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A Year On….

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It’s just over a year since A Last Journey was published and it’s been quite a year. I’ve been busy giving talks and readings all over Scotland to dementia groups, carers, Meeting Centres, the University of the Third Age, and Probus. I’ve been on the radio and taken part in an online seminar at Dundee University.

Setting up ready for a talk

My most recent talk was at Probus in Longniddry with a very receptive audience.

I’m also a member of Edinburgh Festival Theatre’s Focus group for their dementia programme and discuss and suggest ideas with them. I also write the Hidden Lives column for their DementiArts magazine.

And to add even more, I’m part of the Haddington singing group who entertain at care homes and other social groups throughout East Lothian.

No wonder it’s been a busy and very satisfying year!

‘A Last Journey’ Launched!

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This is the story of our lives abroad and home in Scotland before Lewy Body Dementia got its claws into Bill and destroyed his life.

The launch was held at the Festival Theatre, Edinburgh where friends and family gathered to hear me talk about the book and how it came about. Alex Howard, Creative Engagement Coordinator for the theatre was the emcee and introduced the readings and took questions from the floor.

A Last Journey is available from https://lumphananpress.co.uk/bookshop/ or from Amazon.

Ann Burnett’s Memoir ‘A Last Journey’ Unveiled

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Award winning writer Ann Burnett is releasing her memoir A Last Journey, at the Festival Theatre on October 15th 2024.

Age Scotland have given Ann an award towards its publication.

This is a touching, funny and moving story of Ann and her husband Bill’s life together before Lewy Body dementia took him over, and her struggles to look after him until his death.

Dementia. It wasn’t what the couple expected at all. They had ‘imagined themselves doddering along till their eighties’ but dementia had other ideas.

Inveterate travellers, living abroad and experiencing life in different countries, they suddenly became confined to their home because of dementia and lockdown  

A Wee Taster

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Just a wee bit from my memoir, A Last Journey, to be published in October. It’s from the introduction.

Our Golden Wedding in Dumfries House, 2016

My husband, Bill, and I imagined ourselves doddering along till we reached our eighties. Beyond that was a mist, fading away. But in our mid-seventies all that changed. Bill was diagnosed with dementia.

‘I’m shocked,’ he said to the consultant. ‘I didn’t think anything was wrong.’

But I knew. For several years something had been niggling away at me. Something wasn’t quite right. Forgetfulness you can put down to ageing, but this was more than that. For our Golden Wedding in 2016, I’d bought printed badges bearing the names of all our guests, even having different-coloured backgrounds denoting whether they were family or friends. I thought it would benefit our guests, coming as they did from a variety of our interests and activities, even including Bill’s new family members, who he’d only discovered the previous year. But really it was because Bill couldn’t remember names.

I even moved us across the country to be nearer our sons ‘just in case’. It took me until 2019 to persuade him to visit the GP and at least ask about his ‘problem’.

What is dementia? Alzheimer’s, the most common form, is what people usually think of when dementia is mentioned. But there are over 200 types of dementia and more may well be discovered. Every patient is different; they have their own unique symptoms and presentation of the disease. And the symptoms change and evolve as the disease progresses.

At the moment there is no cure. Every few weeks there is a media fanfare as yet another new miracle drug is claimed as the panacea for dementia. What they actually mean is that the drug might slow down the progression of the illness if it is caught early enough. A big if. Getting an early diagnosis is not easy these days. Doctors seem to be loath to actually do all the tests required to be able to say with any certainty that dementia is present. Is money and lack of resources the problem?

And dementia is terminal. It may be a long slow deterioration or, as in Bill’s case, a rapid gallop towards the end. For him, there were almost exactly three years from diagnosis to death. 

But instead, I’ll focus on Bill’s drive and determination to continue living, despite a doctor’s prognosis which gave him only 18 months, as it was in Bill’s nature to put his head down and charge at whatever he faced, however much it came back to knock him down again and again.

