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Showing posts from April, 2020

Every case is different but .........

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They say everyone lives with a different version of dementia and I'm sure that's true.  We're individuals after all and have different life experiences to draw from which means those living with that diagnosis will each respond in a very different way.  What's struck me throughout this though is how similar many stories are and how many emotions those of us living alongside the condition share.  I'm currently reading a book titled 'Green Vanilla Tea' by Marie Williams who writes about her family's experience of the years before, during and after her husband's diagnosis of Young Onset Dementia at the age of 40.  I read it in short bursts and, after the first attempt at bedtime reading, only ever in the day time but what I'm struck by again and again is how often I find her describing my/our life.  It almost feels as though she's stolen my life and is using it as the basis for a book but of course she hasn't it's just that our experien…

Lawn mowing

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Among all the dreadful things happening in the world at the moment is one tiny unintended consequence which is driving me crazy.  We don't have a large lawn but we do have one which requires mowing and until last year that was Ash's job (along with numerous other life 'stuff' which had totally passed me by it seems).  Then last summer there were a number of times when the grass was getting long but Ash didn't seem to notice and there was a balancing act of dropping the subject into the conversation hoping he'd pick it up and run with it at the same time as nudging his memory and hoping he wouldn't get cross with me for mentioning it and finally suggesting I mow it myself.  Every so often he would agree to this last with an enthusiasm that would have been unheard of in the past because I was rarely trusted to get the lines straight which was apparently a very important feature of a newly mown lawn.  Now Ash loves his lawn mower, it's one he used for mowi…

A different sort of walk

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Just been for a walk together for the second time in two days and it was ok.  We 'chatted', admired the views and Ash took photos.  We were out for around an hour and a half which is quite a hike for him nowadays and if you'd seen us you would have thought everything was just hunky dory and close to normal.  I came home to write this and was about to tell you how wonderful it all was, what fun we'd had and how much I enjoyed it but then I realised that it might help some of you to know what it took to do that walk and how different it was to walks in the past.  Not so you feel sorry for me but so that you know, if your life with dementia isn't picture perfect, then you're not on your own.  In the past, as you know by now, Ash would have been in charge, I would have followed his lead and we really would have chatted all the way round.  We would have put the world to rights, discussed how the lockdown is affecting us, admired the views and worked out what we coul…

To care at home or to use a care home

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This isn't about dementia but the quandaries are the same so I thought it might help.  Yesterday was my Mum's 91st birthday and she spent it in her care home where she's lived for the past year and four days.  Moving there was never the intention and she'd spent the previous three years making me promise I would never 'put' her in one so it never occurred to me to investigate them, to look for one that would suit her or to make any sort of decision about long term care.  Then she had a fall, not only that but it was the twelfth fall in ten months and this time she didn't bounce back onto her feet but instead had to lie at the side of the road for an hour and a half waiting for the ambulance and for the second time in five months I got a call asking me to meet her at A & E which is an hour from me.  I got there to find a frail little old lady lying battered and bruised on a trolley not knowing what day it was or where she was and it was obvious she wasn&…

Pulling myself together

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Today didn't start well.  If I tell you that the point where it started to go wrong was with a question and a statement from Ash you might understand.  If I tell you that the question was 'have I got any socks down here?' and my answer was 'you should have plenty upstairs' and that the statement was 'I'm just taking Max for a walk' and my reply was 'that's OK, I'm just going out anyway' do you understand more?  If you do then you probably share your life with dementia and know exactly how I should have responded.  For those of you who don't I should have answered the question about socks with 'yes' and I should have answered the statement about going out with 'OK'.  Simple answers, uncluttered and understandable from any and every angle but for some reason I just didn't think and it nearly fell apart.  Luckily I managed to recover myself, and the situation, by finding socks and getting out of the house quickly.  I…

Reflections on a new life

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Emails and messages have come in about the article that's been included on the Young Dementia UK website and some of those messages have taken me by surprise.  I thought I'd written a positive and optimistic description of our life through this lockdown but many people said it brought a tear to their eye and I couldn't figure that out.  That was until this afternoon when I've managed to multitask with gardening and thinking going side by side and I suddenly thought I understood what had happened.  On the whole the people who were sad or upset were the ones who knew us 'before'; before dementia, before we began to change and before our life began to fall apart.  That's not to say that we haven't seen them since because we have but most people will still have the old Ash at the forefront of their minds when they think about us whereas I have grown used to the new Ash.  In fact more than that I think I've left the old Ash far back in the past and that …

New writing

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Very excited again as Young Dementia UK have published another of my pieces in their latest newsletter and on their website.  It's one of six written from a personal perspective of living through this lockdown while also living with, or alongside, dementia.  I love this writing lark and being included alongside other people living similar lives is just brilliant.  Not only that but it gives me an outlet for my angst, a channel for my stress and a vehicle for my optimism.  It also allows me to use words I wouldn't normally sprinkle into my conversation!  Have a look and see what you think. https://www.youngdementiauk.org/janes-lockdown-story?bblinkid=218440327&bbemailid=21087085&bbejrid=1467140016.  Oh and I apologise for the photo in advance.


