Well I Know Now with Pippa Kelly

Suzy Webster is very special. She’s a mother, daughter, wife, and for many years carer to her mum, Barbara. In 2012, after Barbara developed dementia, she and Suzy’s dad, Gordon, came to live with Suzy and her family in Chepstow. 

When I first met Suzy over a decade ago, I was struck by her quiet determination, her love for her family and her wonderful way with words.  I can still remember her telling a conference that her parents had moved in with her and her family so that they could have “the dementia adventure together”. So simply put. Yet behind the phrase lay the endless reserves of love and courage that those of us who have followed Suzy and her mum’s story have witnessed over the years. 

This is Suzy’s third appearance on Well I Know Now and there is a sadness to this episode and a reason why Suzy is joining me once again.  For late in 2022, having weathered the dangerous and turbulent years of the pandemic, Barbara died aged 75.  Her death has, inevitably, left a massive void in her daughter’s life.

“Who am I now? What do we do without her? I began to grieve more than one mum; I missed holding her hand – as a little girl on the school run, as my go-to person in my young adult life, and her warmth as the constant presence in our lives as her dementia progressed,” Suzy told me. Adding, “Does that make sense?”

It absolutely does, Suzy. And I’m sure it will resonate with many listeners. The death of a mother, a mum, touches places deep inside us, exposing emotions we didn’t even know existed – at least that’s what I found, and I’m pretty sure I’m not alone. In fact, whenever I talk to Suzy I know that I’m with someone who really understands, who knows what I went through with my mum, and I think this is why Suzy has proved such a popular guest. Others feel this too.

Suzy and I are here today to talk about her loss, but also her future, her hopes and plans as she enters a new chapter of her life.

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Kitty Norton describes herself as a former “just about everything – from non-profits arts administrator to cabaret performer to post-production professional to crappiest daughter of the year award-winner for more than forty years”. 

She forfeited that last accolade when, six years after her mum was diagnosed with vascular dementia, and following the sudden death of her dad, she gave up her job with NBC in Los Angeles to move back to Oregon so that she and her sister could provide their mum with the best possible dementia care. 

To get her through this unplanned turn in her career, Kitty started a blog called Stumped Town Dementia. The blog brought her a temporary escape from dementia as well as countless virtual caregiver friends from all over the world who supported her with their understanding comments, emails and Zoom dates. 

When her mum died in 2021, Kitty decided she wanted to meet the virtual friends who had become so very important to her as she cared for her mum and, in her words,  “Sit out on a summer’s night, open a couple of bottles of wine, and find healing in the camaraderie of a fellow dementia caregiver”. 

She then went and did just that. The result is an incredible 90 minute film charting the 75 hundred miles and 27 states that Kitty covered in 26 days. Wine, Women and Dementia has already been garlanded with awards. It’s produced by some serious professionals and features caregivers Kitty encountered through her blog, including former Well I Know Now guest and host of Daughterhood, the Podcast, Rosanne Corcoran. 

Like Stumped Town Dementia, Wine, Women and Dementia pulls no punches. Its protagonists, the caregivers, are strong, articulate women with fire (and possibly the odd drop of rose or Californian white) in their belly. It’s a rollicking, funny, sad, informative, supportive must-watch for all family caregivers, for policy makers and anyone remotely interested in dementia – or perhaps, simply for everyone. 

You can find information on when Kitty’s film will be available here in the UK at the website https://www.winewomenanddementia.com/ and you can find her blog at https://www.stumpedtowndementia.com/

Wine, Women and Dementia will be available online in support of Dementia Action Week, May 13-19. Registration is free or, if you are able to support the film's continued outreach to family carers, a donation would be very welcome.

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This episode is dedicated to Tony Husband, who appeared on my show not once, but twice – which, in itself, is testament to the man’s generosity of spirit and dedication to raising awareness of dementia.  

After Tony and I had recorded our first podcast, I said that, for me, Tony was all about creativity, humour and love, and I’d stand by that.  

“Life,” Tony once said, “is about laughing”. For the prolific cartoonist, that was absolutely true. He used his dark humour to investigate life’s paradoxes and frustrations, making the complex business of living seem simple. Through a few carefully chosen lines, Tony summoned up the most profound human experiences, including what it means to live with dementia.  

