Lorraine Burgess, a Macmillan Dementia Nurse Consultant at the Christie NHS Foundation Trust in Manchester. We are trialling the online area for a period of 6 months.”

Well, always happy to help this lovely group of people so here’s the link:

https://forum.alzheimers.org.uk/forums/caring-for-a-person-with-dementia-and-cancer.81/

The Dreaded Quiet week…..

I’ve had such a quiet weeks lately …..only one trundle this week that happened to be yesterday…..
People have said maybe it’s the quiet before the storm…..but I prefer to have a steady continual drizzle. A long period of quiet followed by a full diary is so hard to get through. Dementia lulls you into enjoying the peace. It tries to strip from your memory the process of ‘doing’……’not doing’ becomes relaxing, becomes the norm, becomes a joy……☹️

When I say ‘doing’ I’m talking about being involved and having your mind stretched by the planning and travelling; different conversations in different environments.

I’m not saying I’m bored and have nothing to do, as I always make myself ‘do’ something. But being involved with professionals stimulates the brain beyond simply ‘doing’. You actually feel the door being closed on dementia…..never fully locked but closed enough to prevent it seeping in and wrapping itself around me…..

Some might say that what I’m describing is ‘employment’ but I could never do a regular job as that ability left me years ago. I’d be unreliable, inconsistent and a liability which would do me more harm than good. So we’re trapped, trying hard to keep ‘doing’ but reliant on others asking us to be involved.

It’s been a struggle to keep motivated this last couple of weeks, keep dementia at bay. I’ve had my eyes closed a lot and been tired most of the time..simply because I havn’t been ‘doing’……never good…….

Anyway end of moan and feeling sorry for myself…I know I’m verrrrry lucky really……

So yesterday I had a meeting about a new research project………

Cathryn Hart picked me up from home and drove us to the lovely bunch at Willerby…..
I couldn’t for the life of me work out why I was going so Cathryn filled me in on that bit too🙄

We arrived to find the lovely Alison with my cuppa tea in hand all ready…..I did take a piccie but then realised I had Cathryns notice board for all to see behind her!

And so I sat happily at the table in Cathyns office having my cuppa and looking at Cathryns happy board of all her staff…….

We were there to meet Mark Wilberforce, a researcher from York University to hear about his new project and me possibly being involved.

NIHR and many other organisations are putting far more emphasis on public involvement, which is wonderful, but I’ve come to the horrible realisation that this is back firing on us on occasions.

I’ve had several emails lately asking me to be involved and I’ve turned them down or they’ve not replied when I’ve asked for the finer details . I’ve heard from other people with dementia and what has made me sad is that they have been so grateful to be asked that me thinks they could be used in some circumstances simply to get funding.
I had one email that asked me to be on their steering group and when I asked the usual questions around the detail, I was told ‘Oh it won’t involve you doing much at all. We just need names on applications to get the funding……’
To think such things is appalling, to state them is unforgivable. Some researchers have a lot to still learn sadly……needless to say I turned them down….

We’re all different in the extent we want to be involved and all are important.

Anyway, off soapbox and back to yesterday…………

I’d had a long email discussion about my involvement and was more than happy that Mark gets it and the fact that Cathryn knows him made me feel comfortable………..

His project is about people who could use social care services. It’s about people with dementia and other complex needs who find it difficult to engage well with home care services . Outside help can be difficult to accept. It’s difficult to receive help in that short time and can be distressing in a rushed atmosphere. It’s difficult for the home Carers to deliver care in such a short time and so it becomes distressing for all and the process falls apart.

It’s finding out why they refused care or find it difficult – is it the way it’s being delivered. It’s easy for care workers to say they’re a ‘difficult person’ or ‘refused the visit’ and they go onto the next person. The cycle then starts again when new care workers appear on the scene again.

Support workers (some areas call them Health Care Assistants) are one of the biggest resources in mental health trusts. They’re not qualified, they’re cheaper, but the big factor is, they have more time than Home Carers. They have that bit more experience than home care staff because they can be used to people with complex needs.
We think they’re able to build bridges because they have more time and knowledge.

The outcome of the project is to come up with a manual for Support Workers to enable them to know where the fine lines are, where things become counterproductive.
The resource will be used for support workers to help them with social care. Support workers in mental health teams tend to stay in their post but care home staff tend to swap and change.

