Excellent down time

Have you been waiting with bated breath to see how our weekend away went?  If you have you'll be pleased to hear that all the planning worked and the weekend was a success.  There was a moment when Ash thought he'd lost all the photos he'd taken over the four days but they were found so that was ok and by this morning he was ready to come home but taking everything into consideration I think it can be counted as a victory over dementia.  We ate the meals we'd planned, we did the walks we'd planned, we watched the DVDs we'd planned and Ash even managed to get us all shouting answers at the television during the one episode of The Chase we watched each evening.  As always this wasn't just a lovely few days away with wonderful friends but a learning experience for those of us not living directly with dementia.  So what did we learn?

  1. If we're going away for a 'weekend' make it Friday to Monday.  Ash didn't quite understand why we didn't come home yesterday.
  2. Use books and leaflets showing detailed walks rather than an OS map.  Ash used to be our map reader but now can't cope with the responsibility and the discussions which would have ensued each time we got lost.  This time L found a folder of walks and we planned from that before we went.  Am proud to tell you that we didn't get lost once and that's a first.
  3. Be prepared to be woken in the night.  One night Ash woke in a panic not knowing where he was but is now at the stage where he feels able to admit it.  Once I'd reminded him where we were and who we were with he went back to sleep.  
  4. Don't plan too much and definitely not more than one thing in a day.  We walked every morning then read, listened to music or napped in the afternoon.  This meant that when Ash said on waking 'what are we doing today' I could just say 'going for a walk' which he could remember.  No stress, no panic attacks, no repeated questions.  No need for any of those things - we were just going for a walk.
  5. Organise something to keep Ash occupied while we pack up.  He can't help pack or clear away as he finds it too stressful but neither can he cope with sitting down while others clear away around him as he feels useless.  I realised this when I woke up and mentioned it to L.  We decided to ask the men to walk the dogs which was not only useful, it gave Ash a purpose and meant that everything went like clockwork.
  6. The main thing we learnt I think was that planning does work.  Because we had planned so carefully we knew exactly what was going to happen and when which meant we were confident about the whole trip.  This confidence was then absorbed by Ash and he was relaxed because he knew, however subconsciously, that he had nothing to worry about.
One thing did strike me about our current life - for many years I had a very stressful job and we went on holiday several times a year just so I could get away.  I used to dread coming home as I never knew what would be waiting for me.  Then I changed jobs and when we went away I looked forward to getting back to work which was a real breath of fresh air.  I realised this morning that there was no dread about coming home but neither was there a feeling of looking forward to being here.  It just was.  I couldn't work that out but then realised that dementia isn't something you can get away from.  It's with you every second of every minute of every hour of every day wherever you are.  There is no escape and that's why it's important to put those strategies in place which make life comfortable for everyone, to appreciate and remember the good times and to accept that life now is different to what we had planned.  Not so very different though.  It may have taken hard work, planning and a determination to make it work but we had a great few days away and it made us feel 'almost normal'.   


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Comments

Lesley said…
Me freaking out about having 'lost' a holiday booking was far worse than Ash with his photos - we all need a little tlc and understanding at one point or another!!! Excellent few days away tho. We've tweaked our formula before and no doubt we'll tweak it again in the future - here's to continued good times!
Sarah H said…
Glad it all went well - well done you ‘planners’! 🙂