Behind every illness, every disease and every condition there is a real person, yet when it comes to dementia it is not the person living with it that needs reminding of this, it is the society they live in.
Sadly far too many people cannot see past the manifestation of the dementia. For them, the symptoms the person is displaying are all there is to that person. Everyone has a ‘Life Story’, however, and just because they don’t all make it onto ITV it does not mean that they are any less valid.
Amongst our favourite things at one of my dad’s care homes was how they encouraged relatives to compile memory boxes for their resident, which were then put on the wall directly outside their room. You could put pictures, small items of memorabilia, and anything else that represented the life the person had before they had moved into the care home.
I very proudly spent a day compiling dad’s, which consisted of numerous captioned pictures that charted his life from being a strapping young man in his 20’s with a cheeky smile, to photos of him with me and my siblings as babies. In many ways, however, it was even more enjoyable when other relatives had done theirs, and you could walk the corridors and read about the lives of residents that we had grown to know and love.
Their stories showed the love and laughter they had enjoyed, their marriages, children, holidays, careers, passions, pleasures and hobbies. I would honestly say that despite the advanced dementia many of these residents were living with, you could see glimpses of the lives they’d had in everything they now did, you just had to take the time and trouble to appreciate that.
The perfectly dressed lady who had come into the home with a wardrobe of smart work clothes and some sparkly separates; she’d had a high-powered job and enjoyed cruises with her husband. The man who loved to wander outside and was always up early; he had been a farmer. No matter who they were or where they were from, they all had THEIR story, and in many ways it was even more absorbing precisely because they could not tell it anymore; almost like looking through a window into their heart.
We would talk at length to anyone who would listen about dad’s life, his likes and dislikes, the things that made him laugh, the things that upset him, his achievements and the causes he believed in. Anything just to reinforce the point that he had a history, a life before dementia, and that the dementia, whilst it had taken so much away from him, would never be able to erase that.
Unfortunately the world is not quite as enlightened as I would like! As a family we were stared at when taking my father out on day trips: he had a tendency for making incoherent noises, something we had got so used to we never thought anything of it until we would wheel him around a public place; people would often look more than twice and then steer well clear.
Many people love to tut and disapprove, making it very clear that they think your loved one’s behaviour is either deliberate, or that you can somehow prevent them from doing whatever they are doing that it is perceived they should not be. Imagine their displeasure when, because dad had to have all his drinks thickened during the last four years of his life, we would spoon them into him. Had I been feeding a baby no one would have batted an eyelid, but because he was an adult this caused most people to double take, whisper and turn their heads.
The lack of wriggle room in people’s perceptions is largely down to the fact that for so long dementia has been hidden away, and those living with it excluded from society. A lot of that is as a result of stigma (which I wrote about here), and tackling the misconceptions and fears associated with it will make a huge difference in the ability of society to see the person beyond the dementia.
Dementia is not who someone is. They are the same person they always were, it is just that the disease they are living with makes it harder for them to communicate their personality and uniqueness, and for society to appreciate who they really are. Too often people like to form snap judgements, but dementia will cloud that process. Remembering the person requires more considered evaluation, but it is far more rewarding.
It is also worth remembering that feelings and emotions do not ever leave a person. They may be displayed in a different manner due to the dementia, but they are no less powerful, and if society can become more mindful of that it will surely be a better place for everyone to live.
Until next time…