Continuity is so important but only with the right person with the right skills…. But it’s important that Support workers be guided towards best practice…..often Support workers can go into a situation and build the bridges needed for Home Care to restart.

It’s being funded by National Institute for Health Research and the final go ahead for this qualitative study should be in the summer……nice to be involved in something early doors.

After Cathryn took me home I was on Billy duty, so trundled along the back lane of the village bathed in sunshine….

And let Billy out for his afternoon trundle of his patch……but it did involve him trying to follow me back home for a while…….

Me and my shadow……or more accurately Billy and my shadow……..

Why I analyse my dementia…….

Most people go about their lives without analysing why they do things. They just live their lives from day to day and never think, ‘Why did that happen?’ or ‘Why did I do that?’. I’ve been asked recently, ‘Why do you analyse dementia, why don’t you just live your life? Well for a start, it’s very hard to ignore dementia And I suppose I’ve always questioned, analysed, been intuitive. Analysing helps me cope with this dementia of mine so helps me cope with my life.

My old self is still here, trapped inside me and on some days her presence is strong and she’s able to help me through. But on others she is faded and whilst desperately trying to help, her strength isn’t there and dementia wins the day, her grasp on me too weak.

Compare it to falling off a cliff and someone grabbing your hand to save you, preventing you from falling. As time goes by their grasp becomes weak and eventually you will fall. Just like eventually my old self will fade away and I’ll be left alone with dementia winning the day.

You night be wondering why I write my blog; why would I write things down when it would be better to forget them? Well writing my days, thoughts and ramblings down helps me to make sense of what’s happening, helps me understand and helps me to help my daughters understand. If I didn’t write everything down my daughters would know very little as I would forget to tell them and when I see them I’m always just happy to see them and forget anything bad.

It also helps me document all the wonderful things I’ve done, all the amazing opportunities that have come my way, that would be lost if I didn’t write my blog.

Many ask, ‘But how can you remember what’s happened’?……..well I usually type in real time. On my journey and then at the event. I’m sat there typing away the detail of the day. I can always remember if I enjoyed the day as our emotions never disappear but if I stop typing, the detail will fade and disappear in the blink of an eye.

Typing is also my escape from dementia. I’ve said many times how I can type as though dementia never entered my world as that part of my brain remain unaffected so so. It’s still only two finger typing, but I can still type words quicker than I can think and speak them. The words we think in our minds, transferred to my fingers, whereas they wouldn’t’t reach my mouth to speak them………..the brain is a wonderful blob that we still know very little about……….

So if thoughts suddenly appear in my mind, I can instantly type them. It might be the title of a future blog, or simply a sentence that springs to mind.

Some may think it’s a nuisance to be able to analyse what’s happening to me – ‘isn’t it a worry for you?’……..well it would be more of a worry if I couldn’t. It wouldn’t feel right for me.

I’ve always been quite a good judge of character …..but since dementia my intuition has been heightened.

Many others have said this too. I know instantly if I like someone or not; whether I should say yes or no to an event from the first email I receive from the tone and language used…..or maybe I just think I do. But so many others have said how their intuition has been heightened – maybe because our brains can only cope with small chunks, small detail at any one time, so we see the important things.

The brain is such a complex organ. I find it fascinating. Obviously I wish I was a bystander but dementia has given me a close up view of it’s intricacies ……..maybe over the years, my blog will help understand my dementia more fully as I deteriorate and help my daughters understand what’s going on in my head……..so that’s why I analyse my dementia……..😊

Does Brexit have a hand in my Pharmacy chaos…………?

Last week I picked up my monthly prescription of tablets in order to fill my pill box. It wasn’t until I got home that I realised they’d given me a different brand than usual so colours, shapes and packaging had all changed……..

From my frustrated tweet, which said how I really wan’t sure whether I’d put the right pills in the right boxes….. came so much conversation, Debate, concern and advice……I LOVE twitter for this very reason.

Many have asked why don’t you let the pharmacists fill a blister pack for you. Well this is the first time it’s happened since I changed Gps….my last Gp suggested I come off Donezepil because it was of no use……I asked him:

“So if it was you and Donezepil was the only drug available, would you come off it…….?”

