The Thames Path (warning - contains emotional material....)

And though I have the gift of prophecy, and understand all mysteries and all knowledge, and though I have all faith so that I could remove mountains, but have not charity, I am nothing.....

Deathbed

I have said much of this before.... I have wrought my emotions to the core.  My grief, my sorrow, my sense of loss and all that have been offered to my friends, and I know that life has to go on, and that everyone else has their stories, their loneliness, their pain.....

When you read this, I may be near Oxford, or in Oxford, or at home.... My intended walk from the source of the Thames into and around the city of Oxford may have happened, or perhaps may have been aborted, though the intention was always there....

Sarah, Amanda, Hannah

[And the intention was/is?  Ed]

Laste in the day

Despite some health problems, and with three score and fifteen years on my back, my intention was to walk a mile for every year my late wife Amanda (nearly) lived, and, with enormous gratitude to my close friend (who assisted and encouraged the project), it seemed opportune to walk the Thames Path from the source to approximately Oxford..... 

Monte Amiata, some thirty years ago

Amanda was my world, and is still there in my life and very much in the lives of our daughters, Hannah and Sarah. She was a sweet, caring person, loved by all she met, and could not have been a better mother and wife. She was never ill, and lived what can only be categorised as a healthy life.

Monte Amiata, about forty years ago

Sadly, in her mid fifties, something went wrong, and she was afflicted by what was eventually diagnosed as Frontotemporal Dementia (Semantic Variant).

In the Abbruzzi, when all was well

Little did we realise, then, what this meant, so gradual was the decline, but now we look back and think of our past:

Our wedding day with the Clifton Suspension Bridge behind us

The girl I didn't even know:

With Vidal Sassoon in Rome

Was to become my partner, my wife, the mother of our children, and my companion until death us did part.....

And there you go....

From this:

To this:

In the wink of an eye, without so much as a 'scuse me.....  Here we are, in Italy, knowing that things weren't right:

Beginning that slow slide towards oblivion that some call retirement.....

And then, moments later, you are wondering what happened, why you cannot understand each other, where the time went, how a loving god could be so cruel.....

Don't get me wrong.  Amanda was lovely to the very end.  She knew things were falling apart, but she didn't complain.  She faced the awful loss of language and control and independence, and the loss of all that went with the life she had had a right to expect, and she folded down, rather as a bright and happy birthday balloon will do when it is spent....

Gradually, almost gently, falling apart before our eyes.

A terrifying decline for a sentient being.  From mother and lover, to incontinent child.....

Needing to be wheeled from flower to flower:

And then looking at you, incapable of speech, her eyes crying out for mercy, for understanding, for peace......

This is why, in my madness and in my own decline, I am hoping that when you read this I may have walked some sixty or seventy miles of the Thames Path.  I want to draw your attention to how lives can be affected by the stealthy creep of dementia.  I am not competing with anyone.  I know there are thousands of worthy charities out there that cry out for support.  I know that many people in many parts of the world are suffering at this moment with the pains of war, the terrors of political repression, the horrors of starvation and disease.  

My story is nothing.....

But it is my story.

Should you wish to know more about the National Brain Appeal (which provides much-needed funds to support The National Hospital for Neurology & Neurosurgery and the UCL Queen Square Institute of Neurology – together known as Queen Square. This is one of the world’s leading centres for the diagnosis, treatment and care of patients with neurological and neuromuscular conditions. These include stroke, multiple sclerosis, brain cancer, epilepsy, Parkinson’s disease, and dementia) please see:

https://www.nationalbrainappeal.org/

And should you wish to support me and my family, and help others in the long term, then please click on this link:

https://www.justgiving.com/page/richard-gibbs-8?utm_medium=FR&utm_source=CL&utm_campaign=lc_frp_share_transaction_fundraiser_page_donation_received_-_nth_donation

******

Dedicated to Amanda and to Hannah and to Sarah

And also to my friend, who is helping me through all this, her life having been similarly affected

*****

PS, from "Your Local Paper", May 13th 2026:

The Turning World

Looking for a sense of perspective.....

