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Showing posts from February, 2020

Calm thinking saves my sanity

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Two weekends ago we had heating but no hot water.  Now have a new hot water tank so you'd be forgiven for thinking all was well but two hours after switching on this morning the boiler is leaking fumes so strong I've had to switch it off.  Emailed the plumber and now waiting for a reply so will keep you posted if your interest hasn't waned at the very thought of our current problems.  The thing is that I was in despair when I first noticed the fumes and even had a 'woe is me' moment but then I made myself think clearly and realised that life is rarely all bad.  We have an open fire so at least one room will be cosy warm, thanks to friends we have a large wood pile to keep it going and, unlike last weekend, we have an immersion heater so with the flick of a switch we can have as much hot water as we need/want.  Last weekend I said that I could cope without either heating or hot water and last weekend we had heating.  This weekend I can cope without the heating if I …

A breakthrough!

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Last night I realised there had been a breakthrough in our lives.  Ash had laid the table as he usually does while I organised tea and I'd left him to it as I usually do but this time as I took the plates through I noticed something - the place mats and coasters didn't match!!  Once upon a time this would have caused me no small amount of anxiety and, in fact, has been the cause of great hilarity among family and friends over a number of years but last night I looked then shrugged my shoulders (metaphorically I think but who knows), sat down and ate my food.  A breakthrough indeed and a sign that not all is bad in the world of dementia.  Whether I'll feel the same about non-matching pegs on the washing line come the summer though is another matter entirely.

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The 'new skills list' is getting longer

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Last night once again Ash was fiddling with his camera and once again I tried to ignore him but then I realised that he does this when he's mucked up one of the settings.  He doesn't want to say he's done just that and so he sits clicking first on one thing and then on another until he has absolutely no idea how he's got to where he is.  At first I had no idea either but then a few weeks ago I decided, because I was desperate, to try and reset it (being without the camera would be on a par with being without the dog for Ash and I couldn't bare the thought of it) and I actually managed to do it.  This was the first time Ash hadn't managed to sort it out for himself so, although I was pleased with myself, I sort of banished it to the back of my mind as a one-off.  Have now used the new found camera skills three times in as many weeks and am starting to know where to look and what buttons to press which is certainly progress.  What's even better though is that…

A confidence building day

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Two things today boosting the feel-good factors in my life.  First came the YoungDementia UK newsletter promoting a piece I'd written for them which is now on their website https://www.youngdementiauk.org/janes-story-its-not-bad-life?fbclid=IwAR0JtMDUdSojI7TGVRLSp9qpOrWWGq1WVeBVNINb8BPHheBexnINNRAKc30 and their facebook page.  It's very odd reading something you've written several weeks after the event and there were definitely things I'd change but ultimately it tells what my  life was like immediately after diagnosis and how I've got to the (much better) place I'm in now.  So that was first thing this morning and it was closely followed by a meeting with Dawn Parker, Quality Assurance and Performance Lead for the Older Adults division in Lincolnshire NHS.  If you remember, a few weeks ago I was invited to go and talk to the Board about our experience of the diagnosis and the weeks/months following it.  Dawn was the one who invited me and this meeting was a fo…

A walk shows the way forward

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My Tuesday morning walking pal wasn't available today so I dropped casually  into the conversation that I was going out and wondered if Ash wanted to come too.  Told him where I was planning on walking and felt really happy that he sounded so enthusiastic about the whole idea.  H was ready to leave before I was and all the signs were that this was going to be a lovely morning just like the old days (when will I ever learn?).  First indications that all was not well came in the form of a rigid, silent travelling partner for all of the six miles we had to drive down the road.  We then walked the first hour in almost total silence but the sun was shining, the views were lovely and the dog was happy so all was not lost.  When we finally reached the halfway point and I announced we were now on our way back he brightened up a little and even managed a couple of comments about the scenery but when, further on and to fill the silence, I remarked on what a lovely walk it was I was met with…

The aftermath of 'me' time

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Every so often when Jake was little he would go to stay with one set of grandparents or another so that Ash and I could have some time to ourselves.  While he was away we would have some breathing space, some time to call our own and to be a couple while he had a lovely time without us breathing down his neck.  He always burst back into our lives again with renewed vigour however and we were left reeling and wondering whether it was worth it (I'm sure I don't need to tell you at this point that it was, in fact I once called it 'marriage survival').  My weekend away has been something like that.  I had a lovely time catching up with friends I haven't seen for forty years as well as those seen more recently but not regularly enough; I relished the silence in the house and the lack of responsibility; I laid in bed long after I would normally get up and it was all sooooo relaxing.  All good things must come to an end though and this morning we're back to normal onl…

Saving my sanity

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It's the weekend and thanks to Jake I have two nights and two days to recharge my batteries.  I'm revelling in the silence of my mum's empty house; choosing whether or not to turn on the tv (and at this very moment choosing 'not'); waking up in bed and luxuriating in the fact that I don't have to get up immediately; deciding for myself when to eat meals; opting to drink my morning tea downstairs instead of having to take it back to bed; meeting up with friends without having to worry about getting home by a certain time - all of those things that I used to take for granted but which now have to run to schedule in a very particular way in our every day life.  You see it isn't the big things that make a difference any more, I don't need exotic holidays, expensive meals out, crowds of friends around, I just need time to myself and space for my head to clear.  Two days will do it and I'm lucky enough to be able to get two days just often enough to keep …

