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Showing posts from February, 2022

A little rebellion doesn't go amiss

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The question with friends last week was 'is it ok to go to the cinema at 10.30 in the morning?'  and the quandary was prompted, as so often, by memories of our teenage years when none of the three of us were allowed to watch television in the daytime.  Apparently, according to the adults around us, there were better ways to spend our time. We decided that now we were gown ups it was ok but the discussion then moved on to whether it felt uncomfortable or decadent.  I opted for decadent and was then told that was my teenage rebellious streak coming out (one of the difficulties of having friends who've known you forever is that they remember lots of things you'd rather they forgot). So I used to be rebellious and that got me thinking.  Maybe, when I'm not quite happy to settle for 'in the moment', when I feel a need to plan for the future or do something just a little bit different, I'm rebelling against the dementia that plays such a big part in our lives.

Sometimes it's worth persevering

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This post is for those of you out there who desperately need some time to yourself but, somehow, haven't yet managed to organise it.   From experience I know there are so many reasons not to.  Living alongside dementia is all too often fraught with difficulties chief amongst which is guilt because you want that time to be yourself.  Then there's the exhaustion which comes with 24 hour responsibility, with the strategising, with being on constant alert for things which may go wrong, all of which mean that sometimes you can't see the wood for the trees. All of those things however can also combine to create the perfect storm and suddenly you're not quite giving the care that you could if you would only take time for yourself too. I started down this road nearly a year ago and we've certainly had our ups and downs along the way.  First I had to find someone, then I had to work out how to get Ash to accept her, I had to work out how long I needed each week, which day wo

Random things make me smile

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 A very random selection of things have been written on the notepad over the past few days and added to the Positivity Jar. So far this week I have (....... at this point I couldn't remember so fetched the slips themselves which is proof positive of the benefits of the jar I think) cleaned out my office from top to bottom and side to side; danced in the tanning booth while starting to build up some colour ready for those shorts coming out; had a coffee by myself in one of my recent coffee shop finds; been to the cinema with two of my very best friends for a 10.30am showing.  Felt very decadent as we watched Death on the Nile when, as my mum used to tell me, there were far more useful things to be doing; had lunch on my own after the film while watching the world go by and listening to jazz playing on the sound system; driven to the beach with Ash where we had coffee/tea in the warmth of the cafe as we looked out to sea and watched people walking on the sand.  For once Ash wasn'

Getting the most out of life

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Someone said recently that any day of this new life where nothing dreadful happened could be counted as a positive day.  The comment was in response to the post on my Positivity Jar and I read it and, at the time, agreed.    I really did agree because those days are special and can't, mustn't, be taken for granted.   Since then however I've been thinking.   Life with the old Ash was lived in technicolour; it was fun, full of adventure and I never quite knew what was coming next, which is why I sometimes find myself in a tangle of thoughts now.   I am grateful for 'uneventful' days, the ones where nothing bad happens and the ones where we both get to bedtime unscathed but that can't be all there is.  All those years with 'my' Ash gave me an appetite for so much more and this life feels grey by comparison. Ash came into my life properly when I was fifteen and I'm who I am largely because of him.  He taught me to have fun, that life was for living and t

I've come a long way

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 Every time I see a meme or a quote that I like I save it and, somewhere along the way, I share it with all of you.   This morning I was looking for something to post on the facebook page and I realised that my folder is full of memes that no longer fit my life or the way I'm feeling now.   The first one to stand out was 'If it was up to me it wouldn't be up to me' and I remember how I felt when I first saw it.  I hated to be the one making decisions, I felt I was letting Ash down by not including him in the decision-making process and I was weighed down by the responsibility.  Now, however, I make decisions all the time without giving it a thought and that particular meme most definitely doesn't apply. I started to work my way through them all and wondered whether or not to delete those that no longer apply but something stopped me.  It was interesting, I realised, to see how far I've come in the last four years and how much I've changed.  Instead of deleti

