Discombobulated, isn't it just the most wonderful sounding word? and it so perfectly sums up how I and probably most other people have been feeling for a lot of the time this year. It means being in a state of confusion, anxious and not really knowing whats going on. I've undeniably been struggling to know up from down, left from right and as for what day of the week it is, well there'd be no hope if I didn't put it on the door of the fridge every day. Befuddled sums things up pretty well too.
There we were back in the first quarter of this year getting on with life taking it for granted that we could go out for coffee, meet friends, go to church, spend time with the grandchildren, hug people we care about, spend time in each others homes, have family parties, plan holidays, go to work and so many, many more things that were part of our everyday lives. Sammy and I also had time away from each other.
Then WHAM along comes COVID-19 and suddenly we're thrown into total confusion none of us have ever dealt with a pandemic before and it's quite scary. Suddenly we can't do the things we're used to doing anymore there's something dangerous out there that we can't see. Sammy had to stop going to the care farm she went to twice a week, we couldn't go out for coffee (a favourite activity) going to church couldn't happen in the way it usually did, we couldn't even go out shopping and had to rely on being able to get an elusive supermarket delivery slot or other people to get things for us and we're not used to depending upon other people in that way. Like all the other extremely vulnerable people Sammy was suddenly grounded big time (although others may call it shielded) and I had to protect myself in order to be able to be able to protect her, our only possible contingency plan is don't get sick. It really concerned me as to how Sammy would cope with all the changes however I should have known not to worry as she did what she's always done all her life and amazed me as she took it all in her stride and just got on with it. Although she did seem to find it a bit strange when I decided to try and recreate what should have been our holiday in Cornwall in our back garden. No mean feat when you live in Norfolk. I have to admit that although it didn't come close to being able to go on holiday it was quite fun making our own pasties, wine tasting, drinking lots of coffee and creating the quaint little village of Losttheplot, which at that point I most certainly felt I had and I'm not that sure that I've found it again yet.
I think Sammy has probably coped as well as she has with the changes because we've managed to find lots of different things to do at home, we've played swingball, hula hooped baked, painted, played board games, done jigsaw puzzles etc and we've also maintained links with some of the things we were doing before COVID-19. Contact with the farm has been maintained through video link, then the occasional visit to feed the pigs when no one else was there and now we go together one morning a week until it's safe enough for her to return to her pre-Covid level of attendance. Church has been interactive online and once restrictions started to lift Sammy's sister and her children have come and spent time in our garden, so although things have been different we've managed to maintain some semblance of our normality.
If I'm completely honest though I'm tired now and although Sammy is coping really well as the weeks go on I have to admit that I'm having times where I'm really struggling, I'm missing the couple of days a week that I had to myself. It was on those days that I'd go for a quite walk on the beach, meet a friend for coffee and a chat, read a book, do the things that refreshed me and strengthened me to keep on with my caring/supportive role. Over the past few months I like most other family carers have had no break at all from caring and as much as you love the person you care for it's tiring which makes finding time for self care possibly even more important now than it was before and it's always been of utmost importance. But how do you manage to look after yourself when you get no break from supporting the needs of another person? I so wish I had a one size fits all answer or any real answer but I don't. Because of our different circumstances, different needs, different personalities we're all going to need something a bit different. What I do know though is that finding and prioritising that time for yourself although at times extremely difficult to do is so important. Even if all you can manage some days is ten minutes on your own with a cup of coffee or five minutes on your own in the bathroom take it, use it and cherish it to get you through the next bit of the day and if you can manage to take a couple more five or ten minutes throughout the day take them and enjoy them without guilt. If you can take even longer go for it. I've actually managed to spend a couple of hours today making bath salts and other lovely smelly things something I really enjoy doing and and find relaxing with the added benefit that my house is now filled with the lovely scent of peppermint and lavender which is helping me to feel quite relaxed tonight. To be able to do this for myself though I had to decide that it was okay for Sammy to spend most of the day playing games on her ipad and watching films, not an easy decision. Another day Sammy and I will probably do these activities together, but today I needed to do them for myself. It's constantly trying to keep a balance between both our needs.
As carers taking time to look after ourselves does not always come naturally or easily as we're constantly aware that we need to meet the needs of others, but I learnt a long time ago, though I frequently forget, that if I don't look after myself I'm really not a lot of help to anybody else so self care is extremely important. I know that Sammy benefits far more from my being relaxed than she does from my being tired and stressed out. When I've remembered to fit in taking some time for myself and doing something that I enjoy I'm far more likely to find pleasure alongside Sammy in yet another game of Swingball or for watching a film that I feel I'm watching for the fifth millionth time (I think I know nearly every word to Four Weddings and a Funeral) than I am to think ohh for f....sake must we really do this again, because yes we must. So as hard as it can be at times and even more so during these discombobulated times, all you carers and parents out there remember that you are important and amazing and what you do is so valuable and if your not functioning well the people you care for are going to struggle too, so whenever and whenever possible find time for the things that bring you peace, joy and refreshment and enable you to keep going and caring for those you love one step at a time. 
