Chris Roberts’ Story

Jayne, Chris & Kate Roberts

      Jayne, Chris & Kate Roberts

The first thing I’d like to say in this blog is: thank you.  I’m not a fan of capitals, but if I were those two words would be in the headline writer’s huge 72 point, all upper case.

My 72 point thank you is to Chris and Jayne Roberts and their family for having the courage to open up their lives – touched, moved and transformed as they all are by Chris’s dementia, which he developed at 50.   Over almost two years the Roberts, who live in North Wales, allowed CCTV in their home and used video diaries.

The result was an exceptional BBC Panorama documentary which went out this week.  Often hard to watch, particularly if, like me, you have met Jayne and Chris, it was frequently sad, always insightful and informative, and occasionally surprisingly uplifting.

I have seen them both speak at dementia conferences (dementia is the umbrella term for over 100 types of the condition, of which Alzheimer’s, which Chris has, is by far the most common) and what struck me as I watched the programme was that their life is so very much harder than they make it appear.

Kate Swaffer, an Australian living with younger onset dementia (when someone is diagnosed under the age of 65), says for much of the time she “feels like a swan, calm on the surface but paddling faster and faster below to stay afloat”.  She also says, “The paddling is imperative to maintain my dignity, as it is humiliating to show the symptoms”.

I kept thinking of Kate’s words as I watched 55-year-old Chris’s constant, very difficult daily struggles.  I’d had no idea of how severe his dementia had become, despite having seen him on several occasions.  To me, he was a sharp, clever and inspirational man.  He is.  He still is.  (Though he has now bowed out of the conference circuit).  But what efforts he, Jayne and their 18-year-old daughter Kate – who has stayed at home to help support her dad – have to make to keep their own daily show on the road.

The importance of what this family have done cannot be underestimated.  That someone as immersed in the subject of dementia as I am can have their eyes opened by an hour-long programme is quite something.  A part of me knew how hard life must be for those with dementia, such as Wendy Mitchell, Jennifer Bute, Ken Howard (to name but a few of the many with the condition who work tirelessly to increase awareness and knowledge of it throughout the UK and beyond).

But though I thought I knew, I didn’t really.  This is what the programme showed me.  For it to work required unflinching honesty – and this the family gave us.  In spades. Chris and Jayne have five children who all appeared on the programme.  Their candour in front of the camera, difficult as it obviously was to deliver at times, is an invaluable gift to the rest of us because it increases immeasurably our understanding of this most misunderstood (and feared) condition.

You don’t have to take my word.  National newspapers in the UK, from the Daily Telegraph to the Sun, ran long pieces on the programme (I was delighted that most picked out, as I did, Chris’s wonderful soundbite, “Don’t be scared, live life.  Take it by the danglies and run with it”).  Chris, Jayne and Kate also made a typically assured and articulate appearance on BBC Breakfast TV.

To be honest, the family are a journalist’s dream.  Not just because of their honesty – we hacks really do like honesty.  Honest.  But because of their fluency.  Here are a few of their best statements and it is, of course, the truth behind the language that makes it so powerful.

“The person I miss most is me”, says Chris, early on in the programme (which, I should add, was beautifully constructed and sensitively made).

Soon after he was diagnosed five years ago Chris chose the care home he wants to live in when the time comes.  I’m not sure I would have had the guts to do it, but Chris perceptively realises that in doing so he takes the burden off his family.  “It’s entirely my plan,” he tells the camera, “ – though I do have dementia”.  His ability to find humour in the worst of situations is one of his many great characteristics.

He’s astute.  Having lived five years with Alzheimer’s, his advice to others is, “Don’t forget the children”.   Through my writing I’ve discovered that how adults with younger onset dementia choose to include their children is important, delicate and difficult.   “I don’t enjoy things anymore,” says Chris. “But I’m probably the lucky one because I’ll forget”.  He may forget, but he’s very aware of the future implications of his condition on his loved ones.

Jayne is equally candid.  One of the most moving moments was when she admitted that, much as they both needed some respite, she wasn’t prepared to let Chris take it – not for his sake, but hers.  “I can’t risk him going in for a week and me not wanting him back”.  It was a breathtakingly honest statement to make on national TV. It will help thousands of others experiencing the same painful, conflicting emotions.

There was a turning point in the history of the public’s perception of cancer.  It came in 1965 when Richard Dimbleby, the “voice of the nation”, helped banish the stigma of the Big C by announcing on television that he had testicular cancer.

The Roberts family may not be the voice of the nation, but they are the voice of the 850,000 people in the UK with dementia, particularly the 40,000 with young onset.  Through their courage they have roared – with brutal honesty, yet with dignity – and their voices have been heard, written about and talked about as never before.  They’ve made a huge (72 point, capital-lettered) difference and, as a society, we owe them an enormous debt.

