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Showing posts from January, 2021

Dare to dream

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I'm still thinking about 'afterwards', where I'll go, what I'll do and who I'll be and a recent comment on here made me think about how angry and upset I was when I realised that all the things we'd planned were never going to happen.  However the further along this road I've travelled the more I've changed and I know now that there are things waiting for me which I'd never have dared to do before.  I am more capable, more confident and more adventurous than I've ever been in my life and I think now that if everything had come to an end on that diagnosis day, if I'd had the chance to go and do whatever I wanted there and then, I would have missed so much.  Everything happens for a reason so I have a feeling that with my new self as a travelling companion I might revisit my adventure list, revise it, re-order it and maybe add some destinations I would never have considered before.  There are some caveats to any prospective destinations of

Loyalty

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 Someone has just posted a very interesting comment on yesterday's post talking about how we change and why, what makes us who we are, whether circumstances make the difference or whether we don't change but instead hidden skills come to the fore when we need them.  So lots and lots of things to think about but there was a light bulb moment in there for me and I really can't believe I didn't realise it before.  I've been at Ash's side through all of this and at no point since that diagnosis have I thought of leaving.  Even in the days when I felt as though I was hanging on by my fingertips and that if I let go even for a moment I'd go into free fall, even when I felt as though I was in the middle of a pinball machine ricocheting every which way off the posts, even when I felt my life had narrowed to the point where I thought I'd lose my mind, I didn't consider for one moment that I might abandon him but when I tried to reason it out I couldn't ud

Who will I be?

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 Do you know one of the best things about writing this blog?  Sometimes I think of something which I assume will be controversial and I'm never sure whether to put it into words or not but I really want to know what others think so I put it out there and those are the posts which get the most response, with almost everyone thinking along the same lines.  There are comments on the blog and emails direct to my inbox all saying something similar or giving another perspective and I find it all so fascinating but not only that I find it comforting.  We're told again and again that every case of dementia is different but so many of the emotions experienced by those of us living alongside that dementia are similar and it's lovely to know I'm not on my own. So that is a very long-winded way of telling you that it appears I'm not the only one out there thinking about afterwards which has been very uplifting.   I do think that sometimes it feels as though this isn't somet

Thoughts for tomorrow

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Not much to report from today other than I wandered the streets of Sorrento this morning courtesy of Youtube and my treadmill and have now added it to my 'afterwards' list and that set me thinking about the whole 'afterwards' thing.  My thoughts on the subject are still jumbled but am resolved to have dissected them enough by tomorrow to be able to share them so thought I might ask you to have a think too.  I have list after list of things I'm putting off for the moment but 'afterwards' is going to involve far more than activities and experiences.  Not so much 'what am I going to do?' but more 'who am I going to be?'  Have you thought about it at all or are you better than me at living in the moment? Let's talk about it tomorrow and remember it's not an act of disloyalty to think about this it's more an act of survival, at least for me it is. Don't forget you can sign up to have this delivered straight into your inbox, just re

wood collecting

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 My day began with a walk on the island of Capri which is now a destination on my adventure list for 'afterwards'.  Lovely walk on the treadmill with the views in front of me so much nicer than the ones I glimpsed outside the window and I was actually filled with joy which is never a bad start to the day.  Boring things followed but then I decided to get out in the fresh air before the rain came so layered up against the cold until I looked like my version of a Michelin man, put my rucksack on my back and went out for a short walk with the idea of collecting wood for the fire if I saw any.  Wasn't out for long before I came on several pieces which went into the rucksack and two large bits which I decided I could carry so all was looking good.  Got to a stile and clambered over leaving the two large pieces behind with the plan that I could collect them on the way back, waded through mud and over another stile and then I was in a huge meadow with huge trees and broken branche

