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Showing posts from June, 2020

What should we call ourselves?

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There's always a lot of discussion about language when we're talking of illnesses or disability and only today someone mentioned on Twitter the use of PLWD (person living with dementia) and how demeaning it was.  This, along with PWD (person with dementia), is a pet hate of mine.  Why can't people just write it out in full?  How much longer does it take and are we really in so much of a hurry that we can't stop and think what we want to say?  Right at the beginning of this blog, when I first started writing, I asked for alternatives to 'person with dementia' because I didn't like the feel of the phrase; no-one came forward with any ideas but then 'Person living with dementia' came up and that sounded better.  I still like it as long as it's not shortened to PLWD but today's Twitter post got me thinking about what we call ourselves, those of us living alongside dementia?  I think at times we are also 'living with it' but that detracts…

Your happiness, your responsibility

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Years and years ago someone told me that she talked to her therapist of a friend who had an expectation of being happy in her life.  That friend was apparently me and, at the time, I denied it of course but secretly thought 'doesn't everyone have that expectation?'.  A few years later our lives began to unravel in spectacular fashion and I kind of gave up on the idea that happiness should be expected and I began to settle for second best, for happy most of the time or even happy some of the time.  Recently I've come to realise that happiness is out there for the taking but it has to come from within; in effect the only person we can, and should, rely on for our happiness is ourselves.  You can fill your life with the loveliest people (and I have), you can have most of what you want in life but the happiness itself cannot, and should not, rely on anyone else and certainly not on any one person.  This morning I thought about the little red sports car I've promised m…

What makes you smile?

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Have spent a lovely afternoon with friends drinking a socially distanced cup of tea in their garden and putting the world to rights.  We haven't seen each other since the beginning of lockdown so there were a number of topics to be covered but one thing we talked about was houses and whether to go with a sensible, forever house which will last into old age or an exciting one which fills the heart with joy and brings a smile whenever it's thought of.  Can you guess which one I preferred?  Having taken on board the sensible options in life over the past few years I've realised recently that life is short and there may be a chunk of it when fun isn't an option so it seems to me that the only way forward for all of us at this very moment is to grab all the joy we can find, hold it tightly and make the most of it.  Of course there are many aspects of this dementia affected life that aren't fun and can't be but it doesn't mean that there aren't moments of pur…

What keeps me here?

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Have spent a lot of today tidying and sorting my new seating area in the garden and you'll be pleased to know I love it just as much now as I did yesterday, in fact probably more because today I sat out there and had my lunch which meant I had time to admire it all in detail.  I seem to spend a great deal of time at the moment sitting in the garden pulling weeds from flower beds and gravel paths and it gives me head space to ponder the important and less important things going on in my life right now.  Today's pondering took me on the course of wondering what keeps me at Ash's side through all of this, what keeps me in a life which is so much less than I expected, so much narrower than I would like, when others might have cut and run.  People say it must be because I love him so much but how can that be when I don't even know him?  I live with a stranger who thinks only of himself and I come so far down his list of important items that I might as well be at the very bo…

Compromises, compromises (or not as the case may be)

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Long term relationships, even the best of them, are all about compromising.  Shall we change the kitchen or not?  What sort of flooring should we put down?  How much lawn do we really want out there?  Before any decision is made there has to be a discussion, options have to be investigated and then suddenly there you are with the final choice which, if you're very lucky, satisfies both of you.  This afternoon I discovered a real benefit to having dementia in our lives.  It's almost up there with the realisation that I can have the little red sports car I've been dreaming of for a while because I will be the one driving it and it's certainly more immediate because I've taken the loppers to a bush I've disliked for several summers and by doing that have created a whole new seating area in the shade just for me.  In the past Ash was in charge of the garden and he liked that bush but now he has no interest in what the garden looks like as long as I don't remove…

Living with a stranger

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Eight months ago I wrote something for Young Dementia Uk explaining what it was like living with someone who was disappearing before my very eyes and they were good enough to include it on their website.  Following all the comments about my posts over the past couple of weeks I thought that those of you who are new to the blog might like to read it.  If you're interested just click on this link and if you have any comments then let me know either on here or by email to memoryfortwo@gmail.com https://www.youngdementiauk.org/janes-story-0


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Changing personalities

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We spend a lot of time when living this dementia affected life talking about how our loved ones have changed, how they're no longer our soulmate or best friend and how we don't recognise this new person they've become but recently I've been considering the situation from a whole new angle.  When you've lived with someone for years and years you each take on a role within the relationship.  That role obviously develops but generally, if you're lucky, you carve out a personality for yourself which matches and compliments that of the other person and that's exactly what Ash and I did.  Most people thought I made the decisions and he did as he was told but that really was only because, mostly, he didn't mind and he always wanted me to be happy so he was more than ready to agree to whatever harebrained scheme I came up with as long as it fulfilled those two criteria.  Every so often I would suggest something he didn't like the sound of (the suggestion of…

