Listening is Key

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

In 1998 Sarah Reed was an award-winning creative producer and single mother of two, when two events shattered her world.

The first was a brush with death when a burst appendix left her unconscious for nine hours in A & E, followed by a four-day stint in intensive care.  She spent the next three weeks recovering in a hospital ward overlooking a large London cemetery, an experience that made her realise that we’re all a long time dead, and left her questioning, as she puts it, “pretty much everything about my life”.

Four weeks later her dad called to say that her mum, Mary, had been diagnosed with Alzheimer’s disease.

Before the diagnosis she and her mum hadn’t been that close; Sarah had left their home in Faversham, Kent for art school at 16, since when her life had been busy, revolving around her demanding film work and bringing up her children.

Over the next decade, as Mary’s dementia progressed, a newfound bond developed between them.  “We learnt a new, more grown-up confidence with one another”, says Sarah.  In 2000 Mary moved into a care home.

Sarah soon realised that while kindly and well-meaning, the staff had little or no communication training – and her frustration developed into a passion to try to help carers provide better care.

Her mum was forced to move care homes twice and as Sarah’s knowledge of dementia grew she began to realise that staff couldn’t hope to develop a relationship with their charges if they didn’t know anything about them, and in order to find out about them they needed to be able to communicate with them.  Sarah resolved to do something about this.

At a personal level she compiled an album of photographs from her mother’s early childhood through to her years as a great grandmother.  When Mary saw the album she glowed with pleasure – although confused by the present, her mum was brought alive by the past.

And thus the idea for Sarah’s award-winning Many Happy Returns Chatterbox Cards was conceived.  Painstaking research into not just dementia, but compassion, philosophy and reminiscence therapy, led to cards skilfully designed to prompt conversations with older people.  Two thousand cards based around the 1940s were launched in 2008.  The sets sold out in three months.  Today, some 9,000 sets of 1940s and ‘50s cards can be found in care settings, libraries, schools and private homes around the UK.

Sarah went on to develop interactive communication workshops to help care staff communicate more meaningfully with residents.  She believes that “Good communication sits at both the heart and pinnacle of good care”.

Mary died in 2009, aged 92.   Dementia may have taken her mum from her, but Sarah tells me that it also, in a way, gave back.  “Caring for a loved one helps teach you a love you did not know was possible”, she says.  “It’s a feeling of understanding, forgiveness and, eventually, closure”.

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RIP Dame Barbara Windsor

Barbara Windsor in 2010, Wikimedia Commons

I woke up this morning to the news that Dame Barbara Windsor has died aged 83. She was a national treasure.  And never more did this petite figure with the big heart and the golden smile live up to the accolade than when, in her final years, she let the world know that she had dementia.

Diagnosed with Alzheimer’s six years ago, in 2018 she and her husband Scott Mitchell went public with the news.    In so doing they delivered us all  a huge service, helping to diminish the stigma around a cruel and much misunderstood condition that now afflicts close on one million people in the UK.

So in memory of this wonderful woman, and in tribute to both her long career spanning the Carry On films and Eastenders, and her courage in speaking out, I’m reposting a little of what I wrote back in 2014 to thank her and her husband.

At the time Scott said they’d decided to go public so that if, when she was out and about, Barbara acted uncharacteristically, people would know why and “accept it for what it is”.

This is so, so important.  When entertainment royalty such as Dame Barbara Windsor speak out about their dementia it makes headlines, generates discussion, raises awareness, and increases knowledge, of a hugely feared condition.

In less than 48 hours Scott Mitchell’s announcement about his wife’s dementia projected the topic into everyone’s lives.  All the national newspapers carried the story, many with double-page spreads.  Radio 4’s PM programme ran a lengthy interview with Formula 1 racing legend Sir Jackie Stewart, whose wife Helen has frontotemporal dementia.

He spoke informatively, fluently, personally and courageously about what Helen’s illness has meant for them in ways that will resonate with thousands of families up and down the country.  He described how, because of the wealth he’s accrued, he can afford specialist nurses for his wife whereas others, less affluent, less fortunate, cannot. Staggered to discover that there is no cure, Sir Jackie has launched a charity, Race Against Dementia, to fund research into the condition.

On the BBC Breakfast television show a panel including author Wendy Mitchell, who lives with Alzheimer’s, discussed Barbara Windsor’s diagnosis.  In just a few minutes several key points were beamed into households the length and breadth of the land.  The main, crucial, message being that with more knowledge of the condition, the public could better appreciate how it affects those who have it and show them more tolerance, more patience, more understanding.

Wendy Mitchell with her daughters Gemma & Sarah

I don’t know if she’s fully aware of it, but Wendy Mitchell is a journalist’s dream.  She speaks in near perfect (and unusually sensible) soundbites.  I say this – I hasten to add – in a spirit of awe and appreciation.  It is one of those things that seems so easy yet is very, very hard to achieve, particularly on live television in front of 1.5m viewers.

“Dementia is like a cruel game,” she said.  “Some days it throws a curved ball at you but because I’m such an optimistic person  I say that tomorrow might be better.  If you dwell on the sadness of bad days, it is a day lost of happiness”.   A day lost of happiness.  Her inversion of the words merely adds to the power of the sentiment.

Wendy’s fellow panellist Simon McDermott sprang to the nation’s attention two years ago when he uploaded YouTube videos of his father Ted (who has Alzheimer’s) singing in the car.  The films soon went viral and the Songaminute Man was born.

In an echo of the devastating condition itself – whereby a single diagnosis has an overwhelming impact, on not just one individual but an entire family – when a celebrity and his or her loved ones decide to go public with a dementia diagnosis, the benefits ripple outwards, causing a cumulative, positive effect.