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A tan (of sorts) is developing

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Those of you who've been following this blog for a while may remember the slight mishap I had with spray tan last summer.  We were going to the wedding of a dear family friend who we'd know almost since he was a baby and the weather leading up to the big day had been dreadful.  In fact it had rained so much that the groom's mum had bought silver wellies to match her outfit just in case so you can see why my tan wasn't as good as it could have been and I really, really wanted brown legs to go with my cream dress so spray tan it was.  Only I followed the instructions rather than taking the advice of a friend who knows about these things and I just sprayed the stuff on without rubbing it in.  Not only that but when my legs didn't go brown immediately I sprayed some more and then went to bed without a concern in my head.  If you've forgotten or weren't on board at that time I'm here to tell you that the next morning, the day before the wedding, my legs were…

Supporting each other

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The facebook page https://www.facebook.com/Memory-for-Two-287197572048864 is up and running and has followers which I'm very excited about so now we just have to make sure not only that people hear about it but that it's used in the right way.  I'd really like people to ask questions and to share positive tips if someone asks what they should do.  A long time ago I was reading through threads on a particularly dreadful forum when someone said she was bored with the endless repeats of programmes her husband insisted on watching and what could she do?  Unbelievably one of the replies was from a lady in a similar position who had just banned those particular programmes in her house and even more unbelievably no-one challenged that particular idea.  And there you have an example of the type of thing I really don't want to see on our forum.  Positive ideas and suggestions are the way forward here and, even more importantly, ideas and suggestions from those living with demen…

'New' Facebook page

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In 2018 I set up a facebook page to work alongside this blog but never really got to grips with how to use it or what I wanted it to be for so decided to delete it.  Thanks to my amazing technical and IT skills this of course failed to happen and I recently noticed that the page still existed which got me thinking about it all over again.  Then somehow, having vowed and declared that I would never use them again, I drifted into a couple of Facebook dementia forums and was amazed all over again at how, on the whole, they are 'Vessels of Despair'.  Maybe I've just chosen the wrong forums but from what I've seen people go on to vent about their loved ones which I hate and then are swamped by comments such as 'don't worry, it's the same for all of us.  You just have to suck it up.'  Whereas what I think they should be saying is 'stop and think what changes you could introduce which would make a difference', 'stop and think how frightened your lo…

Looking after ourselves

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There's a lot of talk at the moment about mental health issues and strategies for keeping safe while we're in lockdown but if you're living alongside dementia you'll have been told about mental well-being almost from the beginning even if, like us, you were given no formal support.  From the point when I discovered where to look and who to listen to everything I read or heard included the words 'and make sure you look after yourself too'.  The only person to actually give a practical solution to the 'how' was Penny Garner of Contented Dementia fame (contenteddementiatrust.org) and she said to find a new hobby, away from home and one that Ash knew nothing about.  In this way, she said, I would have something new to immerse myself in that was far removed from dementia and I could understand that, the only thing was, at the time I didn't have the energy for anything new, I was too busy stumbling through the new world of dementia.  Now of course I have …

Evidence of a personality change

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Since the beginning of all this I've felt myself changing beyond anything I thought was possible.  Not right at the beginning actually but certainly since I discovered that how I behaved made a difference to how well Ash could function which was approximately three months after his diagnosis.  For those initial three months I thought I would carry on being me while he sank without trace but  gradually I learned that if I was calm and collected around him (definitely not my personality at the time and, possibly, not even now if I'm honest) he was also calm, if I was full of smiles he was happier and so it went on until eventually it wasn't so much an act but more a way of life and the funny thing was that I felt better within myself which, I think, made me better company for those around me.   So what's made me think of this?  What evidence is there that I'm a completely different person now to the one I used to be?  On the larger scale there's the fact that thi…

Changes may be afoot

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Not quite sure if these are individual 'one-offs' or whether there is magic in the air but two things have happened this week that have stopped me in my tracks.  Ash has become a man of habit, not the reckless, fun-loving husband of old but someone prone to anxiety, to fretting about anything and everything, to having a need to feel safe at all times, only this week has been a little different.  First there was the day he sat in the sunshine barefoot which is something he hasn't done for at least two years.  Once upon a time it would be hard to find him wearing shoes unless he was at work;  the soles of his feet were like leather and he could walk over gravel, along farm tracks, just about anywhere, without needing footwear but since dementia arrived in his life the need for socks and shoes has been constant.  Not this week though or at least not on that one day.  Then today we got to lunch time and he discovered he'd forgotten make up his usual bowl of sandwich mix wh…

Social stimulation - a necessity?