And, when his own dad succumbed to vascular dementia in 2011, he brought his considerable skills to bear on this most cruel of diseases. One night, after his dad’s death, Tony began to talk to him in his studio as if he were still there, asking Ron what it had been like to live with the condition. He recorded the conversation in cartoons on A4 paper which were later turned into his book, Take Care Son – the last words his dad ever spoke to him.  

Tony’s was a phenomenal talent and he used it to its full and to the very end. He died on his way to a leaving lunch at Private Eye, the satirical magazine for which he drew his famous Yobs strip for 37 years. I think Tony would have enjoyed the irony in this and definitely made a cartoon out of it. 

With me to talk about Tony, his kindness, compassion, wisdom and wit, is dementia campaigner and founder of Exeter's Dementia Action Alliance, Gina Awad. Gina knew Tony far better than I did; she collaborated with him for many years on different dementia projects including the Shining a Light on Dementia calendars and the book, United: Caring for Our Loved Ones Living with Dementia. 

Tony's friend, the poet and broadcaster Ian McMillan has also contributed, as has Tony's son Paul, and I will leave the last word to Paul: "My dad made people who are struggling start smiling again, and I'm proud of him".

Tony and Gina's book, United: Caring for Our Loved Ones Living with Dementia is available on Amazon. 

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Wendy Mitchell is quite simply one of the most impressive people I have ever met. Diagnosed with Alzheimer’s disease nine years ago at the age of 58, after an initial slump into depression, Wendy has since devoted her time and precious energy to raising awareness of dementia, frequently appearing on our broadcast media – she’s a familiar face on the Breakfast Time sofas – and speaking at major conferences. 

Wendy’s blog, Which Me Am I Today remains one of my favourite reads and, in writing it, she’s created her own paper memory, something that has enabled her to produce two Sunday Times best-selling books about dementia, Somebody I Used to Know and What I Wish People Knew About Dementia – both written in collaboration with journalist Anna Wharton. 

This summer, Wendy’s third book, One Last Thing, was published to great acclaim. As with all Wendy’s writings, it comes from the heart and is honest, insightful and highly readable. 

Which, given its subject matter, is no mean feat. For One Last Thing deals with that most feared of subjects: death and dying. Though, as Wendy says herself, since her dementia diagnosis, she doesn’t fear anything anymore, including death. 

In her book Wendy turns her mind to the serious matter of her future – which, as it does for all of us, involves her death – in order that she may fully appreciate living now. She explores this knotty, difficult topic through conversations with different people, including friends living with dementia and experts in various aspects of end of life, such as the legal practicalities and medical choices here in the UK.

Often, she turns the spotlight onto herself: “As dementia dilutes my personhood,” she writes, “I cling to those things that make me who I am – a mum, a blogger, a walker and a photographer. For me, once those parts of me have been taken by this cruel disease, I’ll have lost my personhood and would prefer death to an existence of snapshots of joy, as the time spent in confusion would far outnumber those moments”. 

Useful contacts:

Wendy’s blog can be found at https://whichmeamitoday.wordpress.com/  and her latest book, One Last Thing, How to Live With The End In Mind, published by Bloomsbury, is available on Amazon

Discover more about advance care planning advocate Clare Fuller and her services at https://speakforme.co.uk/

My Future Care Handbook, an interactive book that helps people plan for later life: https://myfuturecare.org/

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My two guests this week are passionate about improving life for people living with dementia, particularly through the education and training of those who support and care for them. 

Dr Keith Oliver is an expert by experience – 13 years’ experience, having been diagnosed with Alzheimer’s in 2010, aged just 55 and forced to retire after 33 years in teaching, latterly as a headteacher. Prof Claire Surr, Professor of Dementia Studies and Director of the Centre for Dementia Research at Leeds Beckett University, has attracted global recognition for her research and leadership in dementia education and training for the health and social care workforce. 

Dr Oliver’s roles and work within the dementia sector are almost too many to mention, but here’s a flavour, starting with the honorary doctorate he received in 2021 from Canterbury Christ Church University.

Keith Oliver has authored or co-authored four books on dementia since being diagnosed. He is an Alzheimer’s Society Ambassador, a Kent and Medway NHS Trust Dementia Envoy, a member of the 3 Nations Dementia Working Group and a founder member of the Young Dementia Network. It’s worth noting that the definition of young onset dementia is when it affects someone under the age of 65. 