He didn’t respond so I changed Gps and now have a lovely one willing to listen, willing to learn, willing to exchange knowledge…….just how a Gp should be, but only since reading my book has she changed. She was always kind, but never listened as much as now – bonus😊

Anyway when I asked the previous pharmacy about packing them for me they said they couldn’t put Donezepil to be taken in the morning as the information they have says to take it at night…….But if I take it at night it makes me have weird dreams so I take it in the morning – no more weird dreams but it means chemists won’t help me, or the last one I encountered said it wasn’t possible. I now realise, from Twitter, that it might be possible for them to help me ……….

So now I have a different chemist I never thought to check whether what the last one said was true……..until Twitter put me right…….

The conversation on Twitter lasted right up until the following day with various people tweeting their thoughts. It also provided lots of discussion with people highlighting their issues.

One person said how the print was so tiny it was difficult to read. This could be solved by the key words being in large print e.g. 2 at night maybe? Yes, I realise the printing machine probably can’t do this but maybe it could be handwritten in a space? But then someone on Twitter said,

“I find it useful to go into camera on my phone and zoom in to read small print”

What a good solution⭐️

Others said how a busy chemist is unlikely to have the time to put the effort into caring about shape or colour as they’re under so much pressure. Others have said how their local chemist was so helpful and had time to listen to their needs……Crikey, I’d never even thought of a post code lottery in chemists…….

One of my dear friends said on Twitter than he’s now succumbed to the chemist providing his tablets ready packed, but:

“I now have to trust them to get it right, so it means I am far less aware of what I am taking.”

So is that right too? I know that if I allowed the chemist to pack them for me and they arrived looking different, then I wouldn’t trust they hadn’t made a mistake. How would I know? After all there’s humans involved in the process and humans make mistakes. So I’d feel continually anxious when I looked at my pill box. I have also always taken a high dose Vitamin B supplement so that wouldn’t go in the blister pack, and would need to be remembered separately.

If I went on another clinical trial, those tablets wouldn’t go into the blister pack – another one to remember separately.

Others said how it’s the changing shape and colour that confuses. Here’s mine this month that changed colour

And the bottom ones changed shape….

Maybe those who request through their Gp could have a note on file to say use the same brand maybe?

Some said how the pharmacist has to tell you when the colour changes or they’re a different shape…..well mine might have told me but the minute I walk out I’ll have forgotten that he said it ……🙄

Some packs of tablets are see through and others you can’t see what tablet is in the blister

Why can’t they all be see through so you can see what’s in it? I suppose pharmacists must have a way of knowing🤔 but it would make it easier if there was consistency in packaging.

Also this time I was given a bottle of tablets instead of a pack

More confusion all in the same month……no wonder I didn’t know if I’d put the right tablets in the right slots!

Twitter, of course, provided lots of advice including this local link for me from an admiral nurse

https://communitypharmacyhumber.org/services-by-area/east-riding-of-yorkshire/el23-medicines-management-er/

Another more concerning Tweet was about Brexit 🤢…….their chemist told them that:

‘Brexit stockpiling has made it hard to get someone medication in store leading to capsules changing colour, other pills changing size as they try and get their hands on anything they can…….so this may be a small problem that’s about to get much larger……’

So the ever present Brexit is now going to compound the medication confusion as well as everything else🙈😳🤯🔫

For anyone who needs it, could a note go on their file to say, ‘needs consistency of medication appearance’ or ‘needs large print’ or whatever?

It felt like another case of we don’t know what we don’t know until kind people on Twitter Fill in the gaps……

We try to remain independent, to cope on our own. At every avenue I feel like there’s a battle that has to be fought……why? I know others have it so much worse but when a chink of your independence seems to be ebbing away you have a tendency to feel a tad sorry for yourself. I guess that’s how I’m feeling now……

A Guest Poem by Bob and request from his wife Sue…….

I may have lost some old friends due to dementia but I have gained a wealth of new ones.

Today’s blog is a husband and wife duo of a blog…….. My dear friend Bob, also living with dementia has sent me yet another gem of a poem. I’ve told him I’m going to have to create a ‘weekly Bob slot’ for his wonderful poetry……he ended his email by saying, ‘Thank you for your calmness and warmth.’ Well thank you Bob for your amazing poems……

SOME DAYS…WARM FRIEND

Some days have no ways
of raising your spirits
or enlightening your heart.
So,
when there’s such blankness,
where do you start
to lift up the cover
and light up the room
enclosing your ‘can-do’,
pulsating your gloom?
Then,
no waste of time
in this mood of ‘reflect’.
Get up and get out!
Be bold! Go!
Connect
with those that you love,
and share where you are!
Have no reservations!
Pooh-pooh the ‘do-da!
Be honest and open!
With a true friend you’ll find
warm satisfaction
and calm peace of mind xx 29/01/19

The second part of the blog is a request from his wife Sue, to advertise an event she’s involved with organising. I suppose this bit is for people local to myself to check out. So here’s the advert…..

