Category Archives: guest blog

Guest Poem…….by Bob…..

Following on from yesterday’s Guest Poem by Bob, here’s the final poem that Bob brought for me to read…….before the poem he wrote the following:

Each new day I am increasingly conscious of becoming less able to be ‘there’ to move the smallest mountains or even be close by to make idle decisions. Thereafter I find myself in constant consideration that I am seen by others as unaware of who, what and why I am.

My response is only to help confirm this appraisal by withdrawing and not contributing to the interaction in case my ‘viewpoint’ doesn’t coincide with that of those around me.

Herewith, an attempt to bring this together……..

When I think I’m ‘on track’
In total control,
Arrives a ‘black hole’
Mocking my mind!
I’m a lost
Random soul!
THEN
Lock down your mind
Empty your head!
Start thinking again;
Mind what you said!
HENCE

Be who you are!
Engage and delight!
Make love, laughter, living,
Everlasting bright!

For wherever you are, whatever you do,
No matter the question,
The answer is YOU!

Guest Poem……by Bob

Last Thursday at my last book event in Beverley, two people came up to me afterwards to chat; Bob who is living with dementia and his wife. Bob had brought me two poems to read along with a speech he’d written. Poetry is his way of relieving the frustration of dementia. He didn’t bring them for me to publish, he simply wanted me to read them.

However, they are so wonderful, that I asked if I could share them with you and after much persuading Bob agreed. His wife was over the moon that they would be published here and I imagine she is the ‘Sue’ in the poem😊

So here’s the first and the other will be here tomorrow…..

Poetry in Promotion……an exercise in exorcising!

Perhaps I wouldn’t choose to be
The me I am that now is me
But on the other hand, my mind
Can usually, make its way to find
An ‘outlet’ that will cause relief;
Re-establish self belief.

And then there’s Sue
And others too
Who feel and ‘know’
And see me through

So,
Through the ‘pictures’ smeared and blurred.
To have ‘self sorrow’ is quite absurd!
Then,
When I taste that ‘loss’ in me
I exorcise through poetry…………

Guest Blog……’VivifyMe’

Today I’d like to introduce you to a wonderful young friend of mine, 11 year old Arnav. He is one very special young individual who is trying to make a difference for people living with dementia. Please read and be amazed at his talent and his very proud mum, Manisha.

Wendy has kindly agreed to publish our blog today. Thank you for all your support, help and well wishes.  

Vivify means ‘enlivening something’. VivifyMe aims to enliven lives of older people – particularly those living with mild cognitive impairment and early dementia. With the well wishes of everyone who knows Arnav, VivifyMe has been selected as one of the 9 finalist in Challenge Dementia Prize Essex and has also been awarded as London Mayor Scientist Award.

VivifyMe brings together different evidence based approaches for dementia into one affordable and personalised solution. Dementia is already one of the biggest health and social care challenges facing local health economies across the UK and world.

There are a number of assisted living solution for older people. VivifyMe builds on the proven approaches and methods; and brings them together in one easy to use solution that can be personalised for better results and outcome.

VivifyMe was developed by  Arnav with support from his mum, Manisha, when he was 9 years old after he learned that his grandfather had developed dementia. When we tried to search for products, they often had just one feature in them and were very costly.

He has always been interested in using technology for solving problems. He won Tech4Good People’s Choice and Winner of Winners awards in 2016 for his asthma solution – Asthma Pi.

It was initially developed on a Raspberry Pi (a small and basic computer developed to promote the teaching of basic computer science) but to make it even more accessible and affordable, the main features have been developed as an app to be used on a tablet.

It uses touch screen and voice assisted prompts, to provide an easy to use interface.

It is helpful for current dementia patients but would equally be well suited to future generation, who are even more used to using touchscreen based devices like smartphones.

It allows for the solution to be customised by carers to ensure that it delivers a truly personal experience and supports carers in looking after their family members.

We believe that it can improve the quality of life, slow cognitive decline, promote independence and well being.


Arnav😊

 

Guest Poems…..

When I come across playmates writing beautiful pieces they can’t share I like to use my blog to share them on their behalf as it’s so important to hear ALL voices.

Today is one such moment.  Jackie and Liz are 2 dear friends who have been together for years. Liz now has dementia and she wrote these poems for Jackie….

TO JACKIE

I want to tell you how it feels
To be cheated out of reality
Dementia tells lies to my mind
It takes away the beautiful truth
And leaves in its wake many hurts.

I want you to know I’m still aware
How dementia can trick me
My love for you will never fade
Even when I behave badly
But it leaves sad memories behind

I would like to say a loud NO
Whenever it’s tricks and lies deceive
To be able to answer NEVER NEVER
And know I’m assured I’ll be ok
And that it will leave without taking me.

