People say, ‘This will be our first Christmas with the baby’ or ‘this will be our last Christmas with Mum’ or ‘this will be our most extravagant Christmas to date’ or ‘we’re going eco this Christmas’ whereas I’m saying ‘this will be our third Christmas with dementia’.
Ash was diagnosed in December 2017, five days before the big day so, as you can imagine, it wasn’t the most wonderful of all our thirty-seven Christmases together. He was white faced throughout while Jake (wonderful son) and I just about held it together. I don’t think I cried in public or at least only on Jake’s shoulder with his arm around me, but I certainly cried anytime I was on my own and I couldn’t see past the next day/hour/minute.
Of course, Christmas 2017 wasn’t really our first with dementia in it, but it was the first with dementia at the centre of our lives. They say when a person is diagnosed with the condition they’ve already had it for at least five years (and I can almost pinpoint the time when Ash began to change) but it was the first time we’d actually had to acknowledge that his problems didn’t stem from anxiety, depression or just getting older and it was the first Christmas where I couldn’t pretend that, if he could just get his confidence back, everything would return to normal.
So we got through that Christmas somehow and I moved into 2018 still unable to talk about it without crying. In fact, for the next three months I cried every single day and at one point I cried almost continually for three days straight as I mentally prepared for life without my best friend. However, C S Lewis said, ‘Crying is all right in its own way while it lasts but you have to stop sooner or later and then you still have to decide what to do,’ and he was quite right. I couldn’t keep crying so I gave myself a mental shake and decided there had to be another way, there had to be more to life than this and there was.
It wasn’t a quick transformation but over the year I learnt to talk about Ash and his dementia without crying; I watched him and learnt strategies which improved his life and consequently mine; I discovered we had a wonderful support network of friends who stuck by us, (every single one of them) and by Christmas of last year I was much more focused but still not as optimistic as I would have liked. I was still centred on what we’d lost, on what we could no longer do and on how much of my husband had disappeared.
We had a much better Christmas then last year. We were with family and friends, champagne was drunk, carols were sung and Ash joined in as much as he could but it still wasn’t quite as good as it had been in the past. I still wanted more and that continued over this last year until I realised that, by focusing on what we’d lost, I was in fact wasting whatever time we had left together and neither of us was benefitting from my frame of mind.
2019 has brought huge changes to our lives, each one removing another layer of confusion for Ash and I now find that life is looking better than it has for a very long while. This Christmas, for the first time in 37 years we’re going to be on our own. Not only that but for the first time ever I’m cooking Christmas dinner. Considering I’ve never before had to cook even a roast dinner this could fill me with trepidation or despair but instead I’m taking myself off to my favourite food hall (unfortunately not Harrods, we’re on an economy drive) to buy food stuffs with cooking instructions.
The day will be low key and there won’t be champagne or carols around the dinner table but I have a wonderful film to watch while Ash is engrossed in his beloved quiz shows and I’m looking forward to a Christmas where I don’t have to worry whether he’s OK, if he’s coping, what time we need to go home and all those other concerns that come with social occasions when dementias in your life. He’s no longer my best friend, my rock or my soul mate but we’ve been together for forty-three years and just because it’s different doesn’t mean it has to be worse.
- Written for YoungDementia UK in December 2019 by Jane. Jane writes a blog called Memory For Two to try to focus on the positive aspects of living a life affected by dementia, and to in turn keep her focused on the positive aspects of her and Ash's life together. She has also written about her experiences for our website here.