It’s a chance to have some lunch time fun and food and all in the name of a good cause…..Sounds wonderful…….if you’re local would you mind sharing this amongst your friends please? Thank you 🙏

I’ve met wonderful people since being diagnosed and Bob and Sue are two of the most recent.😊

A Trundle to York…….

Yesterday was the first day in ages that I’d had two events back to back and it didn’t come easy. I was soooo glad I’d organised everything for the week on Sunday, as I always do, which meant paperwork, tickets and instructions were waiting for me on the side to put in my pink folder.

I was at Bradford Uni the day before and yesterday I was with Bradford again but at York for an event to celebrate one of the studies I’ve been involved in.

I’d got back the previous evening very tired and brain dead and then had to get up at silly o’clock for the early train to York. Normally this would be easy peasey as it’s my best time of day, but once again, routine has gone out of the window and 2 days running of out and about was hard.

Anyway….hopefully I’ll get use to it all again. It was a very different day from previous and the playful skies over the Humber had been replaced by an unwelcoming grey rain filled sky……but still there were chinks of hopefulness ….

Sandra was meeting me at York station for us to amble down together to the lovely Railway Museum – a train enthusiast paradise.

We were there to promote the findings from the BHiRCH Pilot project – Better Health in Residents in Care Homes. The aim was reducing avoidable hospital admissions from the care home.

As always, it’s been wonderful being on the reference panel for this. I often say that I’m doing it for purely selfish reasons – i.e. wanting to make things better for when I need them😂 but in this case it just reignites my thoughts on not wanting to ever go in a care home. So maybe I’m doing it for others with this project as some people want or have no choice but to go into a care home for various reasons.

Sandra’s train was late🙈🙄 but we’d left lots of time so ambled to the Museum. We were early so a cuppa tea wasn’t ready🙈 but we were early so forgiven. When the tea did arrive they had lovely big mugs so immediate brownie point……..but quickly taken away as when I went back for a second cup and they’d run out of water AND tea bags😱…….. had a strange concoction of Afternoon Darjeeling tea, which someone told me was real tea…….wrong………

Anyway, back to the session. The room was chocca as the event sold out days after being advertised…..
Prof Raymond Koopmans from the Netherlands was the first speaker.

In the nursing home where he works they have separate units, one being for people with Young Onset and day centre for people to stay active. Mmmm interesting. The Dutch government fund the University Care Home Network.

Here Care Homes have a designated GP but in the Netherlands they have specialist geriatricians. It’s a unique specialty in the world. They are employed by the Care Home.

They work 24/7 and have to be with a patient within 30 minutes any day any hour. All residents have electronic resident files which the doctors can access at home if out of hours and prescribe electronically.

Someone asked a question asked about funding and his response was that all care homes are state funded.
The charge to the resident depends on their income but everyone gets some if not all financial help.
In the Netherlands they have the money but have a severe shortage of nurses. They ideally want a ratio for 2 nurses on 8 residents…

I asked if the Netherlands have the 3 tiers as we have of Residential, Care and Nursing Homes?
His response was, since 2015 all residential homes disappeared as emphasis was put on staying at home but this huge transition has led to the Nursing Home system being under huge pressure hence the lack of nursing staff.

A really interesting talk on a system elsewhere in the world and comparing it to ours………..
Are we all moving to the Netherlands……?🙄 the room was busy looking up flights and packing bags…….nurses thinking of a change in country maybe 🤣

Next up was Prof Murna Downs……this project has been going on for 5 years……yes they want to keep people out of hospitals, but the main aim is for better health in residents in care home who are often hospitalised for conditions that could have been treated in the Care Home. They concentrated on 4 condition, for example Dehydration and Urinary Tract infections. It brought us back down to earth talking about this country’s system……

The Stop and Watch Early Warning tool is a simple tool available on line for anyone to use……..