13 Responses to Chris Roberts’ Story

  1. Beti George 4th June 2016 at 5:37 pm #

    Well said. At last a programme that dealt with dementia in an honest, unsentimental way. I too have come to know Chris and Jayne through various conferences etc, and my admiration of them is huge. Also Kate of course. Life isn’t easy for them but Chris’s “live life” advice is typical of his selfless attitude.

  2. Pippa Kelly 4th June 2016 at 5:54 pm #

    It is indeed, Beti. Thanks for taking the time to comment. What a family the Roberts are!

  3. Zoe Harris 4th June 2016 at 6:15 pm #

    Well said, Pippa. All of us raising awareness and trying to drive up standards of care for people with dementia and their carers owe Chris, Jayne and Kate a huge debt of gratitude for sharing their experience. It was very difficult for me to watch at times, particularly as some of what we see Chris struggling with – getting lost in his own house, finding strategies to avoid having to use a knife and fork – brought back memories of my late husband Geoff having to face the same issues. I should have recognised how much effort Chris has been putting into presenting a capable front at conferences, and undoubtedly paying the price later; I totally agree with you that we owe the Roberts family an enormous debt.

    • Pippa Kelly 5th June 2016 at 10:38 am #

      Thanks, as ever, Zoe. Can I just say we also owe you a debt for all you do (as opposed to me and my scribbles!)

  4. Mary E. Wakeford 4th June 2016 at 8:18 pm #

    Pippa, I look forward to each new edition of your blog. Thank you for speaking out an for helping others speak out about our diseases, dementias. I’ve made a choice to let people in my surroundings know that I have a diagnosis of Alzheimer’s and that I am in the early stage. I rarely feel that I have been able to communicate with my friends and others about what it is really like. Your blog supplies such a treasure trove of information. Sometime, not too far away in the future our society will begin to understand. Then they will be able to take comfort for themselves and help everyone else cope as well. Thank you.

    • Pippa Kelly 5th June 2016 at 10:39 am #

      Thank you very much Mary, and good luck with everything.

  5. Abi Almond 4th June 2016 at 10:40 pm #

    It was indeed a very powerful & illuminating program & very brave of the family to do it – huge respect to them & thanks for educating me.

  6. Julie Twaddell 5th June 2016 at 9:54 am #

    Thank you for the insight. This will, undoubtedly, make me a better carer of my mum who lives with dementia.

    This should be mandatory viewing for everyone, tough at times though it was. Humanity in all it’s awesomeness. Thank you.

  7. Ian 5th June 2016 at 4:24 pm #

    I watched the programme and thought it was indeed exceptional, as you say Pippa. Honest, as far as any viewer can know for sure, and involving, engaging and more than interesting. The extent to which it informed anyone about dementia, in general, cannot be known, but it certainly informed about the way that one single family copes. For that, I can only applaud the Roberts Family. I doubt that many of us would consider having 7 CCTV cameras positioned in our home, and a film crew on board too, for 2 years or whatever it was, so hats off to the family for that.

    However, I’m not sure I agree with you when you suggest that “The Roberts family ….. are the voice of the 850,000 people in the UK with dementia, particularly the 40,000 with young onset.”

    I’m guessing that Chris and Jayne would perhaps agree with me that they are not ‘the voice’ of anything other than the voice of their own life that has been touched and changed by dementia.

    So easy for you, Pippa, to cite and link to all the names of the people you know and meet on the ‘circuit’ but there are so many others who are not on that circuit, and nobody speaks on their behalf. Many people take issue with some of the pronouncements that come from some of the people you mentioned as being on the ‘conference circuit’ but they have no way of making their voices heard. Unless they jump on the circuit. That’s impossible for far more people who are ‘not on the circuit’ than there are people ‘on the circuit’ that you mentioned.

    There is so much more to dementia, because of each and every single experience being different from another’s experience. Nobody can speak for everyone with dementia.

    • Pippa Kelly 6th June 2016 at 12:11 pm #

      I completely take your point Ian. I strive, in my writing, not to be glib or make things seem easy, or one size fits all. One person with dementia is, indeed, just one person with dementia, a condition that affects everyone differently. Your point is very well made. Thank you for taking the time to comment, and I know exactly what you mean. To a great extent, I only see a snap shot. I think, because of Jayne and Chris’s honesty though, the programme really may help some people. I hope so anyway.

  8. Gill 6th June 2016 at 9:32 am #

    Thank you for this article. I know Chris although have never met him and he really is an inspiration to all of us living with dementia. I am in awe of his family, and feel for them.

    He has been so encouraging to all of us who speak and tell our stories in the hope it will open up complete understanding of living with dementia, both for us and our families.

    I cried watching the program, both for Chris and his family and for myself also as this is my future. I live alone and know that I must prepare for my future now.

    • Pippa Kelly 6th June 2016 at 12:12 pm #

      Thank you Gill, and good luck with everything.

  9. Jacqueline Crowther 7th June 2016 at 8:46 am #

    wow…… “I have dementia, dementia doesn’t have me… don’t be scared….live life take it by the danglies!” ………thank you Chris, Jane and all your family

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