Keith is often to be seen and heard on television and radio and at national and international conferences, and regularly contributes to newspapers, magazines and professional publications. He recently contributed to an Open University Publication entitled Education and Training in Dementia Care – a Person-Centred Approach, co-authored by Prof Surr. Forming part of the Reconsidering Dementia series, the book is a deep dive into the complexities of this once neglected subject. Like all the other books in the series, as well as being scholarly, it spells out what the theories actually mean for those at the sharp end, such as people living with dementia, their families, those working in dementia care, policy-makers and professionals.  

Prof Surr’s career has centred on the delivery of truly person-centred care for the 70 to 80pc of care home residents who live with dementia, with a specific interest in supporting care home staff in their roles and methods, and evaluating their impact. Most recently Claire has been involved in researching cancer care for people with dementia.

Education and Training in Dementia Care – a Person-Centred Approach, an Open University Publication, is available from Amazon.

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I am sure that many people listening to my podcasts will be aware of two ground-breaking medical breakthroughs that have occurred in recent months. These are the immunotherapy drugs Lecanemab and Donanemab, which is shown to have slowed the decline in memory and cognition of people with early stage Alzheimer’s disease by up to 40pc. 

These drugs do not, like others before them, merely mask the symptoms of Alzheimer’s, which accounts for over 60pc of all dementia cases – they modify the disease itself. They bind to the Amyloid plaque that builds up in the brains of those with Alzheimer’s, triggering the body’s own immune cells to remove the destructive plaque. 

My guest, Dr Richard Oakley, the Alzheimer’s Society’s Associate Director of Research, has described the arrival of Donanemab as a turning point in the fight against the disease.

Dr Oakley says that treatments like Donanemab are the first steps towards a future where Alzheimer’s could be considered a long-term condition. People may have to live with it, but they could have treatments allowing them to manage their symptoms and continue to live fulfilled lives. 

The big question is: if the drugs become available in the UK, will the NHS be able to deliver them to those they would most benefit?

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In her native America, Lori La Bey has been recognised for her tireless work to improve the lives of those with dementia through creating, discovering and making accessible a wide range of resources. She has been hailed as a Health Hero by none other than Oprah Winfrey and championed as an Architect for Change by the former First Lady of California, Maria Shriver.

Since walking away from a successful career in real estate in 2009, Lori has launched America’s first radio station dedicated to dementia – indeed, Alzheimer’s Speaks is believed to be the first dementia radio station in the world. Global first or not, Alzheimer’s Speaks gives a voice to everyone, allowing people and companies from throughout the world to share their business and educational resources, products and advice. While a Dementia Map provides a worldwide directory of blogs, relevant enterprises and events to which individuals and companies can sign up to make their offerings available to a wider public. 

Lori was instrumental in creating America’s first dementia friendly community in Watertown, Wisconsin in 2013, three years later she launched one of the country’s first memory cafés in Roseville, Minnesota. Her webinar series, Dementia Chats, sees the real experts – those living with the condition – offering their invaluable advice.  

Recently, her children’s book, Betty the Bald Chicken, co-authored with Scott Carlson, was published. As with all Lori’s dementia work, the book is inspired by her mother’s 30 year struggle with Alzheimer’s and her own caring role. But it’s not limited to dementia, Betty’s story applies to virtually any situation in which someone finds themselves on the outside, struggling to fit in and not being understood. It teaches people of all ages that we have much more in common than sets us apart.

“We need to shift how we care for one another and ourselves from crisis to comfort,” Lori told Maria Shriver. “We need to give hope and support to families and professionals alike, through open conversations, shared life stories and lessons learnt. Dementia is not a disease of one but of society”. 

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In this podcast I talk to two women who, in their different yet linked ways, have grown to appreciate the importance of identity, purpose and togetherness.  The common theme isn’t dementia but being the partners of military men – though never fear, dementia plays quite a part in our discussions as you will hear. 

Heather Sharp and her husband were both serving in the Army when, after having their two children, Heather made the difficult decision to leave. She didn’t know what to expect as a military wife and readily admits she had preconceived notions of coffee mornings and bridge. How wrong she was.

