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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Morella Kayman – A Life to Remember

I’ve been lucky enough to meet some special people during my association with Alzheimer’s Society but no-one more inspirational than Morella Kayman. Three years ago I was asked to interview Morella for an internal conference of fundraisers. We had never met and like a good journalist, I did some thorough research by reading her autobiography.

Morella had, at one time, been an opera singer until cancer ended that career but much of her life story centred on the work she did after her beloved husband Lawrence was diagnosed with early onset dementia in the 1970s. I’d thought my attempts to navigate the system when my mother was diagnosed in 1998 were challenging but Morella’s story took my breath away. Very few people talked about dementia in the 70s, even fewer understood it. Her determination that Lawrence shouldn’t just be a statistic changed all that. I couldn’t wait to meet her.

We arrived around the same time and she greeted me like an old friend. The brief was to chat on stage for about 15 minutes – I think we were still going as we approached the half-hour mark. Frantic wind-up signals ensued from the back of the room.

We kept in touch afterwards, exchanging emails and seeing each other, occasionally, at Alzheimer’s Society functions. Her passion for raising awareness about dementia and ensuring those whose lives are touched with it get a fair deal, never dimmed.

Today I learned the sad news that Morella has passed away. Thank you, Morella, for all you achieved and for inspiring so many to follow in your footsteps. Rest in peace. x

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In Praise of Unpaid Carers

It’s a “crucial milestone” according to our Prime Minister. He was talking about the NHS announcement that a Covid vaccination has been offered to all older residents at “eligible” care homes. To which some of us have asked – what about the carers? There’s a target of February 15th to vaccinate all care home residents, carers, people over 70 and frontline care workers.

That’s very laudable but it misses out a group who, sadly, are usually forgotten about in discussions like this. That group is the huge number of people providing unpaid care to older or disabled relatives of friends. According to the charity Carers UK, 1.3 million people in the UK provided more than 50 hours of unpaid care a week in 2019. Five million were juggling caring responsibilities with work. 600 people gave up work every day to become full-time unpaid carers.* Did I say unpaid? Of course, there is the Carers Allowance of £67.25 a week which isn’t means-tested but is taxable. Caring certainly isn’t a career choice. But unpaid carers save this country £132 billion a year. Think of that. £132 billion which could come out of the nation’s coffers but comes, instead, from the private means of individuals. The sense of sacrifice is awe-inspiring.

I feel something of a fraud when I talk about unpaid care. Apart from a few concentrated spells, I was never a full-time personal carer for Mum. I would spend weekends with her and would call in to put her to bed from time to time, though my sister took that role most of the time. I didn’t, though, give up full-time work and I didn’t move in with Mum full-time. I felt guilty at the time and when I hear of some of the sacrifices made by others, I feel guilty now. I console myself with the knowledge that we tried to provide Mum with the best possible care at home and then we achieved that in a care home. But even nearly four years after she died, that sense of enough is never enough persists.

I have spent part of today at the Advancing Dementia Care Cymru Conference as a virtual attendee. There was much talk about care, both paid and unpaid. One carer, asked for three wishes for the future, chose acknowledgement of what unpaid carers do. Acknowledgement is only a start of course. And, with so many carers locked down at home with the person they care for at the moment, wouldn’t priority vaccination be a gesture of thanks for the selfless work they do?

*CarersUK Facts About Carers 2019 https://www.carersuk.org/images/Facts_about_Carers_2019.pdf

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A Mental Health Pandemic?

I’m anxious. More anxious than I’ve been at any point in the pandemic. I spent Monday producing a programme for BBC News in which coronavirus featured heavily – it’s hard to find many news stories at the moment which aren’t touched by the virus in some way or other. I had consumed the alarming data about infections and deaths which emerged on Monday in the company of colleagues. We were able to discuss what we heard. Yesterday, I watched the evening television news on my own, save for the company of my ever-loyal cats. (I love them dearly but the conversation is often one-sided.) The data wasn’t much different – a rising number of cases, hospitals teetering on the brink of overwhelm – but sitting alone, without being able to process with another person, I felt a bit scared. I was able to talk it through with my wife when she came home from work but at the time I heard it, I felt alone.