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Ever since Ash's diagnosis I've been trying to get my head around support groups; for him, for me or for both of us.  I'm not very good in groups you see and he's never been a group person at all but we've been told again and again from a variety of sources that he needs social stimulation to keep his brain active.  This is in most books, almost all fact sheets, on forums and anywhere housing professionals who are supposed to know these things but it never sat right with me.  Ash has never needed groups, he's never needed company just for the sake of it and he's always been perfectly happy at home so I kept putting off the moment where I found a group that he could attend.  And then the lockdown arrived and I've discovered I was right and although he has dementia he still doesn't need groups.  What he does need is to be at home where he's comfortable and confident and he needs me here too but a me who's happy to be here and not spending her …

The peace and quiet is ongoing

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I know many people living alongside, and with, dementia are struggling with this lockdown.  There's nowhere to go, nothing to do and no-one to talk to and that can make life difficult but in this house, at this moment in time, I almost have my husband back.  He's not quite the same as the old one, that spark is still missing and the vitality is long gone but he's started talking to me again and that helps.  We don't have the conversations we had in the past but he comes to tell me things that he's heard on the tv, things he's seen in the garden and thoughts he's had about one thing or another and although sometimes he can't get the words out it doesn't seem to bother him.  He's also started making jokes again and not only that but understanding things I've seen on facebook that have made me smile and life is pretty good right now.  I still go on my walks but whereas in the past I would have to leave a note next to the kettle telling him wher…

Planning outside the box

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When Jake was little he and I used to go to London quite often. We'd stay with a friend and spend two or three days seeing the sights and he got quite at home there. We visited museums if they were free, we walked and looked at the outside of amazing buildings and we window shopped. The thing is that last item on the list could have been expensive but we were broke and I couldn't risk either of us being tempted so we went to Harrods, Fortnum & Masons and Liberty's where we knew before we even set foot inside that we wouldn't be able to afford anything and in this way we could browse to our hearts content just gazing in awe at everything around us. Even at the age of four Jake knew that we wouldn't be spending £2,500.00 on a child sized landrover so we oohed and aahed to our hearts content and just enjoyed the experience. So, onto life today. Before dementia made itself known my favourite hobby was planning holidays. I would notice items in magazines and …

Easter Sunday - just lovely

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I nearly didn't write this post, almost gave it a miss, because I was having such a wonderful, relaxing time making the most of the sunshine.  First thing this morning I went out on yet another exploration of the back lanes around the village and ended up out walking for nearly two hours during which time I met a total of five people.  Other than that it was just me, the sunshine and peace and quiet.  Am really hoping that I can keep this up and then I'll be slim, suntanned and fit by the end of the lockdown.  In fact maybe even a whole new me (who says you can't reinvent yourself?).  So that was first thing then it was back for coffee, radio and a book which took me up to lunch time, then a spot of gardening before heading inside to watch 'Jesus Christ, Superstar' which I've never seen before and which I thought would take me to tea time hence no time to write this blog post.  'Jesus Christ, Superstar' however was a production I couldn't get my hea…

Make the most of your life while you can.

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I've been in a slightly reflective mood over the past few weeks and in my thoughts have been trying to work out when exactly dementia entered our lives.  I still can't pin it down precisely but I realised this morning that the very last holiday we had where he was his completely normal self was also our last family holiday.  Ten years ago we went ski-ing in the French Alps and we went by train from St Pancras Station in London and we travelled business class.  It was a huge extravagance and one we couldn't really afford but I was fairly sure it would be our very last holiday together just the three of us and I made sure we pushed the boat out.  We boarded the train in London to be met with a glass of champagne and then it was sheer luxury until we reached the Alps seven hours later.  It was an amazing week where we ski-ied together most of the time, ate together, laughed together, enjoyed people watching together and just had a good time as a family.  The thing was that we…