It is all part of the soft power of culture.  Slowly but surely as more and more of those in the spotlight choose to speak out – think of author Terry Pratchett, actress Prunella Scales (who, together with her husband Timothy West, featured in seven television series about the couple’s canal boat trips following her diagnosis), Sir Jackie Stewart and his wife Helen – the public’s knowledge and awareness of dementia grows, silence gives way to understanding, fear subsides, stigma fades.

The famous have a platform and unrivalled power to use their well-trained voices.  But dementia – as anyone who has it or whose loved ones have it, knows only too well – is also very personal, involving complex, competing emotions.  It takes a brave person to talk out.

Which is just what Dame Barbara was.   She died at 8.35pm on 10 December at a London care home.  Her husband Scott said that the actress’s final weeks were “typical of how she lived her life … full of humour, drama and a fighting spirit until the end”.   

All we can say is thank you Babs, for everything.

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Mike & Tom. A love story.

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

Mike Parish and Tom Hughes have been together for 45 years.  Theirs is a love story, and I’ve found researching their lives, witnessing the tenderness, concern and pride that flows between them – very moving.  And a reminder of the beauty to be found in us flawed human beings.

But their story also has an ugly side.  For much of their lives these two men have been the victims of prejudice, rejection, violence even.  One of them still bears the visible scars.  The unseen, emotional cuts run deeper still and have lingering consequences.

Five years ago Tom was diagnosed with dementia.  He can no longer speak, he loses his way.  Mike, his lover of almost half a century, holds his hand to guide him.  The painful irony is that for decades into their relationship this couple daren’t hold hands in public because they’re of the same sex .

Now, in different ways, they find themselves yet again confronted with discrimination. It’s not aggressive this time, or even intentional.  But it’s there, in the preconceptions voiced as they attend countless medical and social care appointments, where they are routinely assumed to be father and son or a carer and his charge.  In constantly explaining who and what they are they face a sort of endless coming out.

I would love to have chatted to both of them, but Tom is now non-verbal and in these strange Covid-19 times it simply didn’t work when we tried to include him in the podcast.  It is so sad, but it reveals the stark truth about dementia: it’s a progressive disease, and there’s no getting round that.

But as Mike and I talk, Tom is never far away.  Mike says he and Tom are true soul mates, telling me about the Greek myth that lies behind the phrase – that we humans were originally created with four arms, four legs and a head with two faces.  But Zeus split us in two, so we’re all searching for our other half.  To complete us.

“When the two halves meet there is an unspoken understanding of one another, they’re unified and know no greater joy,” says Mike.  “This was what we both felt when we met, and still do”.

It was in 2008 that Tom, an NHS pensions manager with an astute mathematical brain, began to experience memory problems.  Five years earlier he’d been diagnosed with HIV but medication had kept him well.  However by 2011 his worsening symptoms, including trouble understanding new tasks, forced him to retire.

There were other signs that things weren’t quite right: teaspoons continually went missing (it transpired Tom was throwing them away), while bottles of handwash kept appearing, at one point there were 23 under the sink.  Finally, when they went out to a restaurant and Tom ordered only for himself, Mike knew he could no longer ignore the signs, and in 2015 Tom was diagnosed with HIV-associated neurocognitive disorder, or HAND, a very rare form of dementia.  Soon afterwards Mike gave up his job with the fire brigade to care for him, experiencing what he describes as a tsunami of shock and grief.

It’s been through telling their story that he and Tom have found a way to move on.  They started by sharing their experiences with dementia support groups and were soon invited onto national television and radio, and to speak at universities, hospitals, care homes.  Being a same-sex couple experiencing dementia proved relatively rare and Mike felt a responsibility to reach out to others.  It turned out to be of huge benefit to all.

“There’s a powerful positive outcome from storytelling,” says Mike.  “It comes from the hope that what you’re doing may help others and it also gives a sense of normalisation, validation and the strength to carry on”.

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Kate Lee, daughter & CEO

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

My guest on this week’s Well I Know Now podcast is the chief executive of the Alzheimer’s Society, Kate Lee.

As well as being a CEO, Kate’s a wife, mother and daughter. Her 80-year-old mum’s vascular dementia is now so advanced that she lives in a nursing home and can’t talk; the only way Barbara can show her daughter that she loves her is to hold her hand. At the moment, of course, along with thousands of others, these two can’t hold hands, or meet, or hug or be together in any meaningful way, at all.

A few weeks ago Barbara’s husband of almost 60 years was persuaded to go and visit her so that he could wave through a window. I saw a short video of this on Twitter and was very moved – the accompanying tweet from Kate said, “On a freezing morning, with our backs to the wind, we waved and shouted to mum through a window”.

So it’s quite obvious that the woman heading up the Alzheimer’s Society brings a very personal perspective to her new role.  Since taking up her post just a few days before the country went into its first Covid lockdown in March, she’s not been afraid to talk about what she and her family are going through in the national media and social media.

We talked a lot about her own family’s story, about the challenges of being both the daughter of someone living with dementia and the CEO of the UK’s biggest, most influential organisation in the dementia sector, about the realities of the condition (which aren’t always quite as they’re portrayed in the movies), about the tricky role of a close relative who lives some distance from his or her loved one and isn’t a primary carer but wants to help.

And of course we talked about how the Alzheimer’s Society has responded to the coronavirus pandemic, particularly the vexed issue of care home visiting, and her vision for the organisation’s post-Covid future.

Visit the Alzheimer’s Society online here: https://www.alzheimers.org.uk/

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