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This morning – more than five years after Mum left us – she came home. My sister and I took her ashes to a place she loved to walk to, less than a mile from the family home. The sun shone, a breeze whispered in the trees and we felt at peace. Why so long? I don’t honestly know but it hardly matters.

Mum remains as vivid in my mind today as five years ago but as we climbed the hill to gaze over the village, it was the pre-dementia Mum who was with me, the Mum who loved this place and its people – well, most of them. Dementia takes away but, for me, it can’t take everything.

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Under The Bonnet

“Would you want to know if you were likely to develop dementia?”

It’s a question I have pondered often since Mum’s diagnosis and I still don’t know the answer. I was asked it by a research student and I’m not sure even I was convinced by my answer. More to follow but, first, a bit of background.

I grew up with a mild form of science-phobia. I was interested in science but when it came to learning about it in school, I was hopeless – bottom of the class hopeless. Recently, though, I’ve been trying to conquer that phobia, partly through taking a closer interest in the research undertaken by Alzheimer’s Society.

Nevertheless, it was with the tiniest bit of trepidation that I found myself going to dinner with a group of academics and research students a couple of weeks. It was part of an Early Years Researchers Retreat for Alzheimer’s Society funded students. I was to give a talk on communication – specifically talking to the media – as part of the programme of events and decided to take advantage of a dinner invitation to meet some of the participants in advance. Wisely, I thought, I chose to pass on the pub quiz – the memory of 1970s classroom humiliation has never completed faded. In the event, the decisive question had been about James Bond films so I might not have been such a liability.

My companions for dinner came from Lithuania, Italy and Suffolk. One – the latter whose name is Coco – asked me the question with which I started this ramble. Coco is a doctoral student at the University of Cambridge. Her Twitter handle explains she is, and I quote: “A PhD researcher at the intersection of spatial navigation…” No, me neither.

But, in terms a Duncan can understand, she is using Virtual Reality to help detect an early risk of dementia, before any symptoms. She works with Dr Dennis Chan, who uses the phrase “Under the Bonnet” as a way of describing attempts to identify people at risk of dementia who are experiencing changes to the brain which will one day lead to dementia.

So, Coco asked me the question. Would I want to know if my brain is changing?

Without a cure, is there any point in knowing ahead of time if I’m likely to develop dementia? I’ve seen what it did to Mum and albeit hers seemed a largely contented dementia, if such a phrase can ever be used, I’m not sure I’d want to know what was around the corner. Then again, if early treatment and medication could slow down the progress of dementia, surely that is worth it?

But my inability to come down on one side or the other – my Johnsonian Brexit conundrum perhaps and look where that led – is not the point of this post.

The point is….I have fallen in love with scientific research. I still don’t understand most of it but I’m drawn to its potential, its sense of the possible, maybe the probable. The enthusiasm and energy of the Early Career Researchers was infectious and gave me a palpable sense of hope. And hope isn’t something I’ve readily associated with dementia.

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Time for Action

It’s @Alzheimerssoc Dementia Action Week. It used to be called Dementia Awareness Week but raising awareness, though important, simply isn’t enough. As those lovable 1970s mods Secret Affair had it: This is the time/The Time for Action.

In truth, every week is about action for colleagues at Alzheimers Society as it is for all the dementia charities, big and not-so-big. And while politicians occasionally make grandiose statements, promising overdue change, it’s the often-unheralded work of charity staff and volunteers which makes a real difference for those who need support in whatever area of their life.

But back to Dementia Action Week. This year’s focus is on diagnosis. Tens of thousands of people are living with dementia but without a diagnosis in this country. Due in part to Covid restrictions, diagnosis rates are at a five-year low. Without diagnosis, there is no medication and probably no support. We already know that people living with dementia suffered disproportionately during the pandemic – higher death rates, greater isolation, increased speed of decline.

It’s now more than 13 years since Mum received her diagnosis.

Mum celebrating her 70th birthday in 2007. There were already some signs that things weren’t right but it was two years before we had a diagnosis.

If things have improved since then, it isn’t by much. It took well over a year, probably over two, after Mum started exhibiting signs of dementia – memory loss, confusion, lack of concentration to name but three – before her GP finally agreed to refer her to a specialist. He only did that because my sister and I sat in his office – I had no right to be there as he wasn’t my doctor – and made it quite clear we weren’t leaving until he listened, really listened, to what we were saying. We knew Mum better than anyone and we knew that her changing behaviour wasn’t down to getting old as she was told.