There are always two people involved in dementia: the sufferer and the carer. Much is spoken about help for people with dementia, but help for carers is much thinner on the ground. Although dementia sucks the personality out of the sufferer, it reduces the carer as well. Weeks, months, years of caring leave the carer in a state of limbo, neither a partner nor a professional carer, stuck between two states of being, unable to participate fully in the activities and hobbies they enjoyed before, with only the knowledge that ahead lies the death of the loved one and an emptiness beyond.

It’s Coming Soon…..

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I’ve written a book. A memoir all about the last few years when instead of writing I became a carer for my husband Bill. He was diagnosed with Lewy Body Dementia in March 2019 and died in March 2022. Only three years it took for that terrible disease to kill him.

I stopped writing during those years. I had neither the time or the energy to do it. My life was subsumed into caring for Bill. I tried to get as much help for us as I could so I joined Dementia Research. A student contacted me looking for people she could talk to about having carers in the home so for six months I had sessions over Zoom when she asked me about how things were going. I talked. And talked. She recorded our sessions, transcribed them and sent them to me after she had completed her research.

I also wanted the professionals who were dealing with Bill to be aware of the person he’d been, and not to regard him as just a poor old soul so I wrote a brief summary of all the things he’d done, his sporting achievements, the countries we’d lived in and the sights and experiences we’d had as a family and made sure there were copies of it in all his medical files.

After Bill died, I read the student’s transcripts over and realised how much I had forgotten about those terrible days. I wanted to recall other aspects so I started jotting down brief paragraphs about trying to find food that he could eat, about the sheer exhaustion of it all and what it did to me, about the carers who came to help, about the guilt and the sadness and the laughs. Yes, we even managed to laugh at times.

Then there were the diaries of our travels that I found when I was clearing out, the letters I’d sent home, the articles I’d written for an online site dealing with countries to see and visit. A tremendous amount of material and the only thing to do with it was to shape it into a book.

It took me over a year and many tears and much frustration but it’s now finished. Hopefully it will be published in the autumn.

Can’t wait to share it with you!

Getting the Old Brain into Gear again!

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I’ve been writing again! The incentive was the Scottish Association of Writers conference programme setting out all the competitions to enter if you attended. So step 1, I booked my place for the 2023 conference in March and step 2, began writing. I won’t say what I wrote and in what categories I submitted (ok some are old efforts freshened up and edited) as it’s all anonymous and we won’t hear the results until the actual conference.

Not only has it got me back writing, but I’m looking forward to meeting up with friends I haven’t seen in ages and wondering if the room parties are still part of the weekend. How many folk can you squeeze into a bedroom? And how many bottles and packets of crisps can be consumed? And that’s on top of packing away glorious meals three times a day along with elevenses and afternoon tea.

And then there’s the talks and the discussions and the workshops! A stupendous few days which set you up for the rest of the year.

I’ve also got myself a wee job as a researcher for the Dementia Friendly podcast project at the Festival Theatre in Edinburgh. I interview various people who work in the theatre or who are associated with the DementiArts programme. I summarise it and hand it to Willy, the podcast presenter who uses it to conduct a recorded interview with them for the podcast. You can listen to the first one using the above link.

I also write a column for the DementiArts magazine that the theatre brings out. It’s called Hidden Lives and I tell the stories of people living with dementia and what surprising and wonderful stories they are.

I’ve also booked a place with a conference on How to Get Published run by the Writers and Artists along with the Open University in Edinburgh in March. Another chance to pick up tips and ideas as well as doing a bit of networking.

And if all that doesn’t get me started, then I’ll give up!

Beginning the Journey Back

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It’s been almost two years since I last wrote for this blog, in fact wrote anything at all. A stretch of time which was taken up with caring for a dear loved one until the end. But now I’m beginning another part of my life and gradually, oh, so gradually, I’m starting to write again, not long involved pieces but short articles for various newsletters on a subject I learned a lot about over the past two years – dementia.

