Category Archives: guest blog

Guest Poem………

I love sharing poems from other people living with dementia as every voice is important and if I can share that voice then that makes me happy.

I was recently sent an email from a lovely lady in New Zealand. She originally lived in Bradford and wrote “I was involved, way back in 1992 when Professor Tom Kitwood there ran his first dementia group” – how amazing…❤️

The other day Barbara emailed me this lovely letter and poem:

“Can I share with you a poem I wrote recently, in order
to try to share with other ‘how it is’, but knowing I could only do it
in advance by sitting quietly and letting the words flow. I found that
what I had written even surprised me, mentioning aspects I hadn’t yet
admitted to myself.”

She asked me to include her email at the bottom just in case anyone wanted to get in touch…..

FACING UP TO DEMENTIA

The time has come to stand still and face my dementia,
Not from the position of “Barbara-who-was”, but instead
That changing, disappointing, rather less exciting and interesting
“Barbara diminished”. All euphoria is gone. Capacity is reduced.
Sadness tinged with fear and doubt wait in the wings.

Life so far has been very challenging but rich beyond measure;
Very few regrets, lots of love and living adventurously, held
Deeply within a Quaker spirituality which makes sense of,
Accepts and allows, guides and develops, challenges and supports
In tune with Andy’s sharing of a life lived as well as possible.

It is not over, yet, but it is changed, in unfamiliar ways.
My life has had its glasses removed so that the focus is unclear
And things disappear, from sight and capacity. And get harder
So that ‘letting go’ becomes a daily necessity in order to
To maintain balance, temper and a sense of unwell-being.

My ‘over-the-top’ approach to life, so enjoyed
Has to be reined in and that is hard to do
Because it is who I have been and I don’t
Want to let it go, because without it
Who will I be? And will I still be loved and valued?

Will I still manage to love the ‘shadow’ of her
Former self that day by day I transform into?
Will I enjoy her and her antics when energy and motivation
Drain slowly away? Will I be able and willing
To release her, at the right moment, to escape the worst?

Will my spirit hold firm, shine brightly and
Hold my hand tightly as I “Let go, let God”
More profoundly, more radically until just
A memory of what has been? It is not
As though I wouldn’t have died anyway!

What do I need for this unexpected journey?
I need to accept and value the me that wakes
Each morning. I need to let others support and
Guide me and stop thinking I know best – the
Very hardest thing, to be vulnerable, quiet, open.

I need to seek and take support, advice and direction
And be aware of my inner voice, that I have trusted
So implicitly and has guided me so well. It may be
A light which flickers unreliably before it goes out.
I need to love and be loved, enjoy, play, be hugged.

Perhaps that poor, abandoned, unloved little girl
Who was me at the beginning can have
A second ‘childhood’, in the light of all she has
Achieved, of feeling secure, blessed, embracing
What comes to pass with positivity, love and acceptance

Barbara <barbaraspoem@gmail.com>

 

Guest Poems from a talented mum no longer with us…

Recently I had the most wonderful email from Tove in Finland after having read my book. In it she told me how her mother was 56 when diagnosed with Alzheimers  and sadly died at 64. In the email Tove said

She was working with the elderly  and helping them to develop their memory. And then she lost her own memory…She was a poet in her spare time and she wrote many poems before it also was taken away from her”

I asked if I could share 2 of them with you as I think they are beautiful…a very talented lady….

Let me stay

among my dreams
and memories
yet a while
Let me see the ocean
in the sunset
and the beach
Let me listen to
grandchildrens laughter
and noice
one more day, please
Don’t run towards me
you cruel reality
Stay
Take
another way
So when you finally
knock on my door
I’m not at home
I’m perhaps already gone
   – Lillemor Eklund 2005
and finally this one…
When I no longer can pronounce my name
When the silence is hanging over my thoughts, like a mountain
Hug me, keep me close
Make me feel safe
Whisper my name
over and over again
Til I know
who I am
Wish me
wild and beautiful dreams
in the darkness
that has captured me
hold my hand
follow me some of the way”
Lillemor Eklund 1949-2013 

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.😊

WEN-DY! ………Guest Poem

On my blog, on Twitter and as I go to different places, I’m lucky enough to meet some wonderful people and make wonderful new friends. Bob and his wife Sue have been to two of the workshops I hold with Cathryn Hart. He’s also a wonderful poet and sent me this amazing poem he wrote after our last workshop……felt very humble and overwhelmed when I read it. It’s now been framed and is on the wall in my memory room…….Hope you enjoy it too…..

Wen-dy day is looking grey,
Wen-dy ‘dos’ don’t go your way,
then it’s time to turn your mind
to Wendy Mitchell.

Wen-dy head don’t seem to know,
Wen-dy worries seep and grow,
then you MUST blow off the dust
with Wendy Mitchell.

Wen-dy evening seems too long,
Wen-dy ‘should-I?’s go all wrong?
then remind yourself the ways
of Wendy Mitchell.

For, without a single doubt,
think of Wendy, you will shout
‘She can do it!
So can I!

She has shown me how to fly!
Take on all those conflagrations!
To exceed all expectations!
I’m here!
I’m whole!

I’m free!
And,
best of all,
I’m ME!’

with love, thanks and good wishes, Bob xx

Guest Poem………

This is a poem by a Twitter and blog friend – Sonya Hill. Her Father in Law has Alzheimers and also a friend of her mum…..Enjoy. I’ll try and pass on any messages you send.

How many times do i have to say please behave if only for a day.
What ever I say or what ever I do never seems acceptable to you.
You sit with a vacant expression on your face, I run backwards and forwards for you all over the place.
Where have I put that this and where have I put that you ask and I reply, I’ve told you a thousand times then you look at me and sigh.

It’s then I cup your face and look into your eyes, it’s hard for you to understand,  and make you realize.
Looking back throughout the years the memories we hold, the love, laughter, and all the stories you have told.
It’s you and me now, a challenge every day, as I gaze into your empty eyes I would just like to say.
I loved you when we met all those years ago, it’s now been more than 25 years and I love you even more so.

You can’t help yourself with this dreadful disease, but we can fight it along the way.
Even though it’s a battle to make you understand, I would just like to say,
Alzheimers, for you, is a lonely life but always remember I love you my darling wife.
If you think of the future and forget the past let’s live our lives as though it’s our last……

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.