Prior to becoming a mum, I wrote extensively about my experiences of caring for my dad. In many ways those experiences were a unique preparation for parenthood. Not in a disrespectful way – I never viewed my dad as a baby – but in the context of another human being depending on you and how that is a responsibility unlike any other.
During my years caring for my dad I discovered the harsh reality of the way the parent/child relationship changes as dementia progresses. I became more like a parent to him, in terms of being asked to give permission for him to do things like going on day trips or having medical treatment, and he also needed me, or another family member or care worker, to help him to eat, drink, dress and wash.
From all of the experiences I had with my dad, some resonate more now that I am a mum, and in particular the occasions we would take dad out, for example to coffee shops, and how people reacted to him and to us. I spoke candidly about this in my film for the 2013 G8 Dementia Summit where I said:
“We would take him to coffee shops, and for the last four years of his life dad had a swallowing problem, which meant that we would need to spoon drinks into his mouth. And you will get looks from people, because they’re not used to seeing something like that, but that wasn’t going to stop me from taking dad out. He enjoyed it and the interaction was good for him.”
Now, instead of pushing a wheelchair into coffee shops I push a pram, and the reaction from fellow customers is very different. People come up to us to say how beautiful our daughter is, ask how old she is, comment on her smile and coo over her. All of which is absolutely lovely, but it does make me think. What I would have given for just one person to come up to us when I was out with my dad and greet him (yes, my dad, not me – a person with dementia should be directly addressed, not through a carer or family member), say something nice or even just smile at us.
Instead the looks were often cutting, pitying or even disgusted. The words were conspicuous by their absence, although you could sense the muttering disapproval in hushed tones around us. I’m not bitter, far from it. We had many happy times out together as a family and didn’t need anyone else’s contribution to those occasions to improve them, but a little kindness from strangers would have still been very welcome.
But I’m not naïve. Long before I was a mum, I wrote about the appeal younger people have that older people largely don’t. I appreciate that babies are a magnet for fascination and comment and I wouldn’t want to change that. I would just love to see a change in attitudes that reflects the value in every generation of human being.
As a society we have become more ‘dementia friendly’ in the years since my dad’s passing in 2012, and sitting in a local café recently with my mum and baby daughter, I was delighted to spot a ‘dementia friendly’ sign. I made a point of speaking to the café owner about it and what it meant to him, his staff and his business.
He spoke about how being welcoming and understanding towards people who have dementia has made his café a magnet for families who have a loved one living with dementia. People who are living with dementia, their partners and families come and spend their money in his café because it’s a place that makes them feel comfortable, where staff give them time, and are flexible and responsive to any additional needs within an environment that is easy to navigate and homely.
Having somewhere like that to go with my dad would have been wonderful, and anything that encourages more businesses to create an offering to customers that is inclusive towards people who are living with dementia is to be applauded. All the better too if fellow customers also adopt the mind-set of the people owning and working in cafes like this, and play their part with kindness and compassion.
I fully appreciate that to change attitudes to an extent that older people, and people living with dementia, are as welcome as cute, chubby-cheeked babies is probably unlikely, but if every parent teaches their child to value, respect and be kind to people of more advancing years and those who are living with dementia, then perhaps in the future we will be able to say that the UK really is a good place to grow older and to be supported, whatever life throws at you.