It seems like the passing of Christmas and the start of another year has brought lots of people down in mood. The beginning of the year is never an easy time as all you want is to see the signs of spring and warmer, lighter days. For those with dementia I’ve realised it takes on a different significance. I’ve noticed that for those I now know with dementia, this time of year poses more thoughtful and fearful questions…namely ‘was last Christmas the last one as the real me?’ and ‘ will next Christmas be different?’ A very sad but realistic question to ask due to the cruel nature of the disease.
On days when you are down it’s very difficult to ignore such thoughts. However, I’ve decided that I can’t waste valuable time worrying about things over which I have no control. I try desperately to live in the present – today. Look forward to plans in the future. For example, I’m looking forward to working with Bradford University in October – goodness knows what stage I’ll be at then but I have no control over the disease, which just leaves the ‘looking forward to working with Bradford’. So I’ll try to concentrate on the bits I do have control over.
Sadly, as there is no cure, I feel my generation and our families can only sit and watch our decline. Moreover, each day a sign or action can remind us of the inevitability of the disease. I’m not naive enough to think that if they found a cure tomorrow it would immediately mend brains already damaged. However, to sit and watch is wrong and a disservice to our children and the generations below us. We have so much to contribute – through making people aware of our experiences, making people listen, taking part in research – these are positives we can do. We don’t want or children to have that same feeling of ‘inevitability’.
One of the nicest outcomes for me from writing my blog has been to bring realisation to current and past carers as to why their loved ones behave in a certain way – their loved ones are a stage further down the line than me and can’t express what I’ve been fortunate to express through writing about it. Those are the valuable contributions I’m talking about. My fellow bloggers and I are able to bring the experience of dementia into the realms of those who don’t – surely this is valuable information. It’s also a way of taking the thoughts and fears out of our heads and into the written form. It’s a way of sharing our coping mechanisms in order to help each other and those who are looking for help. You can imagine the frustration and anger we feel at the inevitability of our decline but if we dwell too long on those thoughts we’d all end up queuing for the journey to Switzerland. I’ve got so much more to contribute until I succumb to those thoughts.
To do nothing seems cruel to our children; to do something, no matter how small, seems a wonderful gift to give.
No wonder we feel despair and have such dark moments at times. Allow us those moments without criticism. ‘Live for the moment’ is a message that comes out of the film Still Alice. I hope you’ll all watch it if the opportunity comes your way as it will give you a frightening glimpse into our world and our future and make you realise why it’s so important to live for the moment and try to make a difference.