This was written after a bad spell of “suspicious mind” and not trusting my lovely Jackie.
We’ve been together 25 years and this is a new behaviour…..damn dementia
Got it off my chest in poetry.

And this last one….

MORE GOOD DAYS

One day without a diseased brain
Would be enough for me to enjoy
One day at a time

But make it two and it could be
Almost like it used to be
Just being myself

If 3 days could be had
It wouldn’t be as bad
I could live life to the full

But if a cure could be found
I would be on solid ground
My life would know no bounds
To enjoy more good days

Bridge over Alzheimer’s…….Guest Poem……

On Friday I had a lovely email from a 12 year old called Zoe who had just finished reading my book. She had written a poem for me.

It was sooooo amazing that I asked Zoe and her mum if I could share it with you all. Luckily for everyone, they said yes. So here it is……..Remember, this talented poet is 12 years old……

Bridge over Alzhienr’s

Alzheimer’s continually,
Springs upon people,
Young and old,
An unexpected storm,
Takes memories away,
Takes happiness,
Takes,
Memories fondly looked back on,
Smiling faces in polished frames,
Now gathering dust.

Then family,
Friends,
Sadly watching,
Caring,
Pits in their hearts,
Tears threatening to fall,
But they must be happy,
They can be happy,
They can smile through the pain,
To create new memories,
That take longer to fade,
Living for the moment,
Taking life as it comes.

Holding hands,
Then,
Looking into their eyes,
Seeing misty glances of confusion,
Or,
Seeing bright eyes of a memory,
That they caught,
Floating,
With a sturdy grip,
Determined not to lose.

They don’t want to seem,
‘Vulnerable and alone’,
They aren’t.
They don’t want to seem,
‘Lost and confused’,
We can help,
We cup our hands around them,
Stopping them,
Slipping too fast,
We are their bridge,
Over troubled water,
Even though,
They can,
With courage,
Swim.

Guest blog by Billy the Cat……..

Hello, Billy here 😺

I’m watching helping Wendy in the garden and she’s gone off and left her iPad for me to sneak a cheeky blog………..

It’s been a while since Wendy’s had the time to potter in the garden with me due to the success of my her book. Obviously it was my part in it that sold the book, but I’ll allow her to take some of the credit.

I hope you’ve all had the wonderful wild life catching sunshine of late. I’ve been in and out all night trying to tell Stuart and Gemma how wonderful it’s been in the middle of the night, but for some reason they weren’t impressed with me……can’t imagine why as it’s the best time of the day. They then complain when I sleep all day, when they want their cuddles, but they can’t have it all ways…..

Anyway here I am today, surveying Wendy at work……I can see the bird feeders have just been filled too, so there maybe a little treat in store for me us as the bird life joins us.
Oooooo yes I see one now up in the tree – excuse me a mo……

Missed it!

What better way to spend a day than lazing in a patch of shade while Wendy does all the work……..oooooo, I can see her coming back…..maybe it’s time for my sorrowful look by my bowl, after all it’s at least half an hour since she last gave me a few biscuits……😹

After all I do believe it’s a well know saying:

Dogs need care, Cats need servants……….

Over to my daughter today….

The Alzheimer’s Society recently asked me to write a guest blog recently but also my daughter Sarah wrote one – a daughters perspective on support. So today, I thought I’d share the link, because we always say that when we get a diagnosis of dementia, our family and friends get the same diagnosis, and need equal amounts of support, advice and education…..

https://blog.alzheimers.org.uk/personal-stories/wendys-story-part-three/

 

Guest Poem by ‘Mr Watson’……

A couple of weeks ago (I think!) I introduced you to Barry, who writes poetry by the name of ‘Mr Watson’. He lives in Humberside and last time I couldn’t for the life of me remember who introduced us…🙄…but then Alison, from the local research team reminded me it was her😊

Barry’s elderly mum was diagnosed with dementia in 2016 and Barry himself is living with Chronic fatigue Syndrome. Here’s another of his lovely poems……..

Down

When you’re down
there’s no clown
just a frown
It’s a sadness
that comes from within
It grasps and dictates
holds and frustrates
It seems like you never will win.

Yet the days
pass right by
then sun filters through
bringing a warmth
that you feel is but you
the storm clouds are lifted
dawn finally breaks
slowly diminishing
all those heartaches.

So bring on the laughter
may it last here on after
for many it’s the norm
to be lost in a storm
downs not the end
It’s the start of life’s cup
Then onwards and upwards
It fills itself up.

©
Mr. Watson
December 2016

Guest poem by ‘Mr Watson’….