This terrible, incurable illness is no respecter of persons, waiting generally until old age before visibly striking. But over many previous years it has been insidiously creeping through brain cells and destroying them. Looking back, I can see many tiny signs that we missed, symptoms that we dismissed as one offs, as typical of the ageing process and pushed aside. Not that anything much could have been done as like many neurological diseases, dementia in all its forms is incurable. It is terminal.

Depending on your “luck” you can have it for many years, or it can rampage through the body in no time at all. We weren’t lucky. Our form of dementia took only three years from first diagnosis until death.

But dementia has also given me a way back into writing. Capital Theatres in Edinburgh have a dementia programme, ensuring that their premises and performances are as dementia friendly as possible, and publish a dementiArts newsletter 4 times a year. I have been writing a column, Hidden Lives, about the previous lives of those now living with dementia: a musician, a potter, a marathon runner, an acrobat, an inventor – all sorts of people with amazing and fascinating stories to tell of what they’ve done and been.

I’m also still very much involved in our local dementia group and write about our activities and outings. Life doesn’t stop because you have dementia – you only need to read Wendy Mitchell‘s blog to realise that!

So back to the keyboard and get busy! I wonder if the past two years have enabled my writing brain to lie fallow, to take a break and let what happened percolate through my mind to emerge at some later date as a rich harvest of subject matter – if that’s not mixing metaphors, overwriting and generally producing purple prose!

How have you managed to put your life together again after a loss, an illness, a change of circumstances?

The Times They are A-Changin’

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For almost two years now, we’ve had nothing but change in our lives and it will continue.   Some changes are good and invigorating, others less so and difficult to get our heads round. But we persevere and take the good with the not so great. One result is that blog pieces and posts have diminished somewhat as time and energy have been taken up by other responsibilities.

Another result is that my writing has changed too. At the moment, I’m publishing short pieces, articles on the history which our new area is steeped in, and which are being published in a variety of magazines and online.

magazine cover

The American magazine, The Highlander, popped through my door and I was delighted to find I had two articles in it. One, Orkney’s Ancient Palaces, was the very first piece I sent several years ago and which gave me a fillip when it was accepted, and the other, on Christian Maclagan, was a more recent one that I wrote. Christian who? I hear you say. Scotland’s first female archaeologist, no less, and a redoubtable woman to boot. Like many other intelligent and learned Victorian women, she was ignored and her researches and findings were disregarded.  She was also denied full membership of the Society of Antiquaries, a situation she was extremely angry about.

Recently, Scottish Field magazine published a piece about Susan Ferrier, another clever Victorian lady writer, now almost unheard of, and online, a piece on the Cadell family of Cockenzie House, a few miles away from where we now live.

What’s in a name – the history of the Cadell family

The men of the family were an interesting lot, entrepreneurs, artists, publishers and actors, and of course the inevitable black sheep who made a name for himself in Australia and who came to a sticky end.

Cockenzie ladies

The unknown women of the Cadell family  (c) Cockenzie House

But what of the women of the family? More Victorian women who live on only in the photographs left behind and in a slim volume of writing penned by one of them? It is hoped that funding will be available to allow research into their hidden lives, through hopefully, diaries, household accounts and letters.

On another front, I have bought back my rights to my two ebooks and will republish them myself at a later date with revisions and new covers. Watch this space!

And a new tack – I have written a song! A singing group we attend is run by a very talented musician who has composed a piece just for our group and who asked if I would write the words. It will be premiered at the Gathering, a getting together of the many groups around East Lothian supporting those with dementia at which we will be singing. I hope they like Morning, Mrs Magpie!

Morning Mrs Magpie,
Here comes the day!
You bring a fresh start to life and living again
Good times are on their way.
Laughter and sunshine
Embracing me.
Voices uniting in music,
Friendship and harmony.