Earlier in the day, I’d spoken to a lady who lives alone, and with her husband, who has dementia. She – too – sounded scared. Her husband doesn’t seem to understand about coronavirus – why should he? I talk to the two of them every week as part of an Alzheimer’s Society initiative called Companion Calls. I spend more time talking to the lady than I do her husband. When I first spoke to him, last May, we could hold conversations which I think made sense to both of us. Now, there’s barely a sentence which follows from what preceded it. The grip his dementia has taken in seven months is frightening. Of course, it would have developed in any circumstances but denying the company of friends to this most sociable of men has surely hastened the decline and is cruel in the extreme. He doesn’t understand why he can’t go out, why his friends don’t call to see him. That forced isolation has taken a terrible toll.

But in some ways, I’m more concerned about his wife:

“We haven’t been out for weeks,” she told me recently.

She spends day after endless day in the company of someone to whom she’s been married for half a century but with whom she can barely hold a conversation. It’s hard to appreciate the toll that is taking on her health, mental and physical. She worried yesterday that voicing her fears was somehow making things worse for me. On the contrary, talking to some as confused and conflicted as me is quite a tonic.

Much is being written at the moment about the impact of the virus on our mental health. This morning, I read about the strain on NHS and care staff. It isn’t only the extra demands of their work, it’s having to deal with exhaustion, grief and, in some cases, despair. Compared to what they are living through, and what my weekly companion is experiencing, my anxiety is minor league.

Of course, there is a light flickering at the end of this starless tunnel. We’re told that the vaccine will allow things to go back to something like normal in time. But for many, many people, protection against catching the virus is only part of the story. The impact of the pandemic on mental health might take a lot longer to heal.

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Boxing Day Reflections

As I sit at my kitchen table on Boxing Day, I’m reflecting on a quiet but thoroughly enjoyable Christmas Day. I’m lucky and I know it. Had this pandemic struck four years ago, I would have been one of those whose only “contact” with Mum would have been through a window or, if I was lucky, a perspex screen. What would she have made of that? Would she have understood, for one second, why I was no longer sitting next to her, holding her hand?

It would have broken my heart and probably hers too. Denying people who have little of meaning left in their lives one thing of true value – a hug, a squeeze of the hand, a reassuring closeness – is the final indignity, the final trick of cruelty played on them by this pernicious state we call dementia.

So while I miss Mum, and always will, I’m grateful she isn’t having to live through this. If you’d told me I would write something like that in the days following her death soon after her 80th birthday in 2017, I would never have believed you. And that’s why my heart goes out to all whose time with loved ones is reduced to a few minutes standing in the cold outside a window, hoping against hope that their presence means something to the person the other side of the glass.

The pandemic has had a disproportionate impact on people living with dementia. In August, a report by The London School of Economics and University College London found a quarter of all deaths related to Covid-19 in England and Wales were of people living with dementia.

It’s a devastating statistic and casts some doubt on the so-called “Ring of Steel” the Department of Health claimed it had placed around care homes in the earlier days of the pandemic.

Perhaps, as more become aware of grim data like this, of how people with dementia are discriminated against by a virus just as they’re discriminated against in everyday life, then we can really start to make a difference. It’s the thinnest of thin straws but it’s something.

For all those whose lives are touched with dementia, I hope you find some peace and some hope in these darkest of times.

Christmas might not have meant much to Mum in later years but feeling close to her at this time of year meant the world to me.

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Mum and Christmas

My earliest memory of Mum and Christmas is her tucking me in bed on Christmas Eve, bidding me to go to sleep – some chance. My bedroom was off the hall in the bungalow in which we lived, and the Christmas Tree was just outside my door. Mum would leave the room, pulling the door to. I remember lying in bed, watching the lights from the tree dancing skittishly on the ceiling through the crack in the door. Those shimmering lights – reds, blues, greens – were Christmas to me.

