An interview with James Murray-White and his mother who has Alzheimer's disease. Part Two
Posted Mar 15 2014 9:50am
The story so far... First I wrote to James... "Very sorry to hear about your mum. It's such a journey, dementia, and I hope there'll be an opportunity to talk about it some more sometime. It's wonderful for her that you are there to support her. As to the film, yep, got it. Shibley has a mention of me in his book. I'll send you some questions. Thanks again and very best wishes to you both."
Thinking that his fulsome reply deserves a proper airing, it's now divided into two parts.
The first part (his response to questions 1–3) was published here on 7 March – you can scroll down to read it. Now, here's the second part...
4 How has your Mum influenced your life since then?
Mum’s main influence on me has been creatively. I saw her creative expression flower into real tangible things (and growing up in a house full of her cups and plates was wonderful: she even made a whole dinner set for me to start university with), ability to communicate, explore artforms, and chiefly how she just got on and lived to the best of her ability. Seeing how mum coped after the divorce has certainly made me a more resilient person: I’ve had high highs and deep lows both in my personal and professional lives, and also been out exploring at the further edges of spiritual and creative expression, on some extraordinary journeys!
5: How has your communication changed over the last few years?
Mum has just asked me “did they shart?”, and earlier in response to her breakfast, she said: “It’s gomodgen”. Her language has changed rapidly over the past year or so, with much more searching for words and creating a whole new language, which has it’s challenges & humour as me and the carers try to interpret and respond. I loosely follow Penny Garner’s approach of the SPECAL method, which places me right in mum’s reality, and doesn’t try to disagree with anything she says, or try to bring her back to the here and now reality as I know it to be.
I’ve been using SPECAL for about 3 years and I see it’s benefits as much of mum’s anxiety has dissipated, and we don’t get into those scenarios of ‘going home’ or ‘take me home’ anymore, as are quite common with types of dementia.
I often feel that I should be filming more, given the widespread success and interest in the film. In many ways this is a more interesting time, as mum is stiller and more chair bound, and the dementia has obviously progressed, and recent episodes have seen sharper deteriorations.
But I’m not doing it, partly as I feel it will be more intrusive now (despite having smaller cameras), and also as that was the time of the son & the filmmaker exploring dementia, this is the time of the son bonding further and caring closer for a mum at this late stage. I admire filmmakers who have filmed right through the journey: the recent German director David Sieveking filmed his mum’s journey into late stage recently in the documentary ‘Forget Me Not’, and Malcom & Barbara Pointon’s journey, as filmed by embedded maker Paul Watson in ‘Time’s Arrow’ has been a big inspiration to me. When mum was diagnosed and I was overseas, looking to see what had been made about dementia in terms of documentaries was one of the first things I did.
I may do more occasional filming, and with the footage that became ‘Keeping Mum’, have no plan for it but store it away on a hard drive until the time comes to use it.
It’s also become a much more non-verbal communication between us.
Sitting close by, holding her hand (and navigating the strong grip!) or me finding her often, and coming up to her with a smile or a kiss on the cheek, which she responds to well, and I hope knows that she is loved and cared for.
6 What is it in your lives together now that gives you both the most comfort - what do you like to do together (however small)?
This last few weeks have been very challenging, with mum having several falls, and so being investigating for UTIs, and trying to improve her mobility within the home. There have been some carer issues too, and as well as greater medical interventions due to the falls, and with OT and social work input, life has been very intense here.
So it is a question of finding quiet time amongst these visits by professionals, mum’s visits to the day centres and other activities, and me trying to maintain some semblance of a professional life in film and media!
Mum at this stage just enjoys company, so it is remembering to be with her, sitting, perhaps chatting, drinking tea together, watching some TV. The weather has been increasingly spring life over in the Eastern Counties, so I do like to get mum for a walk around the garden. It’s a small corner spot, which she lovingly tended over the years and used to employ a gardener to maintain. I’m planting veg and shaping it as I love to get my hands in the soil. I’ve been using many of mum’s pots as plant pots, and the garden is full of these and interesting pottery shapes, masks and figures! Just yesterday I found an ogre’s face that I’d never seen before! So I hope as the mobility improves with a carers help mum can spend more time in the garden again – although not as you see in the film, with me press-ganging her into exercises!
7 What would you say to help others who might be starting out on a similar journey to your own?
First of all, accept the sense of shock and trauma that a diagnosis can bring. This will take time, and don’t be afraid to seek help from wherever you need, and do get all the questions you have answered. I hope that the diagnosis is given with as much support and care as can be given.
This is such a strange time, immediately post-diagnosis, and this can be experienced as a kind of wilderness period. I was abroad when mum received her diagnosis, and although she and John seemed to deal with it, I can’t imagine the sense of being told. As soon as I returned to the UK we went to see the consultant (who has actually become a friend of mine and a guide on the wider path of activism and creativity around dementia) and I still remember mum’s sense of bewilderment and the oddness and sense of detachment of that consultation.
My then partner had some scientific knowledge so she asked some medical-scientific questions, while I pondered on the impact and psychological effects. Mum’s only question was would it affect me, which I’m still moved by when I think of this moment and her concern.
Secondly, address the practical issues immediately. It may be that someone else can be doing this, within the family or a close friend, but from my personal experience these matters need to be addressed while the individual with the diagnosis is felt to have full understanding and consent.
Be steered by doctors, solicitors and the diagnosing consultant if possible, and specialist helpers available through the NHS, the Alzheimers Society, blogs and activists in this area. Ask those in similar situations, and don’t be afraid to show your emotions and be raw as the diagnosis settles. The practical concerns will include possible medication, and power of attorney,making sure wills are in place, and a discussion about immediate and/or future care issues.
I had a sad session in the doctors surgery where he felt mum wasn’t able to understand enough that he could sign the power of attorney form, and a local solicitor who I left in charge of other legal matters when I returned to my life abroad, made a mistake and left it too long to get mum’s written consent for some other things.
At a recent film and science event where I was on a panel of filmmakers and dementia researchers, in response to a question I answered that the experience of dementia in the family was like a ‘juggernaut’ crashing into you. There has been a whole mix of sadness, loss, grieving for losing the living as communication, memory and mobility all changes and rescinds into themselves, but lots of humour and flashes of cognition and ‘the old person’ emerge – as they will.
It’s a real mish mash of stuff, and if I can say anything to others who are starting on this journey it is that this is how it will be, and as long as you’re all strapped in – together – for the ride, you will become stronger, more resilient, probably even more creative and resourceful, and a more human human being.