Older people respiratory problem don’t always manifest in coughing, they become quieter….so knowledge is key to identifying changes early. They want the care assistant to feel a key part of residents medical care. But to do this they have to have the knowledge and training and TIME to do this. The family should also know the process as part of the care team as they often know best what’s normal and what’s a change.

Next up was my lovely friend Barbara Woodward-Carlton……who heads the Carers Reference panel, which I’m a member of……. Barbara told the story of her mothers traumatic experience in hospital. For her to say, ‘I don’t like it here’ was very significant.
She spoke of the important role of the Carers Reference Panel for this project. Bradford Uni of Dementia Studies has such a panel on all projects.I’m on lots of them, which makes me very happy.
She spoke of how Care Assistants are undervalued and underpaid.
Wonderful Barbara🥰

We finished before lunch with a panel question time. Liz asked the question of the day
”what is difference in the culture of the Netherlands that means the elderly are valued and funded in later life”……….He answered by saying that the current government has an interest in elderly care. He also said how one or 2 celebrities had a mother with dementia and wrote a book about it which attracted high profile discussion and helped lead to a change in culture.

In the Netherlands people do not have to sell their homes to pay for care……..

Very good questions, very good answers and then time for lunch………but it was by pure coincidence that I had a comment from someone from the Netherlands on my blog yesterday saying how there is little knowledge of Young Onset in their country……another case of you don’t know what you don’t know maybe?

Our unusual lunchtime venue!

The long day the day before followed by an early start yesterday meant brain shutdown came early and the afternoon session was lost on me sadly but I imagine it was very good……

What I did take in was that It was so refreshing to hear researchers stating the negatives as well as the positives. So often we’re given an ideal interpretation when a more balanced view is needed. That’s what we got today. The most interesting observation was that there weren’t as many unavoidable admissions into hospital from Care Homes as previously thought. So is the hype, political hype, to give the impression that more blocking of beds is coming from Care Homes?…….really interesting food for thought and just goes to show you should never believe all you read or hear ……….

People often ask me how I get a blog out so quick…….well I type it in real time, on my journey and then throughout the event. By the time I’m home, all I have to do is add the piccies from the day and hey presto it’s done. If I didn’t do it like this and left it until afterwards I wouldn’t remember the detail……😊

It was lovely to trundle past Wressle Castle bathed in sunshine as all I could do was stare out of the window……very tired but another good day……

Listening to the work of my favourite species…..

Yesterday I trundled to see my favourite species – students at Bradford University. This time I was there as an Alzheimers Society Research Network monitor for the DCT (can’t remember what DCT stands for – hate acronyms 🙄)……….

Anyway some of the PhD students were there to give us an update and presentation of their work so far.

It was a strange start to the day as my legs and brain had obviously had an argument and weren’t talking to one another…..at the station I even had people helping me on the train and the guard showed me to a seat, so I must have looked a tad discombobulated and legs and body out of sync😳🙈……..there’s no routine for the necessity of early rises and train journeys at the mo, so maybe that was it…….I’m also a bit doped up with tablets at the mo, so that could be another reason……who knows………maybe they’ll make up and talk to one another soon 🙄

Anyway the trains behaved in the beginning and I’m typing this on the second train to Leeds.

The sky looked almost playful as we trundled along the Humber

I arrived in Bradford amazingly on time, and wobbled my way up the hill to the Uni where I found Sandra, Barbara and Jackie in the cafe and Vivien joined us in the room …….The students were all ready and waiting with their supervisors all ready too  and Paul had the first slide up on the screen

After a cuppa tea, catch ups and hugs, we were ready to start……

Barbara started the meeting and we introduced ourselves. Students, Helen, Angela Suzanne and Paul were the ones under the spotlight today. We celebrated Courtney’s and Denise passing of their PhD – amazing………both were sadly not there as they’re now working!

We suggested they make a mini podcast on film giving us an update of what they’re doing now😊

Murna then spoke about a possible celebration and dissemination event in July to celebrate their graduation.

Paul was the first to present an update – his study is on how people with dementia manage their medicines at home with the help of community pharmacists………

In the literature there is little in relation to medicines management particularly of those living alone…..
So this formed the basis for the questions for his project…..he will be gathering information from people with dementia on attitudes, challenges, routines and strategies, Types of support and what would help……..
And then ask the same questions of pharmacists……

I asked the stupid question “What is a Community Pharmacist’……..I hadn’t realised there were basically 3 types, Hospital Pharmacists, Pharmacists attached to Gp practices, and Community pharmacists (the normal high street pharmacists)

Sometimes it’s the simple things that help……for example medication in liquid form than tablets. I mentioned the importance of colour – if I needed 1 familiar pink one, that stood out, then giving me 2 white ones won’t help…..