Being patient

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When I was growing up it was just my mum and me.  My mum ran her own business and worked long hours and sometimes there was money for treats and sometimes there was just about enough money to live.  My mum had a vision for our future and if she'd had a good year with the business she went for the vision but if it had been a bad year then she (mostly) reigned in her dreams and we made do.  When I was 16, after a particularly good summer, we spent two weeks in Barbados; the next year was particularly difficult so we went to Sutton on Sea (small seaside village in Lincolnshire) for a long weekend.  No comparison, obviously, only what it taught me was to have big dreams as my long term goals but not to hanker after what I couldn't have or couldn't do.  That, I think, has been one of the most valuable lessons I learned from her and is definitely standing me in good stead through Ash's dementia.  I forgot the lesson at the very beginning I admit;  I wanted our old life back,…

But what about loyalty?

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For the past few weeks I've been suggesting that a way through this life, which is sooo not the one I had planned, is to dream of the future, to think of all the things I still want to do, to draw up lists and, in fact, to have an exit strategy.  For several years I worked for a children's charity and my job roles always revolved around funding with an end date and an exit strategy for when that funding finished and I've realised this is much the same.  I don't have an end date any more than anyone else in my situation but I do know there will be an end to it all and I know that, for my own sanity. I need to have a plan for then.  So I think all this and I say some of it and then I hear faint rumblings in the background as some people ask/think 'but what about loyalty?  What about loyalty to Ash and the life you had?'.  Some of this may come from people who have no idea what it feels like to live with someone they no longer recognise but often it comes from tho…

A momentous day

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Today is the day I drove the truck out of the drive for the last time, the event which said, more than anything else, that Ash's driving days were over and I was very sad.  Whether Ash was sad is a question that remains unanswered as I have absolutely no idea.  I'd arranged to deliver the truck after lunch and just assumed that I would do it on my own but he decided otherwise and I was at a loss as to what to say or how to deal with it when he said he wanted to reverse it out of it's parking space and put it onto the track for the last time so watched silently as he did just that.  Truck delivered we walked back home and it hasn't been mentioned since.  Ash's truck was the second love of his life after the dog (I come quite a long way down that list nowadays I think) but he doesn't seem to have shed a tear and he won't talk about it.  He's never been one for introspection or deep conversations so that part of it isn't unusual but what I'm findin…

Lists are the way forward

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Recently I've been putting my mind to this new attitude I've discovered within me and wondering how I got here.  As you'll know if you're living alongside dementia it's been a long hard slog which began a long time before that diagnosis and at times it's been a roller coaster of emotions but I think the breakthrough came when I realised I couldn't live under a cloud for ever more.  This is my life as well as Ash's and it seems to me that the best way forward for both of us is if, more than occasionally, I focus on me and what I want to do with the rest of my days.  Those not closely involved can sometimes ask the question 'why don't you leave?' but that isn't an option here and even in the really bad times I've never  considered it.  We've been together of over forty years and he's been by my side  taking care of me for most of that time, in fact right up until he really, really couldn't so now it's my turn but that …

DIY skills are a thing of the past

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Yesterday was skip filling day at my mum's as we cleared out the garage to show that it really is possible to fit two cars inside, one next to the other.  Great job satisfaction was the order of the day when, at the end of the morning, we'd filled the enormous skip and it was a case of 'mission accomplished' but what was a little sad was that Ash, once the great organiser of skip filling, needed instruction every step of the way; what to put in, where to place it, whether it needed dismantling first and on and on.  In that same vein today we needed to take the washing machine out of the house and replace it with a newer model.  That machine was where it was because, years ago, Ash created a whole new utility room and shower room in an extension we'd had built.  He  plumbed, he wired, he decorated and he built.  Today he removed the electric plug in order to be able to move the washer but then couldn't figure out how to put it all back together.  The man who has…

Another unexpected light appears

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When you have dementia in your life sometimes things can get a little dark.  I'm discovering however, as you may have realised, that the lights are there if I look hard enough and today I found another one.  Over the years I've had a few fun cars including a white Ford Escort Cabriolet with a bright pink 'splat' on the side and an azure blue Land Rover Freelander with a choice of hard or canvas back but then, due to reasons beyond our control, life became a little grey and so did the vehicles so that now I'm the proud owner of a grey Seat which isn't boring to drive but is very boring to look at and certainly hard to pick out in a car park.  I've recently been thinking of changing this particular vehicle but had decided that I would need to get one identical partly because Ash loves it so much and also because I thought he might struggle to drive anything else.  A walk this morning with friends cleared my head to such an extent that I realised, with Ash'…

