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Showing posts from February, 2019

The perfect storm

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As I'm sure you've noticed, the clouds have been gathering over our lives for a week or two now as the tussle for the driving license goes on.  Ash has seemed fairly calm this week but that obviously wasn't going to last and matters haven't been helped by the memory clinic report on his assessment last week going astray somewhere between there and the surgery.  On Tuesday when it became clear that something had gone awry our new lady from the clinic actually came to the house with hard copies of her notes and the assessment.  Ash and I raced to the surgery explaining that we needed a GP to read them and then say whether or not he/she would consent to him driving.  We left those pieces of paper in what we hoped were safe hands and returned home to wait but no phone call or email came our way.  Yesterday I went to London for the day to see the Dolly Parton Musical '9 - 5' (hence no 'post'  - and I love the fact that several people have contacted me to che…

Thinking outside the box.

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I keep saying that there is a solution to every problem if only we look hard enough and realised this morning how true that is.  For those of you who are interested I'm still manage to stick to my running programme.  Those of you who know me well will know doubt be amazed at my staying power (something for which I'm not renowned).  This morning I completed the first run of the fifth week and after Thursday I'll be more than half way through which, in itself, is a minor miracle.  I am not the running type and hate physical exercise but needs must as I've gradually come to realise it's the only way I'm ever going to lose weight.  Three years ago my favourite form of relaxation was to settle down in front of the fire with a large glass of wine and a large bar of chocolate.  Then I gave up alcohol.  Then I gave up sugar.  Now I've taken up running and this one is the hardest of all.  The Couch to 5K app helps as someone (Olympic athlete Ben Johnson actually) te…

Best foot forward

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Quick update on the driving license front first.  The report from the memory clinic has now been sent to the surgery so, giving it time to arrive and be read, my plan is to phone first thing tomorrow morning to see if a GP will approve Ash to continue driving until the DVLA make their decision (under Section 88 of the Road Traffic Act - who knew!).  Ash seemed to be coping with me chauffering him everywhere and I had high hopes that all would work out.  So that's the background to this post, now onward and upward.  Had a lovely day yesterday including lunch out with the five year old and family and then home to carry on gardening in the sunshine with Ash alongside me.  What could be better.  I talked about 'host' mode a couple of days ago and this was in full view over lunch with conversation flowing, managing to get own meal from the carvery and lots of laughs along the way.  So we collapsed in front of the fire last night me still thinking everything was ok then I looked…

Gardening for the (almost) uninitiated

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Right up until last summer Ash had always done the gardening, with me in a supervisory role, but over the couple of years up to his diagnosis he had needed a little prompting.  Last summer he had no interest whatsoever and the beautiful space outside our back door was beginning to look decidedly unkempt so I had a choice.  Either I could go for the natural look and hope that wildflowers rather than weeds would take control (unlikely I know) or I could start to take an interest in what was growing out there and work out how to keep it alive.  Luckily I have a very good friend, a gardening expert, who has spent years trying to initiate me into the joys of gardening and she was delighted with my newfound interest.  Until now our routine has been for her to come and look at the gaps in the flower beds, join me on a trip to the garden centre, choose the best plants for the job, leave me to pay for them and then return home with me where she would place them in just the right position givin…

Where have all the mugs gone?

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A long while ago I wrote on here about having to hunt for floor cleaner as Ash had taken to putting it in different cupboards, sometimes in the kitchen and sometimes in the utility room but never where I thought it was going to be.  Three days ago I went to get a mug from the tree which sits on the work top in the kitchen only to find it bare.  I looked in the dishwasher only to find it empty so no joy there and stood scratching my head for a while until I thought to open the cupboard where we keep all the spare mugs.  Does anyone else have one of these?  I keep the nicest (matching) mugs out on show and then have overflow ones tucked away out of sight.  I have no idea why I do this as we never use those mugs and they are mostly ugly but for some reason I can't bring myself to throw them away.  Anyway I opened the cupboard and there were all my lovely matching mugs piled up and teetering on top of the ugly ones while the mug tree sat completely empty in full view.  This has been h…

Getting the best out of life.