Suzanne was up next……her study is on investigation the quality of medication management when moving from care home to hospital and back again.
It will hopefully inform improvement into the practice and influence policy.

She’s looking at policies in the hospital and care home – their roles and responsibilities at transition points between the 2 establishments.

There seems to be so much confusion about best practice around medicines and transition between care home and hospital and in reverse…
The question was raised around responsibility when someone with dementia is admitted to hospital – should someone from the care home go with them? But is that practical if the person maybe in A&E for 10 hours or something. Who is accountable for information transfer? It’s the tiny detail that makes the difference between someone taking medication and someone not.

It’s not just a list of drugs that’s needed, it’s the finer detail about the person themselves that’s useful to know.

Paul gave the quote of the day……“Without responsibility there’s no accountability”

Lunch and cuppa tea time and the students gave me a belated birthday card……🥰🥰🥰

Third up after lunch was Angela who is looking at the nurses role in transition between hospital and care home paying particular interest in the discharge process.

Her main questions are around roles and responsibility and the barriers and facilitators for implementing these roles.

She is gathering both perspectives from nurses and care home staff about what is their role when someone with dementia is being discharged back to the care home.

She found a lot of variation in practice around information exchange. Lots of tensions within the system.

The one side don’t understand the others practices … there’s no joined up working sadly. IT systems don’t talk to one another which are big barriers to helping good practice.

I said how hospital managers and Care home managers and Pharmacists, need to be invited to hear the outcomes of all these projects. They need to be made to look silly as they won’t believe the staff on the ground have the problems they have. No good having the staff as they can’t make the change but managers should be made accountable for such rubbish and disjointed systems. They should have a job swap for a day…..hospital nurses have very little knowledge of what goes on in a care home. They don’t see how they are all one big team. There’s a cultural issue of how care homes are viewed.

Finally Helen gave us an update about her project. Talking to women who lived on their own when diagnosed but not necessarily now. She is doing it through narrative research, so gaining valuable information through conversations. However, she found it so difficult to gain interviews because, she thought, of racism and gatekeepers. It’s about people attitudes and assumptions. Dementia has silenced a lot of people as gatekeeping comes into play. The mental capacity act is being used to stop people doing things instead of enabling. She has only been able to get women through word of mouth. No other method has worked for her.

From all I heard there was soooo many examples of why I never want to go in a care home…..or into hospital……….

At the end me, Sandra and Viv met with Prof Jan and Prof Murna to discuss the meeting from the perspective of the Alzheimers society research network monitors……..just so we could complete our feedback form.

Needless to say we were well impressed as we always are here at Bradford. Seeing the students eyes light up when they speak with such enthusiasm is a joy……….wonderful…..

Our own Solitary Bubble……

Last weeks blog:

https://whichmeamitoday.wordpress.com/2019/01/29/why-are-we-deemed-so-worthy-of-so-little/

…brought such a response, especially from people reaffirming what I thought was true. Sometimes, I wonder if it’s ‘just me’ as dementia is a lonely place sometimes.

I live alone yet have the wonderful company of my silent community on Twitter to keep me company or I can be in a crowded room yet still feel alone, such is the chaos and confusion all the noise and conversation makes.

So it’s why I often put things on my blog,  just to see people’s response; to check I’m not alone in my thoughts.

I know I’m lucky to be able to do this – to type a blog, to have a silent conversation on Twitter. Typing being my escape from dementia.

Those without this virtual support must rely heavily on those around them, if they have people. For those living alone, or whose families have deserted them, it must be a very lonely and confusing existence. Although, for some, maybe it isn’t……

I see a chappie frequently in town who clearly in my eyes is living with dementia. The locals refer to him as ‘not quite right’, but not in an unkind way. He’s always alone but he sits happily in the bus station on the benches and chats to anyone politely who sits beside him, about the weather, and smiles contentedly. He gets on the same buses and travels to the terminus and back and then hops on the next familiar one or repeats the first. Most drivers seem to know him and are kind and understanding. He’s happy and content in his trundling world. This is the routine he’s devised for himself.