Heather discovered a diverse, dynamic and resilient group of women who had all made huge sacrifices to support their partners’ careers, and she realised that if this formidable set of women harnessed their skills and experiences they could achieve incredible goals. And so the Forces Wives Challenge was born. Through their feats of endeavour, they raise funds for deserving causes that almost always involve Forces children. 

My second guest is Steph Quintrell. Another Army wife and mother, Steph worked for many years in the care sector, often among those with dementia, until, in 2019 she was diagnosed with a profoundly life-changing complex neurological disorder and found herself permanently confined to a wheelchair. She says it took her two years to come to terms with her diagnosis. 

Then she discovered the Forces Wives Challenge on Facebook and immediately recognised the women involved in it as kindred spirits who were, like her, energetic and passionate. She couldn’t physically partake in the physically demanding challenges, so took on an admin role, which she loved. 

A keen horsewoman, Steph rediscovered freedom and independence through riding and it was her husband John who suggested that, were the Forces Wives to take on a riding challenge, Steph could take part.  

This June, Steph will be part of the team crossing the Pyrenees on horseback as they recreate the Second World War Freedom Trail, one of the many escape routes over the mountains into Spain. An astonishing achievement for anyone, a true route to freedom and independence for Steph, who told me, “Being part of the Forces Wives Challenge gave me back my sense of being, of identity and purpose. I’m a much happier person now – in fact, I have a happier life now than before my disability”. 

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Susie Singer Carter spent her childhood as a gymnast, an entrepreneur (selling her toys door-to-door), debate champion, party planner, flag twirler and cheerleader, while surviving her parents’ divorce and her father’s untimely death in a plane crash.

While studying journalism at UCLA, she hosted a radio show, modelled and sang in a pop group produced by Chuck Lorre. After college, she opened a handmade jewellery store, acted in TV and film and then decided she wanted to create the projects.  She worked in development, launched a production company, Go Girl Media, and wrote and produced two CBS tween shows.

When her mother Norma developed Alzheimer’s, Susie became her caregiver and a spokesperson for Alzheimer’s, while writing a screenplay for Lionsgate and co-producing a feature for Sony. She signed a deal with Fox, wrote, produced and directed a pilot with Bryan Cranston of Breaking Bad fame, plus two documentaries for Women’s History Month.

She launched an award-winning podcast, Love Conquers Alz (available on all podcast platforms), and an award-winning film, My Mom and the Girl, based on Norma’s dementia, starring the late Valerie Harper (aka Rhoda of Mary Tyler Moore fame) in her last, poignant, wonderful performance. My Mom and the Girl is funny, moving and profound – a 20 minute celluloid love story from a daughter to her mum. I strongly encourage everyone to watch it. Here’s a Vimeo link to it: https://vimeo.com/266772460r

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I first met professional cellist Dr Claire Garabedian at a wonderful musical evening where three internationally renowned opera singers performed a piece written for audiences of older people and those with dementia.

She spoke then of the powerful communication – the dialogue, conversation, connection – between the performers and audience members. It seems to me that throughout her extraordinary life Dr Garabedian, who was born and raised in America, has been connecting and inspiring people through music.

Dr Garabedian has played with modern and Baroque orchestras in the USA, Japan and the UK, and chamber music with many of the world’s greatest musicians. She’s also played her cello in the most intimate of settings, at the bedside of individuals who are dying. 

It was while doing the latter that she experienced at first-hand what she describes as the “raw, intense realness of death and dying – and a purpose for playing music that is entirely separate from performing”.  

Fired up by this, she enrolled in an American course using music as a transitional healing force and qualified as a Certified Music Practitioner, enabling her to play her cello at the bedside of people in palliative care.  

Relocating to Scotland in 2007, she completed an enhanced palliative care course at the University of Stirling which led her ultimately to studying for a PhD in Sociology, exploring the effects of playing familiar music on a solo cello on the relationship between two listeners: a care home resident with dementia in palliative care and someone closely connected to them. 

Dr Garabedian then became a Researcher of creative arts and dementia at the University of Worcester. She now combines her quite brilliant talents, experience and knowledge to provide services for all sorts of people, from those with health conditions including dementia to their families and carers, to those who are nearing the end of life, to students and, really – as far as I can make out – anyone interested in exploring the use of music to support and connect us all.  

Dr Garabedian’s website can be found at drclairegarabedian.com

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