Speaking about end of life is no easy topic for any of us, but Chris Carling wanted to share her parents' experience of ‘joint dementia’ – her mother had Alzheimer's disease and her father had vascular dementia, at the same time – in which she ‘gradually’ became their carer.
'But Then Something Happened: A Story of Everyday Dementia' was the result.
In her work as a coach, Chris helps people build their confidence and improve their performance at work, “with better communication, greater self awareness”. In a sense, her new – and wonderful book, might be an illustration of her own self-coaching.
When I read the book earlier in the summer, the experiences she describes and her own response, reminded me a lot of my own with my lovely Mum, whose journey provoked all my work – and left me wanting to know much more about Chris – and her reflections.
Chris notes that “visiting my parents became unpredictable" that she would wonder "whether Dad be low-spirited and taciturn, or chatty, if confused? Would Mum’s face light up when she saw me, would she have any idea of my name?’
Sarah: Your deep sensitivity to the moving goalposts of your relationships through their dementia journeys is movingly described. I'm interested to know how the experience of these unstable situations might have affected how you view life now and if so, in what way?
Chris: “My response to this unpredictability was a kind of matter of fact acceptance; I became used to accepting them and responding to them as they were on that particular day; not how they had been, not how they should be but how they actually were.
One consequence of this experience has been that now each encounter I have in daily life feels as though it matters in itself and for that moment. It’s meant that when I’m out and about I’m open to fleeting encounters – people you meet and engage with through a smile, a remark or sometimes a longer chat. Sometimes strangers, sometimes people I already know.
My experience with Mum and Dad and their unpredictability showed me that relationships don’t have to be long-lasting or permanent to have value. They may be permanent – of course I love and cherish my family and close friends – but they don’t have to be. This feeling that daily life is a series of encounters that all matter to different degrees has enriched my life and made me more open.
It has also meant that sometimes, brief encounters turn into something longer lasting. Recently I was on a train and I met a woman I hit it off with – quite quickly we got into meaningful conversation. Then, on the way back, she was on my train again. More conversation until we ended up exchanging contact details – and the other day we met up!”
Sarah: How did you cope with the very short time-frames that were the space in which Fred and Mary could connect meaningfully?
Chris: “I coped with the very short time-frames, I now see with hindsight, by trying to make them longer. That was the aim of the go-between role I took on – I was trying to help Mum and Dad connect meaningfully for longer. But why? I think it was because my parents’ devoted relationship was a constant for me – an annoying one sometimes as my Dad had always sided firmly with my Mum even when, in my view, she was completely wrong. By trying to help them connect meaningfully I was trying at the same time to keep this constant alive in the face of the changes that were clearly taking place within both of them.
By helping them connect even briefly, I guess, I was protecting myself from too much sadness, and also trying to protect my Dad from too much awareness of Mum’s deteriorating condition. He always knew her even though she didn’t always know him. I hated to feel he might be hurt. Actually on occasions my devotion to my Dad complicated things as Mum puzzled about all our relationships. ‘Are you married to him?’ she asked one day. ‘No, you are’, I replied, glad Dad didn’t hear.”
In one chapter, Chris describes a moment in which Mary forcefully indicates her disapproval of implied condescension.
Sarah: How did you feel after Mary patted you on the head? Did it change your ways of behaving subsequently and if so, how?
Chris: “It’s interesting that you picked out this scene as it’s the one I often read when I’m giving talks as an example of how people with dementia can always surprise you and probably keep much more awareness than we think – it’s just that they can’t easily express it.
My reaction to Mary patting me on the head was a mix of surprise – I didn’t get it immediately – and then guilt. I felt shocked at myself for having been so patronising, falling into the trap of believing that a person with dementia won’t understand when you are talking about them in their presence when I should have known better. But also, quite quickly I was fascinated by what had been revealed: that my Mum, whose dementia was quite far advanced by this time, who lived in a care home but didn’t appear to know it, could nevertheless not just feel normal emotion – annoyance at being patronised – but was also able to retaliate in quite a sophisticated way.
The incident made me more careful about making assumptions about what people with dementia do and do not understand. To recognise that they still have a world in which they live and operate – their world might be different to mine but, as in this case, it might also be exactly the same.
If I wasn’t being too hard on myself I might also say that what I call being patronising was actually born of concern about her wellbeing – specifically I’d believed she might be losing her language. I’d been looking to the carer I was speaking to for reassurance that Mum was OK, and not fully taking on board that she was following what was going on.”
Chris describes a child’s visit to the care home. "On Christmas Day a child visits".
Sarah: You say the little girl does not pass judgment, is just curious. I'm interested to know whether you adopted these techniques with your parents and what challenges there were for you in getting to know them more deeply? I'm also interested to know whether you saw carers adopting the same, or similar techniques?
Chris: “While my parents were in their own home and caring for them was at its most stressful, I didn’t have much time to really ask myself what was going on in their heads. But once they went into the care home my natural curiosity had space to surface.
In the book I describe a conversation with my Mum where I try to see what prevents her from understanding what we might be talking about – the way she describes it is - ‘I don’t have a picture’.
Looking back, I think I was often both a participant in engaging with them and at the same time an observer. So I’d discuss with my Dad what time it was when, in winter, he was confused by the days drawing in so early. And at the same time I’d be intrigued by the way he no longer understood that in winter the days were shorter.
I was intrigued by the way Mum could be in different time zones at the same time and the way she and the other residents of her unit in the home seemed to have to relearn familiar routines – such as where they were to have lunch every day. I didn’t judge them. Like the little girl I was simply curious that our brains can, with dementia, play tricks on us in this way.
One way I grew closer to my parents during this time was through play and touch. Holding hands, playing with fluffy toys, stroking them, being much more physically loving than I had been before their joint dementia – in this way their dementia was a gift that drew us together as they became more helpless and I became more protective.
The best of the carers I came across were also very physical. They were generous with their hugs and endearments. And the best of them were curious too. They knew that no-one can be written off – that hidden deep down in even the resident with the most advanced dementia was still a human being with their own personality. Because they worked with residents every day they got to know their deeper personalities and took pleasure and satisfaction from finding ways to engage.”
Thank you, Chris. Anyone engaging with anyone who has dementia, could learn much from this remarkable, perceptive and deeply affecting book.