So not everyone has insight, purposely creates strategies and solutions. They just get on with their life as best they can. Perhaps they’re not even aware of their diagnosis. Helping themselves and hoping others will be kind along the way.

However, it’s when kindness gets lost and forgotten that problems arise. Like when an unfamiliar, possibly new driver, wouldn’t let him back on the same bus as he’d already been on it 3 times that day. He then sat alone on the bench, confused and sad, his routine broken by unnecessary words. Moments later, I was about to move and sit by him, when another man sat down and started chatting to him and the smile appeared on his face and all was right in the world again for him……because someone was kind.

The villages who catch my bus always make sure I get on the right bus, especially if its busy or the bus parks in a different place. All eyes are on me, as I often wait in a quiet spot further down. I appreciate their kindness especially when it’s confusing.

Kindness costs nothing and can make someone’s day. Harsh words cost nothing and can throw someone’s world into disarray……I know which I like best…..how about you?

My Monthly Trundle to see New Staff at Humber……..

I havn’t quite got back into a routine as my calendar is still quiet as the world wakes from Christmas. So it’s always a welcome when my monthly trip to Humber comes round to talk to new staff on their first day.

Some weeks I can fill my calendar many times over……take Dementia Awareness week in May….well I could have already filled that week 10 times over as it’s been full since last year.
Note to organisers – Dementia Awareness week should be 52 weeks of the year – why not have your own Dementia Awareness Week in your organisation so that it lasts all year and not just for a week……..just a thought🙄

Ooooo gone right off piste havn’t I…..😳……..anyway back to yesterday……..

After the lovely cold frosty snowy week just gone, the weather has changed it’s mind again and we’re back to milder weather. Yesterday was rainy and grey…..but the smiley face of Sarah turned up at my house at the arranged time.

We chatted happily and had a catch up on the way. There’s always one junction where I close my eyes as the village roads meet the main road into Hull……..and it can often take forever at rush hour to get out….but to our surprise I didn’t even have to close my eyes as a gap was waiting for us and we were both taken by surprise…..luck was really on our side……🙌

We arrived at Trust Headquarters and Sarah made me a cuppa while she then got all her bits together.

We trundled over to the lecture theatre, not knowing how many nervous first day faces will be waiting for us.

The Chief Exec, Michelle Moran, speaks first and then it’s our turn to follow her in……….

We went in and this month they were a very smiley friendly bunch. Some months they’re all so nervous  there’s just silence from start to finish – always very strange, but today I could tell they were a nice bunch.

Sarah went through her slides saying how good we were in this region but needed still to do so much more. There’s so many projects happening at the moment in Humber for lots of conditions as well as dementia which is always nice to hear.

Then it was my turn to finish off. I ask them at the beginning to:

“Imagine yourselves being given a diagnosis of Young onset dementia. Your life falls apart, you feel worthless and of no use to anyone any more……”

And then go on to talk about the impact research had on my life post diagnosis.

They were a lovely bunch and were very generous in their applause. One person said how she’d heard me on the radio last year 😳 I then took the opportunity to ask for a piccie for my blog since they were so friendly and they were all up for it.

All finished, Sarah then surprised me by taking me a different way back via the café…….they’d only been baking cakes at the weekend to sell to raise money for my Skydive…..

And had put a collection jar and details of my fundraising page 🥰

How kind and lovely of them all and then 3 more of the team arrived so another opportunity to ask a random stranger if they’d mind taking a piccie 🥰

What a lovely start to a Monday. Smiley new starters in Humber Trust and a cake sale to raise money for my Skydive……I’m soooooo lucky…….

The Moment…….Poem…

It was my birthday last week and I received so many birthday wishes from people I’d never met before, some total strangers who happen to see it on Twitter but who were kind enough to still send a greeting and for some reason these words popped into my head…..

Have you ever stopped to Wonder?
Have you ever stopped to Stare?
Have you ever stopped to Listen?
Have you ever stopped to Care?

How often in your lives
Have you wished for time
To run away
And become the future?

To wish for that weekend
To wish for next year
To wish for that holiday
To wish for the future to become clear?

Well now, I never wish
For time to fly
As the future holds
A me I fail to recognise

No matter how busy your day
Just make sure you stop
and look and listen all around you
And enjoy that moment and smile

Because in the blink of an eye, the moment will be in the past………