A small curve ball is a learning experience

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A while ago I posted about the fact that, at the start of every day, I would say 'Good morning' to Ash and he would respond with 'what?' which drove me to distraction.  This morning I realised I've really moved on with this and now have no need to say good morning to him at all.  It adds nothing to his day or mine, is no indication of what sort of mood he's in or what kind of day we're heading for and gradually that comment has become a thing of the past.  Once upon a time I would have been saddened by that but I've now become a grown up and settled for what makes life easy for both of us.  Talking to Ash and expecting a response as soon as he wakes up makes life just a tiny bit unsettling for him and not getting the response I want makes life very unsettling for me so why carry on?  Instead, along with the reinvention of myself that I've been talking about (which is currently ongoing), I now have a little world going on inside my head.  This isn…

Yet another positive effect of lockdown

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So lockdown has been good for some of us and not so good for others and much of that, I suspect, is down to where you are in this dementia experience.  Those much further down the line than us may have found it difficult to be without the support they rely on, the lack of groups and activities might have made life less interesting and being unable to get out of the house for some peace and quiet could, I can see, have meant less time to regroup and recover.  For us this has been nothing but positive.  Ash is happy to be at home without the pressure of wondering what he's supposed to do next and as for me, I've discovered a whole new person under the layers of the stresses and strains of the past few years.   I've reported on the weight loss (not great yet but getting there), I've told you about my new exercise regime and, this morning, I decided to go one step further and have a whole new hairstyle once I can get to a hairdressers.  This last won't be too difficult…

Breaking through the pain barrier

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No, I'm not talking about the running although I did realise this morning that you didn't get your update last week so I'd like to tell you it's still going well.  I start off every Monday, Wednesday and Friday with a spring in my step (even last Friday when it was raining) and I still feel good half an hour later as I'm coming through the door.  My music is always on shuffle so I never know what's going to be playing in my ear but a couple of mornings I've set off to the strains of 'I Want to Boogie' by TRex and this morning it was 'Devil Gate Drive' by Suzi Quatro so what could be better?  Actually I have several friends who've questioned my taste in music recently but that's OK because they don't have to listen to it and they're not running with me.

So now onto that pain barrier.  I've talked several times about the pain of all this from the years leading up to the diagnosis, through the aftermath of that awful day and…

Driving update

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If you've only recently joined us you might not know that just over three weeks ago Ash agreed to give up driving but if you've been following the blog for a while you'll have read all about that traumatic day and you'll also know about the truck which is/was his pride and joy.  He loved the truck and I really wasn't sure how to handle that part of the situation so decided to sit back for a while to see which would be less traumatic, looking at it sitting outside the house unused or watching it go out of the top of the drive for ever.  There are many difficult decisions to be made when living alongside dementia but I think, after the diagnosis, this was the most difficult one of all and it was one I'd been dreading.  So I let the truck sit outside the window while I watched, waited and pondered what to do.  Ash's truck is well known in this area and one or two people got in touch to say they were interested in it so selling it didn't seem to be a proble…

How much difference do I make?

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You may have noticed my current upbeat attitude to life and, if you've been following the blog for a while, you'll know this has been a hard fought battle for me.  There have been so many ups and downs, so many highs and lows, that I think we've all occasionally got dizzy but this time I've really seen the benefits so I'm hoping I can keep it up.  The thing is that it's not just me that benefits from my new outlook on life.  I had a video chat with Nicky from the memory clinic this afternoon where she asked me how Ash was doing, what his moods were like, whether he was coping with his anxiety issues and all I could say was 'he's fine' to almost every question.  I didn't mean he's always fine, that there's never a problem, but those moments when I think we're both going to go crazy seem few and far between just now and it's not all down to lockdown.  Slowing life to a manageable pace has certainly been a benefit but I really think…

Taking back control

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I'm going to start this post once again with the words 'when dementia enters your life everything changes'.  You may be tired of hearing what's becoming a well worn phrase in this blog but it's so true and nothing can prepare you for what's to come.  Apart from the brief period when Jake was little I have always worked; at one time I had three jobs and, if I woke in a morning and couldn't remember what day it was, I panicked because if I didn't know what day it was how would I know where I was supposed to be.  Those jobs weren't fancy, in fact they had nothing in common with each other whatsoever which sometimes added to my confusion.  In one I mucked out the stables of shire horses, on another day I went to serve tea and cakes at a local farm park and on the remaining days I helped to keep some sort of order at our village playgroup so there was definitely variety in my life but no thought of a career.  Then one of those took my fancy and for the n…

What gets you through all this?

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When you share your life with dementia it's very difficult to see what's ahead.  In fact everyone tells you that the best way of dealing with it all is to just accept what's happening and live in the moment and I've tried that but with limited success.  Telling myself life is ok right now works in the short term but to be perfectly blunt my life is unlikely to end when Ash's does so how do I prepare for that eventuality without wishing away every last minute with him.  Everyone needs something good to look forward to, a goal to aim for and living in the moment doesn't help you do that it just helps you to pass the time.  None of this is his fault or mine so I do my very best to make sure we're enjoying ourselves within the limitations of our life just now but selfishly I feel there must be more than this so here's what I've come up with.  I've decided that my life is on 'pause'.  I used to think it was on hold only that seems so definite…