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Showing posts from January, 2019

(almost) ready for a little R & R

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Am now packing ready for off tomorrow and no idea when I'll post again.  Planning to really go with the flow over the next two and a half weeks and am aiming for total relaxation by day three.  Either that or it will be a complete disaster and we'll be queuing up at the airport trying to get an early flight home.  I really do have faith in all of this though.   The airport hotel is booked; the shuttle to the airport on Saturday is booked; the dog is with friends; assistance, I've been assured, will be on hand from airport check-in right the way through to the taxi at the other end and again on our return; the taxi to the resort is booked; it looks as though there will be enough to keep us occupied without leaving the resort if we don't want to; I know how to get our favourite radio stations/programmes while we're away; a hotel is booked for the final day (for the time between leaving the resort and getting on the plane in the evening for the flight home); a hotel i…

Acceptance is the key

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Whenever I'm driving around the county for work or when I find myself lying awake in the middle of the night I think about what's happening to us and what's changed because of it all.  A few days ago I was doing just that (driving around the county rather than dealing with a bout of insomnia) and decided that the further we get from how things used to be when were living a 'normal life' the harder it is to remember what that life was like.  Then I realised it's not because we're further away from normality but that we have a new normality which has come with acceptance of our situation.   Ash was in the police force all his working life and several years ago, when Jake was quite little, he was accepted for a particular job role which involved the possibility of him being away from home during the week.  The thing was that he had no idea when or even if he would need to be away and probably wouldn't until the very last minute.  We talked about this befor…

A difficult day was had by all

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Today was difficult.  Not quite from the moment we woke up but from very shortly afterwards and it has all been very trying.  We've had one of those days where everything I said was wrong.  Unfortunately it was also one of the few days when Ash didn't forget a single conversation and so kept returning to the subject again and again just to show me the error of my ways.  This I have to tell you is exhausting.  I realise it's not Ash speaking and I know it will all blow over but just sometimes I'd love him to recognise what a huge effort I'm making in trying to ensure that his life goes as smoothly as possible.  This of course is impossible and it's never going to happen.  When these moods grab him he has no idea what he's saying and would be mortified if he did so all in all I think I'm grateful that he doesn't understand.

There are so many reasons I think this is happening and why it's happening today but knowing those reasons doesn't help q…

Legal stuff

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A few days ago I wrote about becoming a grown up; putting wills in place, applying for a Power of Attorney for each of us and generally putting all the legal stuff in place so that I can relax in the knowledge that, as the dementia tightens its grip, I will have some control over what happens next.  A friend then got in touch to say that she had someone going to visit to help her do just what I'd written about, specifically the Power of Attorney forms.  I am so pleased that she has that help but am so cross that in my county  if there is help out there it's up to me to go and find it.  All over again I've realised that since 20th December 2017 we have been completely on our own.  Not one organisation has contacted us to see if we need assistance or to suggest they come and help us discover what's out there.   Luckily for us my mum and stepfather put LPAs in place a few years ago and I'm named in both so I had an idea they would be needed but no-one actually suggest…

Life lessons from a 5 year old

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Jake came over today to go for a walk with his dad and brought the 5 year old with him.  Before I knew that the little one was coming I'd planned to sort through Ash's clothes and get rid of what he no longer wore (anything that's not black) but was more than happy to spend a couple of hours playing and had thought of a few things to keep him occupied.  Well what do I know?  He burst through the door, beside himself with excitement, and announced we were going ice hunting.  While the 'big boys' went off with the dog, the five year old and I donned boots, scarves, coats, hats and gloves and out we went complete with spade for levering up ice sheets.  That time spent out on the field tracks with him were the best few hours I've spent in a long time.  What did he teach me?  To live in the moment, to look no further than the next puddle, to soak up the sunshine and take note of the effect it was having on the ice and frost.  No point in planning because there's…

Behaviour management by any other name

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I've spent the day delivering a course on managing challenging behaviour in out of school clubs and was struck by the similarities to managing the situation I have at home.  This is in no way meant to trivialise what's happening to us or to say that I think of Ash as a child but instead has emphasised to me that we all need to be treated as individuals in order for us to shine.  There is no 'one size fits all' and we need to work out what each child/adult is in need of before we do anything else.  So what did we discuss?  We talked about observing children to see why they behave the way they do.  Is the child sitting quietly in the corner frightened of being more involved or just a quiet child?  Is the child who lashes out frightened or frustrated?  If so what causes the fear and frustration and can we reduce that cause?  Does the sight of a child raising his/her voice to another mean that we should step in immediately or should we wait and see if the situation resolve…

The difficulties of being a grown-up

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Neither of us has been particularly good at acting as a grown-up in the past but I think I started to forge ahead around 5 years ago when we found ourselves in a situation which needed some form of control on our part.  Ash however still didn't see the necessity or maybe he did but buried his head in the sand hoping it would all go away.  Anyway recent events have brought everything to a head and suddenly there really is a need for a will and for Powers of Attorney to be put in place but how to do this without panicking him.  I have read of others where their loved one is in denial about the situation and refuses to sign or has no idea how their mental state has deteriorated and doesn't feel it's necessary quite yet.  The problem there is that suddenly it's too late and nothing is in place.  In our case I suggested it was about time we both made a will, Ash agreed and we went along to put it all down in writing.  No problem there but then the solicitor wrote wanting to…