The Positivity Jar

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 You may remember that at the beginning of the year I started a Positivity Jar.  The idea was that at the end of each day I would write on a piece of paper something lovely that had happened.  I would add the piece of the paper to the jar and at the end of the year when I emptied it I would have 365 nice things to look back on. Ever willing to bring extra positivity to my life I found a jar and bought some bright post-it notes.  I placed the two things on the table in my bedroom along with a pen and prepared to be wowed by the hidden events in my life. Some of you said you were going to try it and I'd love to know how you've got on.  For me it's been an interesting experience. To begin with it seemed to work quite well but then I became dispirited because there were days where, however hard I tried, there was nothing that stood out as being fun and I started to think that my life was very boring indeed.  Some days I was reduced to writing 'watched ........ on the televi

A barometer of change

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 Yesterday was grocery shopping day which is something Ash always gets excited about and it's something, I've realised, that's a barometer for how our life together is developing.  Once a week we do exactly the same activity in the same place, at the same time and in the same order so what better way to chart the changes than this. I thought yesterday about the part I used to play in stocking the kitchen cupboards, not so much in the early days when it was a joint enterprise  but in the years between Ash's retirement and dementia coming to call. In those days I played almost no part whatsoever.  I had nothing to think about because Ash did it all.  He scoured the cupboards and made the list, he went to the supermarket, he bought everything, brought it home, put it away and then, throughout the week, took it all out again and cooked our meals.  He loved cooking, liked to experiment and never followed a recipe.  Sometimes it made for interesting combinations. Now I'm

The future is looking just a little bit brighter

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  Do you ever feel this is going to go on for ever and that all your fun is over?  This question is for those of you living a dementia affected life but I'm sure there are others living in dark places too who will recognise the feeling.   That was me at the beginning of last week.  I couldn't see an end to it all and I felt I was losing myself again. I also have a feeling however that winter had got into my soul.  I couldn't see the light at the end of the tunnel then but as the week went on my mood improved and I began to look at it all with new eyes. Now we're leaving the dark days of the year behind it feels as though the thoughts in my head are lighter and brighter with just a touch of spring entering into my step.    This morning, for the first time in weeks, I woke with an urge to get up and immediately start my day rather than hugging the covers tighter and hiding from the world and that spoke volumes. To help me along the way, a few days ago I had an email from

One of those days

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 If I'd written this yesterday as I meant to I'd have been telling you all about my/our lovely weekend. S came on Saturday so that I could meet Jake and the 8 year old for lunch and then a visit to the cinema.  This was a wonderful treat for me and then I got home to the news that Ash had been really engaged and talkative all day which made things even better.  The fully engaged mode was in evidence all evening too which made for a great end to an excellent day. Yesterday was good too. A friend came round for coffee and a chat in the morning and the afternoon saw us out for a drive along the local seafront with Ash still engaged, smiling and chatty. Then we come to today when I've felt as though I've been living in a pinball machine, ricocheting from one buffer to another and never quite knowing which direction Ash was going to send me in next. First there was the dog walking.  It seemed as though every 15 minutes Ash was coming to tell me, as though this was a complete

A '2 nap' day

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I've realised that Ash and I both have different ways of dealing with stressful days.  His is to eat and mine is to sleep.  I can tell how Ash's day is going by the number of cheese scones he consumes and I can tell how my day is going by the number of naps I have.  Today he's hardly eaten anything but I've had 2 naps which seems to me to say I've more or less managed to keep him calm but in doing so I've been left drained and exhausted.  This also seems to me to be a better outcome than the other way round so I'm ok with that. We got off to a difficult start when Ash came downstairs at 7am in a state of complete confusion.  Apparently he'd been awake for ages but couldn't get up because his bedroom was full of people and he didn't know what they wanted.  That was a first and consequently, as always with the 'firsts', I was completely thrown.  One deep breath later and I'd taken him back upstairs to show him that everyone had gone and

The camera is broken!!

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 Yesterday was exhausting and all because of the camera.  It really had broken but only in part which complicated things.  It would still take photos so, as far as I was concerned, it was working but the problem was my knowledge of how the camera functioned was a little lacking.  Matters were further complicated by the fact that Ash struggles to put words into sentences now and so, although he knew what was wrong, he couldn't tell me.  We both got more and more frustrated until, finally, I emailed Jake who came to the rescue and pronounced the camera well and truly finished. You may remember that Jake had  already emailed me a link so that I could buy a replacement and I did there and then.  Unfortunately that didn't really help the immediate situation because Ash wasn't capable of remembering that a new camera was on order and all he knew was that one of the things which gives his life meaning had gone. Not only that but there was the reason for the broken camera.  Ash cou