My last memories of Mum and Christmas aren’t so sweet and innocent. Nearly two years after her diagnosis, as dementia’s grip tightened, I made the hour-long journey from my home to the family home, a family home now with only one occupant. There was thick snow on the ground that year and the return journey with Mum on board was not without its challenges. If donning a brave face was an Olympic sport, I took gold, singing carols and telling poor jokes all the way home. We arrived to the rich aroma of a roasting turkey and I promptly burst into tears. Words were beyond me. It was the first time I’d cried about Mum’s dementia. The image of our Christmas lunch suggests a different story but the full despair at what was happening to her had finally taken hold.

Mum was now easily disorientated and had become slightly agitated the last time she’d stayed with us, so I was to take her home again later. So, only a few hours later, we were out in the snow once more. We were back about eight and because I didn’t like the idea of Mum being alone on Christmas night – whether she knew it or not – I stayed over. Unusually, Mum wanted to go to bed and by half past eight, I was sitting alone downstairs, staring at the abandoned armchair from which my father had held court on Christmas nights gone by. (He never surpassed a virtuoso Charades performance in which, while attempting to create an impression of The Railway Children, his foot disappeared through a snapped floorboard.) Dad was not a natural actor but what I’d have given for one of his performances that night.

By the following Christmas, Mum was in a care home. She never came to us for Christmas again. Mum was settled at The Firs and we decided that a long-ish journey to a place she almost certainly wouldn’t remember would be too unsettling. Were we right? Who knows but all we could do was trust our instincts.

So, for the next six years, December 25th began with a trip to The Firs. Mum had always thrown herself completely into Christmas, catering for large family groups, possibly breaking her own rule by having a second sherry before lunch. When she went for Cinzano and lemonade, we knew the boat had been well and truly pushed out. Now, though, Christmas seemed to mean nothing. Presents were left unopened, unless I did it myself. Warming memories of festive seasons gone by were beyond her. Tears (mine) were never far away.

And yet, as we approach our fourth Christmas without her, I’d love to be making that journey to The Firs one more time. I’d happily unwrap the gift I’d wrapped only hours earlier. I’d be thrilled to sing one more chorus of Frosty the Snowman.

It might not have meant much to her in those closing years, but Mum remained and remains an essential part of Christmas.

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Farewell Dame Barbara

It was a bit like losing a member of an extended family. The news that Barbara Windsor had died pulled me up short this morning. She was a part of my childhood as I chortled mischievously at Carry On innuendo I thought I should understand in the 1970s. Then, more recently, she became a voice in the dementia darkness. With her husband Scott, Barbara inspired us to raise money and awareness in equal measure for Alzheimer’s Society.

I had the chance to talk to Scott about her at an awards lunch little more than a year ago. Attending that sort of an event was no longer possible for Barbara but Scott’s presence made sure she was still in the room. Together, they did so much for so many people, just by sharing her story.

Living with dementia is, for many, a very private thing. When Mum was told she had Alzheimer’s Disease, she made the decision to be open about her diagnosis:

“It’s happened. I’m not going to hide it.”

But many don’t want to talk about it. Some can’t, some choose to ignore it. I remember receiving a call some years ago to say that a mutual acquaintance had received a diagnosis – would I ‘phone her? I did but it was a mistake. She didn’t appreciate my offer of support, denying there was anything wrong. I’ve often wondered since how her dementia story unfolded.

When someone in the public eye, like Barbara Windsor, chooses talk about their dementia, it helps to tackle the stigma which still casts a dark shadow over the condition.

And so, while I’ll remember the cheeky Hope Springs in Carry On Girls and the feisty Peggy Mitchell behind the bar at the Queen Vic, the Barbara Windsor I’ll remember most fondly is the one who didn’t let dementia define her, the one who strove to make it OK to talk about the cruellest disease of all.