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It's very easy to be overwhelmed with life changes when you're bogged down in circumstances beyond your control but life is what you make it and sometimes those changes can actually be used to good effect.  For instance I go over to my mum's once a week which could be viewed as something else to be fitted into a busy schedule especially on the weeks when she is driving me up the wall.  Instead I love the four hours I have completely to myself while she's at her 'posh lunch club' and whenever possible use them to relax in peace and quiet.  In dementia one of the things that families often find hard to handle is when their loved one goes into 'host' mode, behaving differently when others are around than they behave with the one most closely concerned with caring for them.  This can have the effect of making it seem as if they 'don't have dementia very badly' which I can see must be difficult if you're trying to persuade professionals, or e…

Further update on the driving license

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Following the visit from the memory team lady on Tuesday I was able to tell the DVLA that Ash had now seen a professional in connection with his dementia.  Unfortunately they weren't allowed to take the information over the phone and we had to return the form which had arrived on Saturday (and there was me thinking we lived in the digital age).  I quickly filled it in giving the contact details of the clinic, took it to the post office, paid £6.50 for it to be delivered and signed for by lunchtime the next day and we're now waiting to hear.  The license runs out tomorrow so by my calculation today is his last day of driving until the new license arrives meaning that we had the potential to reach crisis point not too far into the future.  I left Ash first thing this morning in a state of doom and gloom and not for the first time I worried all the way to work and all the way through the morning.  By lunch time I couldn't stand it any longer and rang him to see how he was.  M…

Support is now available!!!

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Following my slightly distraught phone call to the memory clinic on Monday we had a home visit from a member of the team yesterday (24 hrs later).  Apparently we had slipped through the net so it really is lucky that I'm fairly resourceful, reasonably capable, have a great support network and had been pointed in the direction of Contented Dementia www.contenteddementiatrust.org/and Young Dementia UK www.youngdementiauk.org.  Anyway we now have a name and contact number if we need any help which is rarely a bad thing.  The purpose of the visit was to get Ash to do a short test involving 30 specific questions some of which needed written answers and then he answered questions about his well-being.  Some of you reading this will have already been through something similar and it certainly brought back memories of previous visits to the clinic especially the one where Ash got so many questions wrong and was so confused that it prompted that fateful diagnosis.  That was 14 months ago. …

The many different versions of me

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When Jake was 5 I had three different jobs in three different places.  I would wake in a morning and, if I couldn't work out what day it was, I panicked because, if I didn't know what day it was I didn't know where I was supposed to be.  Something similar is happening in our lives now.  There are so many different versions of me nowadays that I sometimes find it difficult to remember who I'm supposed to be in any given circumstance.  The list below isn't in any particular order but just shows how things are panning out.

A mum - this one isn't too onerous as Jake and his family are very independent so actually they support us far more than we support them.  I do however need to remember not to offload all of my thoughts and concerns on to them.A grandma - This one is just lovely and an area of joy in our lives that makes both of us smile.An employee - was going to call myself a worker but thought that made me sound too much like a bee or an ant.  I only work 2 da…

Ups and downs of a life affected by dementia

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So Saturday was a dreadful day, yesterday was brilliant and today has just been hard work.  This is probably normal life for most people but when I have my optimistic head on I like to think that my life will be on an even keel the vast majority of the time.  Nothing has actually happened over the past few years to suggest that this is likely to be the case you understand but I live in hope.   Anyway arrived at mum's this morning to find her in agony as a result of a fall at the weekend when she twisted her back.  This meant that, instead of taking her to the posh care home for her weekly visit then having a few hours to myself, I ended up booking an appointment at the osteopath which in turn meant re-organising a work meeting and in between those two things trying to organise that all important driving assessment for Ash.  This wasn't as easy as I'd hoped.  Bearing in mind his license expires on Friday the earliest I could get an appointment was the end of March so in des…

Today is another day and I'm feeling positive!

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Spent yesterday feeling rubbish.  Every time I thought about the driving license issue I started to panic and couldn't see a way out of the difficulties and then felt sick in the pit of my stomach.  This really doesn't happen very often nowadays as I can usually turn my thoughts to the positive and that gets me out of any doom and gloom but yesterday I couldn't shake it off.  Woke this morning to find really helpful suggestions in the comments section of yesterdays post.  Lesley suggested hassling the GP to see if we could get an emergency appointment, Sarah suggested contacting the GP to see if we could pay for a private appointment (not something she usually advocates I know but needs must and all that) and Ann told me about driving assessment centres.  I had heard of them but for some reason thought they were somewhere Ash would be referred to by the DVLA.  It hadn't occurred to me that we could book an assessment ourselves (and how useful it would have been when I …

Driving license renewal continued

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Some of you may remember that just before we went away the DVLA wrote to say they were contacting Ash's GP to ask for his opinion on Ash's fitness to drive.  This was difficult because at that point the only time he'd seen a GP was the week before and that was for a review of his anxiety treatment.  She was new to the surgery, didn't know him and his ability to drive wasn't part of the discussion.  She also wasn't the GP named on the DVLA letter.  I quickly phoned them and gave the new GP's name then made an appointment for us to see her.  I explained when I made the appointment why we needed to see her and also explained the urgency because we were going on holiday and I didn't want any hold-ups that could possibly be avoided.  Unfortunately our surgery isn't renowned for communication between staff so when we arrived for Ash's appointment it was to discover that the message hadn't been passed on and the GP had already returned the form to …