It's always the little things

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I think I may have said this before but in my experience strategies are the most important things when dealing with dementia.  Having a game plan and following it through with relentless determination has made all the difference to our lives and we are now at the point where it all seems so manageable that it's sometimes difficult to remember when things were different.  We bimble along then in a  (mostly) amicable way and just get on with life in general.  However it's always the little things that catch me out and make me realise all over again how much things have changed.  Last night I wanted to watch 'Love it or List it' on the television and, as Ash didn't mind, on it went.  For years and years he has started every programme headed up by or including Kirsty Allsop with the question 'what is she wearing this time?' and it's become a standing joke.  Last night that question didn't come so I said instead 'what is she wearing this time?'. …

The effects of tiredness

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Yesterday I wrote a really positive post about how well our weekend away had gone.  Approximately one hour after I wrote that post Ash went into meltdown.  I have no definite idea of what caused it but it seemed to be something to do with some trousers he'd given me to wash and my response.  As I had said 'ok, put them with the rest' a meltdown seemed unreasonable in the extreme but dementia I've learnt is in no way connected to logic or rationality.  Instead it seems to depend entirely on mood swings, atmosphere and the reaction of others.  This is the third such crisis in two months and, having considered them all, I've come to the conclusion that each one has been triggered by tiredness.  The first was after lots of socialising, the second was at the end of Christmas Day and this latest followed a lovely four day break in Suffolk.  If you've ever had children you may remember the fall out after they've been to stay with grandparents.  There is almost alw…

Excellent down time

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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?

If we're going away for a 'weekend' make it Friday to Monday.  Ash didn't quite understand why we didn't come …

Weekend away

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Just to let you know that this will quite possibly be the last post until next Tuesday.  We're away for a long weekend with friends and if it works out I want to savour it.  If it doesn't we'll be heading home early so I can lick my wounds and I won't want to talk about it.  This is yet another experiment as it's the first time we've been away with anyone else for over a year so I'm not quite sure how it will go.  Having said that these are the friends I would choose every time for this type of experiment as we've been going away with them several times a year for over twenty years.  Usually when we join them on a short break we pitch up to the cottage/tent/shepherds hut etc, discuss meals then shop for them and look at maps to decide where we're going to walk but Ash can't now cope with discussion.  To help this trip along therefore and make sure it's stress free for him we've planned meals beforehand then each brought food for them, we…

A changing life

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Sometimes when I'm tired this all becomes a little like hard work and I begin to reminisce about times gone by and how things were so different.  Today was one of those days and, through rose tinted spectacles, I remembered all the good times when Ash was mentally strong, capable, someone for me to lean on, someone who took life in his stride and didn't worry about a thing.  Then I took myself by the shoulders and gave myself a shake.  He has changed considerably over the past few years certainly since 2012 and, most noticeably, since 2015 but these changes aren't all for the worse I've decided.  Forgotten to lock the doors when we've left the house?  'Never mind it'll be ok' used to be the response.  Now he checks every door is locked before we leave and I'm not left wondering if we'll return to a burgled home.  Not got around to ordering more coal?  'Never mind we can always drive down to the coal yard and collect a bag to keep us going…

Juggling (and managing to keep all the plates spinning).

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This week is turning out to be a little hectic.  Monday I had to take Mum to her posh lunch club then took a deep breath and left Ash on his own overnight as the fire service had made an appointment to visit Mum on Tuesday morning to check whether her house is safe and ensure she can continue to live on her own (and not many 'nearly 90 year olds' doing that I suspect).  If I hadn't stayed I would have arrived home at 6.30pm on Monday and then left again at 8am on Tuesday for the return journey so I thought I'd see how Ash managed.  He managed well and mum's house passed with flying colours so that was all good.  I usually work Tuesdays and Thursdays but have some extra hours at the moment so those two things with mum meant that I've worked Monday afternoon and Tuesday afternoon to fit in what needs to be done with her.  Then work again today.  Tomorrow's work hours will be done in between an appointment with Ash at the surgery in the morning and grocery sho…

Why making life easier should be the way forward

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Although every person with dementia is different there do appear to be some common threads throughout.  A need for a calm environment, a need for the familiar, a need for reassurance, a need to feel good about themselves, a need to feel safe, all of these things make a huge impact not only on the lives of those directly affected by dementia but also on the lives of those around them.  If your loved one feels safe they are less anxious, if they are on familiar territory they can relax, if they know they are loved they will feel good about themselves and so on.  Why then do some people feel that the best way forward is to put their foot down and deny their person with dementia those things they need just because it doesn't suit them.  I read a while ago about the irritation of having to watch the same programmes on television again and again and realised that Ash does the same.  His favourite programme as I'm sure you all know by now is The Chase although he will watch other qui…

A guide to keeping your friends

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A few days ago I wrote about what people need to do in order to be a 'good friend' and I said at the time that I sometimes feel friends drop by the wayside not because they don't want to help but because they don't know how.  They don't mention your difficulties because they don't know what to say or what words to use.  If this is the case then I feel it's our job to make their life easier and so, to add to the guide I wrote then, here is another which hopefully will make everyone's life easier still.