Asking the same question over and over again is not called getting old. It’s called getting ill.

Research by Alzheimer’s Society has revealed that more than 90% of people affected by dementia believe that receiving a diagnosis has benefitted them. But as the National Clinical Director for Dementia in England, Professor Alistair Burns says, it isn’t only about the diagnosis itself, it’s about the quality of the diagnosis. Being told to go away and come back in six months, as Mum and I were, is cruel. We didn’t know what we were facing, what to expect, how to cope. A friend Tommy Whitelaw – @tommyNtour – has told of how he and his Mum travelled home on the bus after her diagnosis, cast adrift by a society which didn’t seem to care. Check out his blog – tommy-on-tour-2011.blogspot.com.

Tommy Whitelaw – a tireless and inspirational campaigner.

The Secretary of State for Health and Social Care spoke of putting dementia on a par with cancer at this week’s Alzheimer’s Society conference. This would mean a ten year strategy to make a significant difference, amongst other things. Bold words, encouraging words, but nothing without action. There it is, that word again! Sajid Javid’s challenge is to do what few politicians have done – to permanently change the landscape for people affected by dementia. He talked of “seismic change” being required. I hope he means it and is true to his word.

The Secretary of State for Health and Social Care, Sajid Javid, being urged to be true to his word by Alzheimer’s Society Ambassador and campaigner Joy Watson.

Perhaps, if I’m still wittering away on this blog is 13 years time, things will really have changed. I hope so, I really hope so.

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Mum and her Mum

I’m writing this a couple of days before Mothering Sunday. My sister and I provided cards and gifts every year but it wasn’t a day Mum was particularly fond. I think she felt it was more a commercial exercise than anything else. And, as we both had such a strong bond with Mum, we didn’t need a special day to celebrate our relationship.

Still, Mum will be in my mind and heart on Sunday. That bond remains and almost five years after she died, and 13 years since the diagnosis which kicked off the long goodbye,

Much has been written of the chord which binds mothers and children. Of course, not all relationships are as positive. I was very lucky – I know that and I’m very thankful.

Mum – too – had close ties with her mother.

Mum’s mum on her wedding day 92 years ago.
A family holiday for Mum – in the middle with glasses. The bond with her mum was very strong.

I recall the day my grandfather died and we had to wait for my grandmother to wake to tell her the news. Mum said it was one of the worst things she’d ever had to do. They cried together.

Years later, in the closing months of Mum’s life, she would cry again, calling out for her mother in her confusion and despair. If one moment summed up the cruel heartbreak of dementia for me it was my mother – at the age of 80 – crying unconsolably:

“I want my mummy.”

That memory will never leave me but fortunately other, much more positive memories, endure. And it’s those memories which will cheer me on Sunday, as they do constantly.

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13 Years On

It’a almost 13 years to the day that Dad died. On that day, February 7th 2009, my relationship with dementia began. Dad had hidden the truth about Mum’s declining health from my sister and I as much as he could. Latterly, after his cancer diagnosis, he let us in to his world – scary, fragile – but he died within four months of that diagnosis. Within a fortnight of his death, Mum finally had the dementia we had long feared confirmed.

I recently spoke to a friend about another former work colleague of ours who is showing the early signs of a form of dementia. It summoned memories of those weeks and months following Mum’s diagnosis, as we scrapped for information and support. I was fortunate that the Alzheimer’s Society filled in some of the blanks in my dementia crammer course. These days, there is a greater general understanding of what dementia means and sources of support are better publicised. But, and the but remains a large one, it can still be a very lonely, frightening and exhausting experience, both for the person diagnosed and the carer. We still have such a long way to travel.

This helps. It’s another book by the wonderful Wendy Mitchell. It’s by my bed – a treat in store. I wish I’d been able to read this 13 years ago but I guess Wendy wishes someone had written something similar when she received her diagnosis.

I’ll leave you with one line from Wendy’s introduction if I may:

“Unless you tell them, or talk about it, people will never know the difference dementia makes to your relationships – and how to make them work better.” (i)

For everyone embarking on a relationship with dementia, this is an excellent starting point.

(i) What I wish people knew about dementia from someone who knows. Wendy Mitchell Bloomsbury Publishing 2022.

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Christmas Cards

I love sending and receiving Christmas cards. Always have. Mum was very disciplined about her card-sending, making lists and referring to them year on year. it’s a discipline I’ve inherited and I still enjoy the ritual of card-writing, ideally with a glass of sherry to hand. A friend of mine once admitted he’d sat down with a pile of cards and a bottle of sherry to write his cards. He came to two hours later with one card written and an empty bottle. That has never happened to me but there’s still time.