Birds scrawl across the sky above the muddy flats of the Wash, dots on my vision, each to his or her own.  Distant trees and pylons speak of the old and the new.  

Conflated ideas of time rise towards the clouds.

It is the first time I have been out for three weeks.  My world is flat and empty.  It has rained.  The winds have thrashed against my walls and the roads have been under water.

A brief respite and I walk down the broken concrete path towards the flood bank. To one side I see a Muntjac pointing her dark eyes at me.  

A Marsh Harrier strafes the muddy field for hapless prey.

Along the hedgerow the blackthorn fires its salvoes, frosting the scrub in thousands of bright flowers, luring sleepy bees from their winter repose.

In the lagoon I spot a lonely young male goldeneye, diving amongst a waggle of heavy greylags.  The best is yet to come; I wish him luck in his watery life.

And not far away a pair of wigeon float along, bobbing sedately in the security of their partnership.  

The pink-feet have gone from the Wash now, making their ways to the deep north.  I miss their chattering skeins at dawn over the village, families of geese that whiffle together to the sugar-beet fields inland.  And I miss their returning flights in the dusk, their voices quieter as they slip toward their sleep. 

But there are plenty of waders out on the mud and at the tide line.  Bar-tailed Godwits:

Swarms of them, flickering above the Shelduck, Oystercatchers and Curlew that are not quite so flighty.

It is peaceful here.  Many times I walked this way with Amanda, and last Autumn I brought her here in her wheelchair, no longer able to support her own weight.  I am sad as I watch the world turning, as the cycle of life revolves.  But that is the way it is.  I am not alone.  We will all lose someone, or they will lose us.  There is no other way.

I know that.

But it doesn't make it easier.....

The clouds build up.

And then they will disperse.

At the still point of the turning world. Neither flesh nor fleshless;

Neither from nor towards; at the still point, there the dance is,

But neither arrest nor movement. And do not call it fixity,

Where past and future are gathered. Neither movement from nor towards,

Neither ascent nor decline. Except for the point, the still point,

There would be no dance, and there is only the dance.

T.S. Eliot

Burnt Norton

And as the darkness intensifies, peace comes dropping slow.  

Take my hand. 

 God is love.

Or maybe, Love is God.....

Amanda Jane Blacknell Gibbs

A nice picture of a smiley me.....

My little squirrel is snuggled up in her drey, safe in the arms of her god.  After a wonderful, though sadly not as long as we hoped, life, she has finally given in to the torments of dementia.

Around twelve years ago, during her menopause, Amanda suffered from an auto-immune infection and I later learned that this could well have triggered her dementia. Subsequently she began to have trouble with finding the names of things. It became frustrating and we consulted our GP, who referred her to EMDASS (Early Memory Diagnosis and Support Service - Older People's Mental Health Services in Hertfordshire, where we lived at the time.)  

Amanda was visited at home and asked to complete a number of tests and then we were invited to see a doctor who specialised in ‘older people,’ (Amanda was then about 58).  He decided that Amanda was suffering from Young Onset Alzheimer’s Disease, and prescribed donepezil for a year.  He told me that the problem I had, was that she might live for twenty years.....

 

I made a note that day, Friday 15^th October, 2012.  

Diagnosis – Amanda has Early Onset Alzheimer’s.  She returns to work.  Later she says if she had not got her faith that she is being taken care of she would have been in tears all day.

         

I think we are both in shock.  The details are unimportant.  The fact is this is a ‘life sentence’ and may also affect the girls: their future health may be shadowed by this.

 

In 2014, although Amanda was still working as a Teaching Assistant in a Preparatory School, and was driving and, to all intents and purposes, living a normal life, it was clear that she was having serious problems with words and I was not convinced that she was suffering from Alzheimer’s.  The doctor referred her to a neurologist who arranged for her to have an MRI scan.  This showed asymmetric (left) temporal lobe atrophy with prominent inferior loss and relative preservation of the left superior temporal gyrus, in keeping with a diagnosis of Semantic Dementia.  Following this, and further exhausting testing, including a whole day at the Royal Free Hospital in Hampstead, the doctor insisted that Amanda should discuss her diagnosis with her Headmistress.