Positive thoughts are the way forward for me

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I think that when we find ourselves in the middle of a dreadful situation we can go one way or the other; we can look at life in a state of despair or we can try to find the positives.  A few years ago Ash and I found ourselves in a very difficult situation through no fault of our own (except that I'd been too trusting of people I thought of as our friends) and I fell into that pit of despair.  Ash was brilliant and so supportive but I'm convinced now that what happened pushed him over the edge and into dementia.  Certainly we lost 5 years of our lives as we fought our way through it all and when we came out the other side we were changed forever.  When, in December 2017, we were given the diagnosis I did exactly the same thing again but luckily, after three months, I saw the light and decided that there was more to life.  Now there is a point to this post and I promise it's not a political one but this morning I saw one too many posts on facebook pointing out something dr…

Don't judge a day by it's beginning

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Woke this morning with a huge sick feeling in the pit of my stomach.  Not the little sick feeling that's there every day but huge and all because yesterday was difficult and it was up to me to make sure today was better.  If I'm completely honest all I wanted to do was curl up in a ball and stay there until this was all over (and I wasn't thinking about the current health situation) but that wasn't an option so I hauled myself out of bed and went downstairs to make tea.  While I was waiting for the kettle to boil I started to write this post (because after all I wouldn't want to forget how rubbish I was feeling) and began to pour my heart out.  Luckily for you before I got too far into it the water was hot enough to make tea so I did just that and went back to bed still with a heavy heart.  Half an hour later, feeling no better, I got up for the day and came downstairs to a message from my best friend who lives on the other side of the world suggesting a video chat…

Changing your perspective

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I've always disliked doing linear walks, those where you walk in one direction for a length of time and then turn round and walk all the way back again.  They've always seemed pointless and it was with great joy that a few months ago I discovered numerous circular walks to do with friends.  Those walks however almost all require driving to and so are off limits right now.  I've found a few close to home which, with a little ingenuity, have become circular but this morning decided on a walk which would be linear but give me spectacular views in the sunshine.  We'd had a very bad start to the morning involving a misunderstanding over fence paint and things got a little fraught so, with a need to escape somewhere with very little thought involved, this route was perfect.  I walked in the sunshine, listening (when there was a signal) to my favourite, positive DJ on the breakfast show and marvelled at the views over the fields.  I walked for 40 minutes before turning around…

A programme of events

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Now into the second week of lock down in the UK and how's it going for all of you?  I find that I can fritter my time away even more easily than usual and as long as each day I can get out on my own, can chat to friends and/or do a little bit of something extra I'm quite happy.  Having something to look forward to is the key I think so planning something 'new' however small is brilliant for taking my mind of everything and anything that's difficult.  It may be that the dementia which lives in this house is catching but I'm going to struggle to think back past last Friday so we'll have to go from there when I spent the evening watching 'Joseph and the Amazing Technicolor Dreamcoat' on Youtube  https://www.youtube.com/channel/UCdmPjhKMaXNNeCr1FjuMvag  It was the first of a series of Andrew Lloyd Webber musicals being released on a Friday night with each one available for the next two days and it was wonderful.  While Ash was engrossed in The Chase I h…

Speech and other difficulties

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For a few weeks Ash has been stuggling occasionally to find the words he needs to tell me something.  Not huge struggles but struggles nonetheless and it was so obvious this morning that I really took notice.  We were listening to the radio in bed when a song came on which, as usual, he recognised.  As usual I didn't recognise it and he knew without being told that I wouldn't so tried to tell me that it was 'Derek and the Dominoes'.  He had several attempts but neither word would come out and I was stuck between wondering how long to let him battle through in the hope that he would somehow be successful and whether I should step in with the words he needed and possibly destroy any feeling of satisfaction he might get in the end.   So did I step in or not?  Actually I did but not until Ash had given up and not before checking that he wasn't upset with not being able to say the words.

So that's one example of the difficulties he's having with speech, there ar…

Positivity and fitness back on board

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At the very beginning of this lockdown I decided to work out with Joe Wicks on Youtube every morning alongside all of those children his PE session was designed for.  I managed it for five days before realising I was constantly aching in places I didn't know existed.  The good thing about this was that it gave Ash something to laugh at every time I hauled myself off the sofa in the evening but the bad thing is that self esteem is as important to those of us living alongside dementia as it is to those living directly with it and my self esteem was taking a knocking at the acknowledgment that I can't keep up with those still at primary school so I gave up.  Now the interesting thing here is that in my previous life I very much adhered to the Quentin Crisp train of thought 'if at first you don't succeed maybe failure's your thing' and ordinarily I would have collapsed back onto that comfy sofa and given up completely.  However this dementia that's entered our …