Commitment required

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Were you listening the other day when I said I have no will power?  There have been times in the past where I have committed to doing the best I can (bringing Jake up to be a decent human being ((check) and setting up/running a day nursery while in a situation I couldn't get out of (check) are the two that really stand out but this current scenario of helping Ash to navigate his way through the trials and tribulations of dementia is the first one I think I have embraced wholeheartedly.  Lessons were learned from the previous two (Jake was the real experiment poor thing) and the commitment this time seems, strangely, a little easier.  There is no thought of escape, no wondering how life could be different, no consideration of different ways of living.  We are where we are and that's all there is to it.  This running thing however is a completely different kettle of fish (I bet that change of direction took you by surprise!).  Last night I set the alarm for 6.30am.  I needed to …

Dementia is catching in this house

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I do know that dementia isn't catching of course but three days ago I bought Ash a valentine card and I can't find it!  I didn't expect one in return as he's failed to mention the day and managed not to see all the reminders in every shop we've been in but I really wanted him to have one from me even if it was just to let him know that in the depths of his struggles I still love him.  I was very proud of the fact that I'd found one which wasn't sloppy and I know I got it home and secreted it somewhere in the house so that I could present it with a flourish this morning but I now have no memory whatsoever of where that secret place was.  I've wracked my brains and definitely have a picture in my head of removing it from the bag but the rest is a complete blank.  This has shown me two things  the first of which is that this is something Ash goes through on a daily basis but, unlike me, he can't laugh it off or make a joke of it knowing that it's a…

Minimizing the inches

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I saw a post on fb yesterday which said 'only be with someone who loves every inch of you' and it set me thinking as most things do nowadays.  Ash always used to make it so obvious he loved the way I looked whatever size or shape I was.  This was excellent for my self esteem but not so good for my waist line as I rarely questioned whether his view of me was completely accurate.  Things are different now.  He still loves me I'm sure but he's not so good at showing it and his dementia means that more time is spent focusing on his own needs than on whether I look good today.  As a result of this I've begun to look in the mirror a little more and notice that my clothes don't always fit in the right places which means that self esteem has been gradually declining for a while now.  Where once I would have worn a bikini on the beach regardless of my size now I've bought a swim suit, where once I would have worn tight tops now I go for the baggy look.  Something ob…

The thoughts of others

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I have come across two phrases in the past couple of weeks which sum up so much of what dealing with dementia is all about.  The first, which I read on one of the forums I belong to, said 'there is much I would miss if I thought about it too much'.  This is so true and a very good reason not to fall prey to reminiscing about the life you had before dementia entered it.  If you can't help it then the thing to also remember is that the mind plays tricks so the sun wasn't always shining, life wasn't always perfect and you still had to do lots of things you didn't want to do.  I find now that I think back much less often than I used to and when I do it feels as though it was a different life altogether.  It's much better to live in the moment, to enjoy what's happening now.  Living in the past so often stops us from making improvements to the present.  You're never going to be able to recreate the past so why not spend your energy on improving your toda…

Reaping the benefits of the past two weeks

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Back to real life and contemplating the benefits of all that effort.  The general view is that those with dementia need familiar surroundings and that home is best but I think this is one of those situations where you need to use your judgement and plan accordingly.  Before you read the rest of this post you may need to know, or be reminded, that 14 months ago Ash rarely knew where he was; couldn't make a decision; was in a constant state of extreme anxiety; was usually on the verge of breaking down emotionally; was permanently angry at the world in general and me in particular; couldn't remember where we'd been or who with when we were on our way home from somewhere; sat for hours in silence staring into space and seemed to be rapidly descending into his own little world.  And so to the past two weeks:  We have always holidayed and usually several times a year.  Often in this country but frequently abroad and almost always independently so Ash is used to dealing with airp…

End of a holiday

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Packing up this morning to go home and all going well so far.  Ash asked last night what would be happening today and was quite happy when I told him we were being collected at 10am and taken to a hotel for the day before going on to the airport for an evening flight home.  This morning I wasn't sure how stressful he was going to find the process or if he would even know what was going to happen.  His first words when he woke up?  'Are we making our way home today'?  This was amazing.  Not only did he remember we were going home but he also knew there was a long process leading up to boarding the flight and he's been totally calm about the whole thing.  This is brilliant but again planning has come into play.  We haven't brought much with us (only rucksacks) so there isn't much to pack up, I asked him to clear the kitchen while I packed our stuff up which made him feel useful but also means I know exactly where everything is, I set the alarm so we woke early me…

Why here?