 

Prior to that meeting in November 2014, Amanda made a few notes which she gave to me at the time:

 

·      I have recently had to have a Head Scan at the Hospital and then some further testing.  I have recently been told that my left side is a little bit narrow! And I have been told I have ‘semantic dementia.’

·      I feel very well!

·  I did complete my First Aid Course Training!

·      I have no illness or difficulty.

·    I read Bible lessons every day and know that God is with us all the time!

·     I do take some medication (Donepezil) but I have no problems and am very happy to be continuing working here as a T.A. and doing Pre-Prep After School Care.

·   I did mention that I thought I would be retiring at the end of the year, which I will then do.

 

Amanda continued working at the school until the summer of 2015, when, reluctantly (she would have no pension for some years, and she loved her work and her colleagues and the children) she took early retirement.

 

Amanda built up a series of pictorial aides.  She cut pictures from magazines and papers and stuck them on sheets of A4 paper, organised into logical groups.  So, for example, she had pages of farm animals, then pages of wild animals, then of birds.  She had pictures of her friends, with their families and details, to remind her if they called.  She had favourite foods so that she could interpret menus in restaurants.  And then she had maps of where we had been on holidays, so that if someone came to see her, she could get out the map and show pictures of places.

In addition to this, she began meticulously labelling items around her – her bedside clock, for example, had a little label saying “clock” stuck on the back.  She had made explanatory cards, which showed her what the things in the bathroom were for: for example, “Passion body spray – in summer times I have to add, to clean this up, to keep it well,” with a little drawing of a girl with her arms uplifted; an interdental brush has the label, “This is useful for my teeth!” and one sheet is headed, “Things to take abroad!” and has neat little sketches accompanied by notes.  One picture is a self-portrait with an arrow indicating “This is my eyebrows (and I clear these things each day!)”  

A doctor at The National Hospital for Neurology and Neurosurgery in London monitored Amanda.  We went to see him every six months at his Cognitive Disorders Clinic and then in 2017, in the autumn, following repeated advice from that doctor, Amanda had an assessment of her driving.  That year she was deemed to be safe on the road and so kept her licence, and the independence this accorded her.  She had been driving for forty-five years and she loved her little car but in November 2018 she had to be reassessed and this time the assessors had to take her licence.  Amanda could not grasp this and for perhaps the first time in our married life I found her becoming emotionally upset.

 

She became convinced she could buy another car, and she would get me to take her to car dealers, carrying a bag containing several hundred pounds cash and once she got herself to a Jaguar Salesroom and the concerned staff called the police to bring her home.

 

On October 14^th 2019, we saw another doctor in the London clinic, who reported that Amanda:

remains in good health and positive spirits.

However, she has very little comprehension now and [her] verbal output is limited to stock phrases.

 

Overall, it is clear that things are progressing slowly.  This is naturally stressful; however, Mr Gibbs and the family are obviously supporting [her] very well......

 

In many ways, our life could have been worse. Amanda needed attention, and was no longer able to cook, but she could dress herself and could take herself to the toilet and, providing I monitored the temperature, have a bath.  She watched television, and we still went swimming twice a week and I would take her for a country walk every morning, rain or shine.  I managed to employ agency carers who gave me a little respite.  It wasn’t as I had hoped our retirements would be, but it could have been much worse.  

Then came the pandemic and the world (with one or two exceptions) shut down.  We could no longer have visits from friends or relatives and for someone like Amanda this was crushing.  The swimming pool had to close – and she couldn’t comprehend it.  In addition, she could no longer attend her beloved church on Sundays. We were locked down, locked in, isolated, and, to a certain extent, frightened. Amanda couldn’t amuse herself by reading, for example, though one thing she did like doing, as an ex-primary teacher, was cutting and pasting, and she would spend hours with her glue sticks and coloured pens, scissors and cards.  I discovered later that she had made cards for Christmas and Birthdays for all her friends and family, neatly packed in envelopes and then in plastic wallets and then in boxes, labelled Christmas (or Birthdays) 2020, and 2021, and 2022.....  all the way up to 2029!