Getting a grip

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If you only know me through this blog you might not realise how difficult I find it to stick at anything.  I so often give up or lose my motivation and then before I know it I'm back to square one.  This dementia affected life however is something I can't give up on so I've had to come up with strategies to cover as many eventualities as I can think of.  There are of course the strategies to help Ash cope with life and which in turn make my life just that little bit easier but there are also the strategies which keep me on the straight and narrow and those are the ones which make me focus.  This morning I realised that I've stopped exercising.  I used to go out at 7am every morning and walk for an hour but a couple of weeks ago, 3 mornings in a row, I got as far as the road and almost fell over on the ice so I decided to give up on that until the 7ams were lighter and the frost was gone.  Instead I was going to go on my treadmill every afternoon except that I didn't

In better shape

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 I have to admit that I was still feeling a little sorry for myself this morning, still wishing Ash was the person he used to be, still wishing he'd look at me with the old glow in his eyes but wishing is no use and I'm mostly rooted in reality so I gave myself a mental shake and once again picked up the reigns to get on with things.  Having decided that I sat at the computer and had a look at a photo I'd taken of myself yesterday which I quite liked.  For a long time I hated photos of me because I didn't like what I saw but had no idea how to change and very little motivation to make any of those that were necessary so the easiest thing was to hide from the camera and shut the other thoughts out too.  Then I started to lose weight and get fit and suddenly I felt better about myself so a few photos began to appear and I didn't mind them.  This morning then I looked for yesterday's photo and there, alongside it, was one taken just before Christmas 2019, almost ex

A look knocks me sideways

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 Ash is having a bad day today and it's making life a little uncomfortable.  The first part of my morning was lovely with a video chat amongst friends followed by a session outside in the sunshine with my dearly beloved chainsaw which is fast becoming my favourite possession.  I filled the basket with logs and then looked up to find Ash had come out to see if I wanted the full (heavy) basket carrying back to the house.  The answer to that was of course a very grateful 'yes please' and a smile but I did notice the smile wasn't returned.  Not a problem because it isn't always and I was still filled with post-chainsaw joy.  It was when I came back inside then that the reality hit me.  I went into the kitchen and made some happy comment only to see Ash look at me with something approaching dislike in his eyes which caught me off guard and briefly knocked me sideways.  Now I do know this isn't the real him and the intelligent part of me understands that it probably w

A disturbed night

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 Yesterday, you may have noticed, there was no blog post and that was because I spent the whole day feeling as though I'd been hit over the head with a cricket bat because Ash woke me up at 4am thinking it was time to get up and that we'd overslept.  Even now I don't feel quite recovered so if this post doesn't make a whole lof of sense you'll have to forgive me.  At the time I calmed him down, made a cup of tea and then waited for him to fall back to sleep which he did quite quickly once I'd persuaded him that the only thing to do was stay where we were for a while.  Unfortunately snoring came very quickly on the heels of his sleep but by that time I was warm and cosy in the big bed on the comfortable mattress and was very loathe to move so it took a while of battling with my brain before I realised that, if I was to get any sleep at all, I was going to have to rouse myself and make my way to 'my' bedroom.  I finally got back to sleep around 5.30am only

A basket full of logs

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So the next instalment of the chainsaw saga is here and I'm pleased to be able to tell you that I had a go and it worked!  I did think it might be another day of barriers just because of the rain hammering against the window first thing and into the rest of the morning but eventually it stopped and I was out there.  Once again I layered all the safety clothing on until I looked like an overweight tangerine, picked up the chainsaw, stopped Ash taking a photo of me and then made my way outside to pull large branches from the pile.  I found several that looked a good size to start on, jammed them into the saw horse and set to discovering in the process that it really was as much fun as I hoped it would be.  I'm sure most of you know more interesting ways to enjoy yourselves but when dementia's in your life your options are limited and, I have to say, I had more fun with that chainsaw than I've had with almost anything in a very, very long time with the added bonus that, at