Again the focus here is dementia and the suggestions that follow are what's worked for us and our friends.  Your friends may be different but I don't really think so.  If, after all this, your friends don't respond then I would suggest it might be time to widen your social circle and find new people to have fun with and who will support you.
Give general information.  It's very easy to think that everyone knows about dementia just because yo…

Supporting those who've supported us

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Those of you who've been following this blog for a while will have realised by now that without the Contented Dementia Trust Jake and I would still be floundering in a pit of despair with no idea of what to do or how to cope which in turn would have had such a detrimental effect on Ash's well-being that I truly believe he would not be the functioning human being he is today.  The trust is a very small charity based in the gorgeous village of Burford in the Cotswolds where Jake and I spent a fascinating 2 days last March learning strategies to make life easier.  Penny and her team were amazingly supportive and that support has carried on through the months following the course.  In May last year they travelled all the way to our small village in Lincolnshire to talk to friends about how they could support Ash and others in the community who are going through something similar and I really feel that as a result of that talk we must now be the most dementia friendly village in th…

Driving with dementia

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At the memory clinic when we were given the diagnosis my first question was 'will he still be allowed to drive?'.  The Dr said that we would have to tell the DVLA and they would then get in touch with her and ask for her opinion before making a decision.  She asked what I thought and I said without hesitation that he didn't have a problem with driving.  Ash was an advanced driver with our local police force for 30 years and even if his reactions weren't what they used to be he was still better than 99% of the driving population but we were both still anxious.  On the day we filled in the form Ash was grey with worry and, although I tried to hide it, I was concerned too.  We live in a very small village and if he couldn't drive he would lose all of his independence and I could see his health deteriorating rapidly.  Luckily the DVLA listened to the advice and issued a licence for one year.  Twelve months on, as his health and well being have improved so have his driv…

Dementia friendly holidays in 2019

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Christmas and New Year celebrations are now over and maybe you're thinking you have nothing to look forward to over the coming months.  If this is the case then look no further than The Thomas Centre in Lincolnshire, England.  I wrote about this a couple of months ago but if you've just joined us or need a little reminder The Thomas Centre is a holiday destination set up to cater for children and families affected by autism.  Jan and Richard Creane who own the centre have decided that this year from 26th April to 3rd May their wonderful place will be available just for families affected by dementia which means that you can book a short break in one of their beautiful self catering cottages safe in the knowledge that those around you will have some idea of what you're going through.  If your loved one is having a bad day or you just can't find enough energy to move out of the Centre there will be others feeling exactly the same.  The indoor heated pool is available for …

Really great start to the New Year

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Last night we were invited to friends for supper and there were six of us which was a bit of an experiment.  Those of you who follow this blog will know that Ash is fine with four people when we go out but I hadn't tried six.  Having said that I had planned to try it out soon and these were the friends I was going to try it with so that was a good start.  Anyway there was a plan in place as usual; menus had been checked, topics of conversation thought out, the usual 'no questions' reminded about and we were good to go.  An added complication was that Ash had been out all day bush beating and I had no idea how he would cope when tired from all that fresh air but I'd warned the friends and said we might have to leave early which they understood so I thought we'd just go with the flow and see how it all went.  I'm so pleased to be able to tell you that it was a wonderful evening.  We ate fantastic curries, Ash joined in all conversations other than the political d…

A guide to being a good friend

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I have learnt more about the value of friendship over the past year than I would ever have thought possible and frequently my breath is taken away by the support and understanding that seems to come in waves.  Not one single friend has backed away from us and some, where we've lost touch over the years, have even returned to our lives with gusto.  There are phone calls and emails to check we're ok, invitations to meals at the pub, arrangements to meet for coffee and bookings made for weekends away all of which mean that we are able to lead an 'almost normal' life.  In fact we are in more of a social whirl now that at any time over the past three or four years and we're enjoying ourselves.  I have said before that others report the disappearance of friends as soon as that diagnosis looms into view and my gut feeling here is that much of the time it's because people don't know what to expect or, more importantly, what is expected of them.  I appreciate that o…

Love is a many spendored thing

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Last week I told you that I took my mum to see an old school friend of hers who is now living in a home.  While at the home we were introduced to a chap who was there visiting his wife who has dementia.  That might not seem extraordinary but the news that he travels 20 miles each way every single day to spend time with her was.  He sits next to her at lunch to make sure she eats and then spends the afternoon with her.  Recently he has cut his visits short so that he gets home in daylight but, come the spring, he will be back to his regular hours.  Apparently he plays the piano and has not only given a keyboard to the home but has got together with 2 others who also visit their wives every day and the three of them have formed an in-house band playing regularly to residents and guests alike.  What struck me most though was how proud of his wife he is and how she knows exactly how he feels about her.  We were discussing holidays, which you will have gathered by now are a passion of mine…