 

For various reasons, one of which was the need to have more space for family and carers to stay with us, I arranged to move, and in January 2021, just before my seventieth birthday, with the pandemic still keeping things closed, we moved to Snettisham, a village in Norfolk. 

 

Amanda was very confused, and for what seemed an eternity she wouldn’t settle.  She had her bag with her precious things (glasses, iPad, phone and wallet) and she sat at the foot of the stairs with her coat on, sporadically getting up to try the door.  

 

I fairly soon managed to engage some help from agency carers to give me a little time to devote to sorting the house out.  But Amanda was not settling and we had to resort to diazepam, which was a mistake, as it caused her to have a horrendous accident in her bathroom.  Medical intervention changed diazepam to lorazepam to help calm her, and then another doctor prescribed memantine.  Fortunately I was able to employ two independent carers as well as the agency staff, which helped enormously.

 

By November Amanda had become doubly incontinent and was in need of constant supervision.  She could no longer communicate, and she was getting up in the night and sometimes falling.  A doctor managed to prescribe her melatonin, which did help, but then the prescription was disallowed as NICE had not licensed it (although I did manage to get it legally from America, Australia and Italy).

 

I began to look into Care Homes while trying to look after her at home.  On May 21^st 2022 I noted in my diary:  

Memantine, risperidone and zopiclone with supper then to bed by 6.30.  Reappeared at 7.00 ish so gave her a drink with a second zopiclone.  Changed pants and put her back to bed......  Half an hour later going downstairs again (unsteady).  Gave her water and helped her back to bed (very unsteady).  Then ok til 4.37 am, down for water, changed pants.  Then up again at 5.13 – made it back upstairs unaided.  7.30 am fell getting out of bed.

 

Reluctantly, in September 2022, I arranged for Amanda to become a resident of a nearby Care Home.  I felt horribly guilty for letting Amanda go, but, as friends and experts advised me, I needed to try and reclaim a little of my own life, while that lasted.  

 

Over a year later, we had our routines and I was still taking her out in the car, but she could no longer walk, nor talk, nor feed herself and she was often very sleepy.  I lift her into a wheelchair and we take fresh air, but otherwise she is simply wheeled from bed to breakfast to the lounge to lunch to the lounge to supper to bed.  She is cared for and cleaned but it’s not great....

 

I have a sheet of A4 paper covered in Amanda’s neat handwriting in black ink.  It is undated, but I know she wrote it many years ago.  She has put her initials in the margin – AJBG and written beside that “ABeeGee!”  

 

If (& when!) it’s time for my funeral don’t really like that word so could it be a celebration of life around here please, there are a few suggestions which might be helpful to whoever has to put it all together (Good luck to you!!)

 

A nice picture of a smiley me would be good.

Lots of thanks for such lovely times, so much fun experienced, very dear loving family (including furry members) & very kind friends & colleagues throughout life.  Wonderful times in Italy & here!

 

 

 

 

Note that I will have moved on somewhere & look forward to seeing you all there at some time later!

 

(Dear family....)  Try not to feel sad, but happy & grateful for all we’ve shared & learned together & know that God is always guiding & taking care of everyone & showing everyone where to go at the right time & sending love

 

Everlasting arms of love are beneath, around, above

God it is who bears us on, His, the arms we lean upon

The joy that none can take away, is ours.  We walk with love today.

 

Some nice happy hymns/songs

 

Lovely Italian music at the start – don’t like coffins coming in in silence, and also at the end.

 

The lord’s prayer somewhere.

 

Whatever else suits you.

 

Try to make it a good, happy, warm, time for support for those who might need it.

 

In loving memory of my dear wife

Amanda Jane Blacknell Gibbs

March 5th 1954 

to

February 1st 2024