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Sport United Against Dementia (Don’t forget your sandwiches)

Sport has been a huge part of my life for as long as I can remember. Longer, in fact, as I’m told I watched the 1966 World Cup Final on television when aged barely two. My parents took me out on to the streets of West Bromwich not long before my fourth birthday to cheer home my club, the FA Cup winners in 1968.

Little did I know that more than 50 years later I’d still be waiting to repeat that experience. Or that raising awareness of what happened to my hero of 1968, Jeff Astle, and to so many of the Boys of 66 would be such a central part of my life with Alzheimer’s Society.

I think my love of sport came from Mum. Dad was interested, up to a point, and he dutifully took me to watch West Brom in the mid 1970s, a duty I now realise was above and beyond given the way the Baggies played at that time. Mum, though, was a real sports lover. She was an Albion season ticket holder in her early 20s but cricket was her real love. She’d call in at the County Ground Edgbaston on her way home from school and the day she took me to my first test match there, in 1975, was a memory we both treasured.

Sadly, that memory was swallowed up along with all the rest as the icy grip of Alzheimer’s tightened. But until the very worst of dementia showed its face, Mum would still remember the names of the cricketers she’d grown up watching, cricketers like Eric Hollies and Tom Dollery.

Years later, she recognised them – by then well into retirement – at a county game and, urged on, I asked for their autographs, as Mum had done a quarter of a century before.

In later years, Mum and I watched England in a test match in Trinidad, the 40th birthday present from my wife which keeps on giving years later. And I took Mum to see South Africa play Pakistan in the World Cup at Trent Bridge. So many rich memories, so much fun, so much love. And one thing unites all of my cricketing escapades with Mum. Food and in particular, sandwiches. Whether it was that first test match in 1975, or I was sneaking off for a day of county championship cricket in the 1980s, or we were in Port of Spain, Mum always prepared a mound of sandwiches. Looking back, I reckon there were enough for lunch for both teams, their coaches, the umpires and both scorers too. And then, in a separate container, sandwiches for tea too. Sometimes, she’d offer variation by changing to bread rolls, a culinary Derek Underwood switching to over the wicket. (One for the cricketing cognoscenti there). And as I left for a day at the cricket, came the familiar words: “Don’t forget your sandwiches.”

As I’ve already said, our cricketing conversations faded and then disappeared altogether in the years before Mum’s death. But, although the names of family members and friends had gone forever, the name of Ian Bell of Warwickshire and England would still light up her eyes. Ian Bell was the last truly great Warwickshire player to emerge in her lifetime and though she only watched him plunder runs on television, the emotional pull of cricket and of Warwickshire, was strong.

“England are 400 for 6 and Ian Bell’s made a century… “

That lovely smile.

All was well in some part of her world. Ian Bell’s retirement this summer is another straw snatched away.

Sport plays a part in the lives of many people affected by dementia, whether as a pastime or as an emotional connection to happier times. That’s why I’m so proud to be part of Sport United Against Dementia which launches today.

Sport gave Mum so much – and me so many sandwiches – and now sport can reach out to help people whose lives have been blighted by dementia by raising awareness, raising money and by sharing the emotional pull it makes on so many of us.

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People Are Dying of Sadness

Five relatively short words which stopped me in my tracks this morning. The words came from a caller to BBC 5Live Breakfast as they debated the government’s latest pronouncement on visits to care homes.

I spoke to a lady last week who hasn’t been able to hold her partner’s hand since August. She “visits” him twice a day through a window. She has no idea when she will be able to hold his hand again and as she waits, his condition deteriorates:

“We had a great life together,” she told me. “And I just want a bit more of it.”

Her chance of “a bit more” seems to fade, day by visit-less day.

It’s quite possible that more people are dying in care homes from this deprivation than from Covid-19. Close contact visiting is allowed at end of life but, by then, it’s too late.

There are no easy solutions to the pandemic problems facing us all. This is a crisis like none of us has ever faced. But giving relatives key worker status, with the appropriate PPE and helping care homes to create Covid-safe environments, would make a huge difference to so many people.

Until them though, as the caller said, people are dying of sadness.

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