Logging fails to commence

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 I really, really thought I was going to be using this post to tell you how successful the chainsaw had been and that we now had piles and piles of logs to burn but it wasn't to be.  As you  know I'd collected the chain saw on Friday along with the safety helmet, visor and ear defenders, the trousers had arrived on Saturday and I was all set for my first attempt yesterday but a video call with my best friend in Australia took up the morning, a birthday walk with another friend in the village took up the afternoon and then it was dusk and even I wasn't going to attempt using a chainsaw when I couldn't see properly so the scene was reset to this afternoon.  I put on the trousers, donned the helmet and picked up the chainsaw, making my way out to the shed to collect the battery which I'd last used on the lawn mower at the end of the summer and for some reason forgetting to check beforehand whether it had held its charge or not.  I'm sure you know exactly what I'

Let the logging commence

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Collected the chainsaw this afternoon so this has been a very good day; slightly odd but good on several counts.  Odd because Ash said he was having a bad day and would rather stay at home than go with me to collect it when usually he'll do anything to get out of the village but good because he recognised the confusion that comes on a bad day, talked about it and accepted it; Odd because I caved in and bought safety equipment/clothing to go with the new chainsaw but good because I listened to all of the friends who'd tried to tell me what I needed when I obviously didn't want to take any notice; Odd because I didn't immediately try out the new toy when I got home but good because I realised I needed to wait for the special trousers to arrive before I put it to the test; Odd because when I got home and tried to show Ash what I'd just bought he wasn't in the least bit interested but good because it didn't bother me, I was just pleased on my own behalf.  So all

Pork pie update

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Things have been fairly quiet on the pork pie front recently with only one discovery in the cupboard a few weeks ago.  That was until this week when it seemed Ash's consumption of them had gone up three fold. He used to eat two a week but suddenly six had disappeared in six days and I was completely baffled when he reported that we were a pork pie free zone.  I sent him out to the freezer for another look and then took myself into the dining room, opened the cupboard and there, sitting quietly among the DVDs, board games and all the other detritus, was not one but TWO pork pies.  I gathered them up, handed them over and then today went into the butchers and ordered seven which I'm hoping will see us through the week.  Watch this space to see how we fare. Don't forget you can sign up to have this delivered straight into your inbox, just remember to click on the validation email (which may be in your junk mail/trash box).  You can share specific posts with others by clicking

Thriving or surviving?

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If we're leading difficult lives is it enough just to survive or should we be aiming to thrive in the face of adversity?  I'm sure I'm not alone in moving into survival mode to get through difficult patches and I certainly did that in the run up to Ash's diagnosis and beyond.  I focused on putting one foot in front of the other and worked to get from one day to the next.  I had strategies: I shut down emotionally; I retreated into a world inside my head; I did the practical stuff such as cooking, cleaning, washing (but not ironing - things were never that bad), making sure we had fuel for heating, making sure we had food in the house, all things that I could control but never for a minute did I think about life being fun or even enjoyable.  Those strategies have continued because I still need to survive but at some point over the past 12 months I've realised that just surviving is no way to live, that there has to be more to life than that but what makes the differe

What would happen if ........?

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Someone today suggested diet as a way of slowing down the development of Ash's dementia and it got me thinking.  When he was first diagnosed my brain went into overdrive and I researched supplements, diet, exercise, brain training, everything I could lay my hands and eyes on.  I bought bottles and bottles of Turmeric, potassium, magnesium and a whole host of other things so that Ash was on 11 tablets every morning and more at night all in the hope that they would help.  But help how?  Did I think they would reverse what was happening to him, did I expect that a magic wand would be waved and it would all disappear or did I think it would just stop the 'rot' of his brain at that particular point?  I have no idea I just couldn't bear the thought that I would lose him.  Now however I realise, as I've said many times before, I'd already lost him and way before that diagnosis so what would happen now if I could delay the inevitable?  Currently I share my house with a

