‘Stay in,’ they said, ‘Keep away from people other than family for at least three weeks,’ they said and I thought, ‘Well how hard can that be? That’s our life anyway so what’s the difference?’ Except our lives are never as we think are they? I knew that, since Ash’s diagnosis, life as we knew it had become narrower and narrower and in my head we rarely left home or saw anyone but of course that wasn’t quite true, at least not for me.
Ash has never been a social butterfly even before dementia started to consume him; he liked meeting friends or going to local events if he / we were invited but he was also more than happy to stay at home and perfectly comfortable in his own company. As for me, in the past I worked long hours and seemed to have little time for a social life so when I had to give up work in order to support him - I still find it difficult to call myself his ‘carer’ - I enjoyed spending time with friends.
Not all day, at least not recently, but mornings or afternoons so that I spent half the day with Ash and the other half with people who wanted actual conversations. I went walking twice a week, I met friends for coffee or lunch, I called round to see people and it was all rather jolly and relaxed. Only I hadn’t realised how much I needed it all just to keep my brain working so the first day of the lockdown when reality hit I wasn’t quite sure how I was going to survive and I had a meltdown. I’ve had a few more over the weeks that have followed but only minor ones and all in all I think this slower pace has been quite a success as far as we’re concerned.
So how has the lockdown gone? What difficulties have there been, what changes have I made and how have I kept us sane? I say ‘I’ in this because of course I’m the only one here who can make those changes. I realise that there are people out there living with dementia who take responsibility for their lives and what’s happening to them but Ash isn’t one of them. He reacts to my moods, to events as they happen and to his environment but is never proactive so it’s all down to me and I’m actually feeling quite pleased with myself. In the absence of my ‘normal’ life I’ve discovered the joys of regular video chats with various groups of friends, exercise and peace have come through long walks on my own along back lanes devoid of traffic, interest has been through gardening and allowing myself to read books during the day has meant I’ve been able to escape into another world whenever I want to.
Ash was initially chilled about the whole thing but then became anxious about what we could and couldn’t do. Could we sit outside in the garden? Could we leave the windows and doors open? Could he take the dog for a walk and if so how often? This was a little stressful at the beginning but gradually, as the weeks have gone on, he’s begun to relax and as he’s relaxed he’s become so much more capable. Jobs are being done around the house and garden that have needed doing for at least a couple of years and the more he achieves the more capable he becomes and the greater his self esteem. Not only that but he's become more talkative, he’s rediscovered his sense of humour and he seems to wake in a morning with purpose in his life once again.
As we settle into our extended lockdown I'm beginning to think how this will shape our lives when it's all over. Will I stay at home more? Will Ash continue to be his new relaxed self? How changed will we be when we emerge, blinking, into the sunlight? We can't go anywhere or do anything so it seems to me that now is the time to start pondering these things and to consider the changes we should make and the changes we want to make.
William Morris said, 'Have nothing in your house that you do not know to be useful or believe to be beautiful,' and I'm thinking of applying this to my life. We have lives and houses full of clutter and, because we're so busy, we don't have time to wonder whether we actually need it all so this seems to me to be the ideal time to consider what I need, what I want and what I can discard and I'm not necessarily talking just about things. A friend has been helping me to clear my mum's house and she's ruthless. Each time we go over she gives me three cardboard boxes with strict instructions for each: One is for stuff to keep, one is for throwing out and one is for giving away and I have to have a very good reason for keeping things. It's worked well so far and I see nothing wrong with doing the same with the contents of my life at the end of this.
So what will I keep? Out of the new things that have been introduced over the last three weeks I will definitely be keeping the video chats which have been a lifeline, the daily walks will stay, regular walks with the dog will be kept, reading during the day and not just at night when I'm so tired I can hardly see the words will stay and generally not rushing around trying to fit yet another thing in will remain. The main thing I'm going to add is a more adventurous approach to my weekends away when Jake comes to stay. Until now I've gone to mum's empty house and relished the peace and quiet but now I think I can get that peace and quiet at home so time away can be spent doing something interesting. What I’ll get rid of has yet to be decided.
- Jane writes a blog called Memory For Two where she tries to focus on the positive aspects of living a life affected by dementia. She also manages a Facebook page for people who share her ethos that it's not all doom and gloom...