These days, any thoughts about Christmas cards make me think of the first Christmas after Mum’s diagnosis. It was also her first Christmas without Dad and so especially poignant. Dropping in one evening, I couldn’t help but admire Mum’s wonderful array of greetings. Mum and Dad had always had a wide circle of friends and there had always been plenty of cards on display but this year Mum seemed particularly popular.

“Oh yes dear, it’s lovely”, was her response when I commented, ”they keep coming.”I looked a little more closely. ”Love Susan and John” said one card. And the next, in a strikingly similar hand, ”Love Susan and John.”

I inspected a little more closely. Either Mum’s friends had all lost track of who they’d sent to or……. . And then the giveaway… One sender had added the year to their card. Mum had dutifully put up all her cards as they’d dropped through the letterbox but she’d also found every card from the previous Christmas – Dad’s last – and put them back on display.

“I do seem popular this year….…”

It was to be the last year Mum wrote her cards without help. It was also the last year she appeared to take such pleasure in the annual ritual. I’m so pleased that she took such pleasure in her cards that year and that we didn’t point out the duplication.

Christmas cards will always make me smile. Merry Christmas all. x

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Lonely This Christmas

It’s hard to locate some festive spirit at the moment. The latest Covid pronouncements suggest that Christmas 2021, while perhaps not being “cancelled” like 12 months ago, will certainly be tempered by the looming, hyper-infectious threat of the Omicron variant.

It isn’t going to be an easy time for many of us and perhaps those long-awaited family reunions will have to be put off again. But please spare a thought for people affected by dementia. Christmas can be an especially challenging time for them in less-troubled times. The pandemic has added a level of cruelty to that experience.

In the run-up to the 25th, I spend a lot of time thinking about Mum. If I’m allowed a nod towards Charles Dickens, Mum knew how to keep Christmas. After she was diagnosed with dementia 12 years ago, I slipped into a Christmas routine. Initially, I would drive to the old family home and bring her back to ours to stay or for the day. Then, after she moved into a care home, I’d drive there first thing to spend some time with her. Present giving had little meaning. In fact, I usually ended up opening the present I’d wrapped a day or so earlier.

No matter how long I was there, I came away feeling guilty. My sister and I beat ourselves up – not literally you understand – for not having Mum “out” for Christmas. We knew that it would probably be too unsettling and possibly distressing for her to be in unfamiliar surroundings. Certainly, staff at her care home thought so but that was little consolation. We felt we’d failed her. That’s the thing about dementia. Not how much you do, how much you care, the chances are you’ll still feel wretched.

But I digress. Though we felt guilty, Mum seemed content in her care home Christmas. To her, December 25th was like any other day. Sadly, some research published today suggests that last Christmas Day was just that for many people with dementia. In a survey of more than a thousand people undertaken by Alzheimer’s Society, one in six spent the 25th alone, while for a third of those surveyed, one 15 minute visit was the entire extent of their company in Christmas week.

Of course, loneliness and isolation isn’t the solve preserve of those with dementia. It’s a blight on society which the pandemic has served to highlight. Maybe, something positive will come out of it for all of us.

I miss Mum at Christmas but then I still miss her through the rest of the year as well. I’m grateful, though, that – as far as I could tell – she didn’t seem especially lonely at Christmas. Thousands upon thousands do. Those living with dementia, and those caring for people, deprived of any respite from those caring responsibilities.

For them, Christmas is anything but merry.

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Let The Music Play On

I’m writing this while listening to Music For Dementia Radio, a 24 hour non-stop online radio station. It’s a service aimed at people with dementia and their carers but if you’re a music lover, with a taste for everything from the 40s to the 70s – and I fall happily into that category – it’s a gem. In an era of streaming, when we can choose every song we listen to, there’s a simple pleasure in being surprised when I Wanna Hold Your Hand follows How Do You Do It?

http://www.m4d.com

I’ve written many time before about how, when simple conversation was beyond us, Mum and I communicated with some gentle assistance from Perry Como and Doris Day, amongst others. Music made Mum smile and laugh when little else could. But it also helped me. Nothing made me happier than seeing “my old Mum”, eyes sparkling. For a few moments, while Perry crooned or Ronnie Hilton took us to a windmill to meet some nice mice in Amsterdam, the easy laughter which had been so much of our relationship was back.

Mum and I c.2014. I must have been channelling my inner Elton John.