I’m always happy to allow others to show their talents through my blog and was happy to be contacted recently by someone introducing me to someone who uses poetry to cope with the stresses and strains of live. I’m not sure who introduced me to Barry, but his elderly mum was diagnosed with dementia in 2016. Barry lives in Humberside, and is living with Chronic Fatigue Syndrome so my part of the country. Writing poetry helped him cope with both their diagnoses. He says:

’Having just come to terms with my diagnosis made it worse in some ways, doubling the amount of stress I had to deal with.
The poem is about the situation I was in and how I felt at the time when she was still at home alone.’ It’s always good to see and hear someone elses side of the story and I think you’ll agree that this is a beautiful poem.

Barry has also joined the wonderful world of Twitter under @6662gemini (Mr Watson)

The Day Dementia Came

Words are nothing
Without recollection
Just a jumble
As the memories crumble.

Yesterday’s became distant
Nothing’s too blame
In this world of twilight
The day dementia came.

Amused yet confused
The stars no longer shine
To you everything seems normal
All around seems fine.

In your world
There’s much confusion
A cerebral illusion
No hint of doubt.

In my world
All’s commotion
That makes me
Want to shout.

The things you say
Seem so far away
As dementia
Plays it’s part.

Your decline
Creates a sadness
In the chasms
Of my heart.

©
Mr. Watson
July 2017

Guest blog by my daughter Sarah…….

An article published recently in The Lancet Psychiatry by a so called ‘expert’, ‘Doubts about Dementia Diagnoses’.made it’s way into my inbox and also into various other publications. I chose to ignore it as it was sad that a professional could question our diagnosis simply because we have the ability to speak out at events. However, others chose to respond, and the article, in response by William T HU, ‘No Doubts about Dementia Advocacy’ was spot on.

I have no problem with people questioning the process of diagnosing and yes, mistakes are made and each are entitled to their own opinion, but as Hu said, ‘….but meaningful engagement must extend beyond Persons with Dementia feeling like curios and sideshows’

It’s also important for ‘experts’ to remember that it isn’t just ourselves who are saddened and demoralised by such comments. We always say that when we get a diagnosis, our family and friends also receive the diagnosis. With this in mind my daughter felt the need to respond to this article.

Here’s her blog:

I usually try and avoid reading comments on social media about my mum, as people can be so thoughtless and insensitive it’s hard not to take it personally. So I just don’t read them.

However I recently read an article on doubt around some people’s dementia diagnosis. I am aware that mum (and other people with dementia) can appear more well than they are, simply because they are working so hard at speaking out and trying to change perceptions/culture/research on dementia.

Before mum developed dementia, she was a highly organised person who was renowned for her memory (much to my dismay growing up as a teenager!). She used to go running a few times a week, loved to bake, walking miles and miles in the Lake District, she was on the go non stop. And she was a self confessed workaholic!

On top of the fact that mum has had PET scans and vigorous year long neurological tests, I know she has Alzheimer’s Disease and Vascular Dementia because of the changes I am seeing as her daughter.

When Mum gets invited to speak at a conference, she may appear to some like she’s just arrived, enjoying socialising, talking with ease to hundreds of people and then leaves.

Well let me set those people straight.

She has to go by train as she was advised (and made the decision) to stop driving.
Mum may have booked the train tickets herself, or she may have needed me and my sister to help her book them if her brain was having a foggy day.
She may have had to stay in a hotel the night before to orientate her to the place (which can be stressful in itself – new environment, finding the hotel, working out the shower, not sleeping).
She will have spent time printing maps and pictures of the place she is going so she might recognise it when she gets there.
She will have taken time writing her talk (she always writes a new one for each event to keep current and relevant).
She probably won’t eat due to low appetite and there is so much going on, decision making becomes more difficult. So she sticks to cups of tea!
Socialising is challenging especially if there is more than one person talking.
On an average day, her brain starts to tire early afternoon when she could be having a rest at home, but she can’t as she has to face the journey home (and if you read her blog you’ll know Wendy doesn’t have much luck with trains).
And the next day mum is usually more tired than normal because of the energy it took the day before.

I can’t believe I’ve felt the need to write this but some people seem to think they can diagnose someone with dementia just by looking at them or meeting them briefly. It presents in every person in individual ways and the way they deal with it is also unique. Mum is speaking out not only because it raises awareness but also because she is fuelled by a desire for a future cure and improved care. Doing all that she does also slows the deterioration and keeps the brain working. The reality is mum has embraced a terminal illness in the only way she knows how: overcoming its challenges with passion and positivity.

I am not saying all this for pity, that’s the last thing she would want. But just for a bit of respect and sensitivity when questioning ones serious terminal diagnosis.