Dementia is tricky

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Living alongside dementia is so tricky isn't it.  One thought after another strikes us and turns our lives into a roller coaster of emotion so that just when we think we've got the hang of things we're knocked sideways by something so small you'd think it would be insignificant.  Yesterday my new electric screwdriver arrived in the post (and yes there is a thought process going on here) so I woke this morning very, very excited at the thought of using it.  In an aside here you might like to know that I've decided to amass my own tool collection on the basis that 1. all of Ash's tools are too heavy for me and 2. he was so good at using them that I just have to look at them and I feel overwhelmed.  I've begun therefore to buy what I need one at a time and then I can learn how to use them in my own time and, more importantly, when he's out and not looking on making me nervous.  So the screwdriver had arrived and I had a plan on where to begin with it which

The log pile is growing

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So now I have my own woodyard, have learnt to use a small electric saw, have taken the axe to small pieces of wood turning them into sticks, am strengthening my thigh muscles by pumping the hydraulic log splitter and I'm loving every single minute of it.  I'm not sure what I love best, whether it's being outside in the fresh air or having a proper excuse to avoid the housework or feeling fitter and healthier or carrying with me a feeling of accomplishment as I look at the ever growing piles of logs and sticks.  Every night when I light the fire I'm already warm with the glow that's come from growing ever more self sufficient and sometimes, when I'm in reflective mode, I wonder at how far I've come in the past three years.  It was all going so well then until lunch time today.  I got back from a walk to find Ash out with the dog so I decided to split some more logs (I'm a little worried that I'm becoming addicted to this particular activity).  I found

Lots to smile about

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Years ago Ash fenced off a small area at the end of the garden where he stored wood ready for splitting, wood which had already been split and wood which needed putting to one side for a few years until it was burnable.  It was where he disappeared to with his chainsaw and, although it wasn't out of bounds to me, there was no reason for me ever to venture into it because he had everything under control.  It was in fact an outdoor 'man cave' and he was very, very happy in it.  Then dementia came creeping around the corner and his interest in all things wood related dwindled until I found myself learning how to use a small electric saw, relearning how to use an axe and having to persuade Ash to saw up the bigger stuff and split the medium sized pieces.  Yesterday we went out and used the chainsaw (when I say 'we' I mean Ash used it and I supervised) but he did it with the greatest reluctance and when it came to splitting what he'd created he decided to leave it fo

A busy afternoon

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 The old Ash rarely snored and especially not once he gave up alcohol but recently, every so often, he has and nothing I could do, no digs in the ribs, no thumping on his back, would wake him up and make him stop so I took to moving into the 7 year old's bedroom when it all became too much.  Only every so often you understand and only when I couldn't get back to sleep but move I did and I wasn't particularly happy about it.  Our bed is huge; super kingsize in fact and I love it partly because Ash made it.  It sits on the floor and the mattress is firm and comfortable, just the way I like it.  Not only that but the bedroom is just as I like it too and moving out in the middle of the night to sleep surrounded by toys and under a Lego quilt cover wasn't quite the same.  It wasn't a grown up room and the 7 year old's mattress moved too much for me to feel really comfortable.  I couldn't see a way out of the situation though because that room was created especial

The fun continues

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 As we know living alongside dementia isn't always the most fun but if we try hard enough there is fun to be had.  You may remember that before Christmas I decided that one of my missions in life from then on was, wherever possible, to buy things which brought a smile to my face and I've decided that this has been one of the best decisions of my life.  Even the boring can (almost) always be lifted out of the mundane and half the fun is looking for a better alternative.  This afternoon it was the turn of the humble Thermos flask.  A friend and I went for a walk and I took the coffee along in Ash's old flask which turned out to be much older and more fragile than I thought.  We had the coffee but it was obvious that in future I would need a new one, one which didn't leak, and I was determined to find something a little different but without spending the earth.  I found one, ordered it and will post photos for you to admire once it arrives but while I was doing the finding