Others in today’s online meeting have similar experiences. For a short while, music closes the widening chasm. And M4D Radio, with its four decade menu and a bonus Mix station, is a perfect tool.

Four years after she left us, I still miss my visits to Mum at the Firs. I miss the family of carers and fellow residents, I miss the love which lived in that old house, but, most of all, I miss the music – the moment when Mum recognised the opening bars of a song, even though she might not have recognised me minutes earlier.

Those truly were Magic Moments.

Music for Dementia
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Guilt and The Long Goodbye

Two friends of mine have lost their husbands to dementia recently. Actually, to be more precise, one lost her husband a while ago although he died last month. And to be more precise still, they lost their spouses to a combination of dementia and Covid. One lived with her husband until he went into hospital a fortnight before he died but the enforced isolation of the pandemic hastened his decline. My experience with Mum was of a gradual, at times almost imperceptible decline. The decline of T was anything but imperceptible. A very sociable and social man, he bore the virtual scars of isolation all too clearly, slipping away day by day.

The case of my other friend was different in that her husband, whom I never met, had been in a care home for a few years. She’d been a regular visitor until the home was locked down. “Visits” through a window or across a room are no substitute for a held hand, a hug, a quiet intimacy. He, too, slipped away.

Both feel guilty that they couldn’t do more to help their husbands. It’s dementia’s twist of the knife. However hard the grief is to bear, it comes with a side helping of guilt. No matter that the best doctors can’t do anything to stave off the ravages of the disease, we still feel that we should have been able to do more.

I talk to my two friends regularly. It’s tempting to say it will get easier – and it will, a little and gradually – but the truth is that the impact of dementia stays with you long after the person you love has gone. It isn’t only the shared family and friends moments which come afterwards, it’s the shared moments missed while they were still here.

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Time for Action

It’s the start of Alzheimer’s Society’s Dementia Action Week. It used to be called Dementia Awareness Week but a couple of years ago, it was decided that we had to make a greater ask. It isn’t enough for people to be aware of what dementia means – though that remain very important. What we need now is action and never has that call for action been greater than now.

The facts don’t lie. Before the pandemic, people affected by dementia were victims of injustice because, in terms of care, dementia is not classified as a medical condition. As such, as I found out with Mum and as thousands of people discover every year, if you have dementia, you don’t qualify for NHS treatment, free at the point of delivery. Instead, you are at the mercy of a woefully inadequate social care system, a system successive governments have promised to fix but which merited just a few words in last week’s Queen’s Speech. Yet again, the can of social care is bouncing down the road. Not my problem, guv.

So, the theme of this year’s Dementia Action Week is #curethecaresystem. You should see messages in newspapers and on television and radio in the coming days, which lay bare the rank injustice faced by people whose lives are wrecked by dementia.

Forgive me if I’ve told you this story before, but when Mum was first diagnosed, I had the opportunity to ask a question of the then Secretary of State for Health (Social Care wasn’t in the job title in those days – not that it’s addition seems to have made a scrap of difference). The gentleman concerned was Andrew, now Lord, Lansley. I made a simple statement and asked him a simple question:

“Mum has no stake in her illness. Nothing she has done in her life, as far as we can tell, has led to her living with Alzheimer’s Disease (stress the word disease), an illness with no cure. Despite this, she doesn’t qualify for free treatment for Alzheimer’s on the NHS. Sure, if her dementia causes her to fall over (as it subsequently did) and break a bone or two, she would be treated for free in hospital. Otherwise, we had to fund all care for someone who could no longer look after herself. However, if I – due to the stress of watching my mother fade from me in front of my eyes – took to drinking a bottle of whiskey a day, I would qualify for treatment for liver damage and other associated problems. I had brought that condition on myself and yet could, in theory, have free NHS treatment. Secretary of State, how is that fair?”

I’d love to report his answer but I can’t because I don’t think he had one. And I don’t blame him for that. There is no satisfactory answer.

That is why it is more important than ever that as many of us as possible lend a voice to this campaign. Sign the petition: https://bit.ly/3fmGUB0

And watch this video:

This is everyday life for so many people. And behind the statistics of the failure of our social care system are real people, people I speak to every week. People who don’t know how they can pay for care for their loved ones, care which affords a modicum of dignity in their final months.

Mum was lucky.

She had a wonderful care home but it cost her and us a lot. We could pay, thousands can’t. What price dignity? Surely that isn’t too much to ask.

#CURETHECARESYSTEM

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