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Some people are probably wondering why I've uprooted Ash and brought us away.  Many more people are probably wondering why Orlando when we don't even 'do' Disney so I thought I might take this last morning to explain.  Contrary to popular images of people living with dementia needing to be in familiar surroundings Ash is actually better away from home.  I think this is because he feels there are no expectations on him to do anything, remember anything or to be responsible for anything.  When we're away we seem to reconnect a little, there are new things to watch and comment on, new places to discover together and conversations to have.  We're slightly out of routine but, with lots of planning beforehand, not too much so he's settled and I have time to watch and learn which is my new pastime.   That then is the 'why' but what about the 'where'?  Whenever over the years I've needed a blood test Ash has held my hand and made me recite the 1…

Golf as a spectator sport

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Our apartment here overlooks the most beautiful golf course which has provided more entertainment than I would ever have believed possible.  I'm not generally a fan of the sport but over the past two weeks have found it difficult to tear my eyes away from the dramas unfolding in front of us.  I have often heard it said, by others who aren't fans, that golf is a good walk spoiled but that can't be said here.  For one thing no-one walks on this golf course.  Instead they seem to spend their time playing dodgems with golf carts, driving them as close to the ball as they can possibly get so there's no need to take more than 5 steps at a time.  So there is the dance of the golf carts to watch.  Next is the fact that below our balcony is a very large shrub which the golfers seem mostly unable to avoid.  Either the ball flies through the air and lands in the middle or it hits a tree before landing in the middle.  Today one particular golfer managed to retrieve his ball from &…

Advice from a different perspective

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A while ago several friends told me they'd heard someone called Wendy Mitchell on Radio 4.  She had been diagnosed with Early Onset Dementia at the age of 58 and talked eloquently on the radio of her life, the adjustments she made and how she continued to live well with that dementia.  The friends all suggested I read Wendy's book 'Somebody I used to know' and I nodded and made the right noises however in my head I didn't see how reading a book written by someone on the other side of what I was experiencing could help.  The last two days have been spent reading that exact book and what a revelation it's been.   I have spent the past 11 months watching Ash, observing what makes things right with his world and what sends him into a downward spiral and I've made sure I've learnt from these observations but reading Wendy's book has given me a far greater insight into how he feels and what he's experiencing that I could ever have imagined while lots …

Sunshine works its magic

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Best day of the holiday so far weather-wise and with it comes a feeling of complete relaxation which, as we know, is exactly what's called for where dementia is concerned.  Leaving the clock plugged in overnight again worked it's magic and I'm kicking myself for not doing it before.  I said I wish I'd thought of it earlier but if I'm being completely honest I didn't want to let the thought into my head.  In the past we've both loved a pitch black bedroom and I find it difficult to sleep with any sort of light pollution no matter how small.  Having said that since dementia entered our lives none of this is about me.  I can cope with lack of sleep, I can cope with waking somewhere unfamiliar and it's not the end of the world if, momentarily, I can't quite remember where I am.  None of this is true for Ash and I've spent months learning that if I make life easier for him then it's also easier for me.  Not acknowledging that there was an easy so…

New strategy worked

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Have solved the problem of Ash waking in the night in a panic not knowing where he is or why he's not in his own bed.  In the end it was so simple I can't believe it's taken me over a week to sort it out.  I had packed his clock which tells the day, date and time but at home we unplug it at night because it's so bright.  Last night I left it plugged in.  Result?  One calm and reassured husband this morning.  I have no idea if he woke in the night as he didn't need to shake me to ask where we were so the clock obviously worked on all levels.

This got the day off to a good start and was followed by a trip to the supermarket.  You might think this sounds boring but if so can have no idea of the weird and wonderful items to be found in the aisles of an Orlando grocery store.  There are cakes in every colour you can think of; choc ices for dogs; fresh fruit bigger than you can ever imagine; freezer cabinet upon freezer cabinet full of pizzas of every size and flavour an…

Just over half way ........

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....... and starting to miss you all!  Also realised that this blog is my way of recording memories so am worried that if I don't post then the memories that we're making now will disappear into the ether.  I was thinking a few days ago that almost every holiday we've ever had has produced at least one wonderful experience.  Interestingly it was much harder to recall difficult moments and there were one or two holidays I couldn't bring to mind at all so assumed nothing happened on those at all.  So how is this holiday matching up?

The journey itself was great right up until arrival at Orlando airport.  Unfortunately staff there seemed to have a problem with invisible disabilities and obviously decided that Ash was too young and fit to have a problem.  Got through that though and everything was fine.  Also noted that Ash wasn't fazed by any part of the journey even with the problems at Orlando.  Rest of the holiday is ups and downs.  Luckily more ups than downs and …