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…..


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 <>


About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

12 thoughts on “Guest Poem………

  1. Wow! Thanks for sharing, Wendy. I shall contact Barbara, as this shines a light into what may often be a shady if not dark place.

    Liked by 1 person

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