Diggers, castles and police cloaks

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We have the 6 year old staying and just for a while life is fun again.  Interestingly this time Ash is struggling a little with doing all the things the 6 year old expects (in the past just the assumption that he could do everything meant that he could) but it really doesn't matter.  Last night lighting the coal fire was excitement personified while this morning helping 'Grumps' get the coal, sticks and logs in provided entertainment for both of them.  A mini digger on the track at the front of the house today also provided interest for a while but then the discovery of Ash's old police cape, handcuffs and truncheon from his very early days in the police was absolutely captivating.  The cape stayed around those little shoulders for about three hours with no sign of interest waning.  Ash had to explain how the handcuffs worked, when he wore the cape and why he carried a (wooden) truncheon, photos have been taken and there's a plan to email those photos to Mummy and …

The real person?

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A while ago a friend and I discussed whether, when dementia hits, the person left behind is the real one.  I disagreed as I felt Ash would never have been this timid, anxious, pale version of the human being I once knew but it did make me think and I wonder now whether the man I share my life with at this point is the pared back version.  Whether this is who he would have been if all those life experiences had never happened.  What if we hadn't met on that school ski trip; what if he hadn't joined the police force and left home at 16;  What if we hadn't moved to this village thirty seven years ago and made the friends we did; what if we hadn't spent summer after summer criss-crossing France with the camping gear; what if we hadn't been invited by friends to do things we'd never have thought of if left to our own devices; what if we hadn't spent every spare penny travelling to amazing places.  All of those things boosted his confidence and self-esteem allowi…

The ups and downs of dementia

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Yesterday we collected logs from a friend.  Went over in Ash's beloved truck, filled the back with wood then came home to unload.  I offered to help but wasn't needed which was good and Ash then spent a happy couple of hours unloading logs into a wheelbarrow and wheeling the load to the back of the house to add to the ever growing pile.  When we lit the fire last night he was a very happy bunny.  He could see what he'd done and he knew he'd made a difference so last night was full of chat, smiles and a return of his sense of humour.  Luckily I now know better than to expect it to last as this morning, because I'd picked up dirty clothes from the bedroom floor last night for washing and hadn't replaced them with clean ones, he had no idea what to do when he got up.  No idea where to look for clothes and no idea what clothes to look for if he did locate the right cupboard which meant he didn't know whether to get out of bed or spend the morning lying there lo…

Feeling VERY proud of myself

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Right at the beginning of all this I talked to a lady in the village whose husband had dementia (I didn't know and it was almost my very first ever conversation with her) and she told me how at that point she was doing everything; chopping logs, getting the coal in, decorating, all those jobs that are usually shared out in a relationship.  I couldn't imagine it and had no idea where I would begin with most of the things Ash did.  At the end of last week the pull switch in the bathroom stopped working so we went to buy a replacement unit and yesterday tried to fit it.  Ash took the old one down and put the new one in its place but no joy, still no light.  We were however covered in dust (house built circa 1830 so no plasterboard ceilings for us) and it was getting dark so, rather than grope around in the gloom, we decided to leave it until daylight and then get someone to look at it.  Last night I studied the instructions for myself and this morning decided to have another go. …

Makes a nice change

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Last night I looked through the tv programmes on offer and felt a sense of deep unease - a serious lack of quiz shows between 7 and 9pm on every channel.  What on earth were we going to do?  The last time this happened Ash sat white faced and panic stricken through the whole evening and that wasn't an experience I wanted to repeat so I gave it some thought and had a look through the paper before telling him about the absence of normal viewing.  Then said I'd seen something else we might like (no detail so no chance of him having to think about whether he'd like it or not) and switched on a programme about wild life and sea life in the South Pacific.  Well what a success that was.  He watched spell bound through the whole thing even when I fell asleep then, when I woke up, he proceeded to tell me about all the things I'd missed.  Haven't seen him that animated for ages.  Lovely to see and lovely to have something to talk about other than answers to questions on quiz…

Another milestone

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Sometimes something happens that can seem totally insignificant to the outside world but when it happens to you it comes like a blow to the stomach.  There've been lots of these small events over the past few years as Ash has gradually morphed into another being, one unrecognisable from the man I used to know and this morning yet another one came out of nowhere and knocked me sideways.  We'd planned to go over to my mum's house to check on everything but then I looked at the forecast again and didn't like the look of Storm Dennis so went off to find Ash and tell him I thought it might be better to go another day.  Now this is a man who liked nothing better than to take his truck out into the snow and see how many times he could get it to spin on the (empty) icy roads;  the man who took one look at the 'black' sign at the top of a ski slope and unthinkingly turned his skis in the direction of the bottom; who taught himself to surf in the middle of the ocean in F…

Friends come out in force

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I thought you might like to know that, thanks to friends, our hot water difficulties are resolved.  After the blog went out last night lots of local friends got in touch offering the use of showers, baths, hair washing facilities and even temporary accommodation and all of them offered with the understanding that Ash probably wouldn't cope (which he wouldn't).  I would cope very well however so my mind was instantly relieved of thoughts on how I would manage without washing my hair for 4 days.  Now I just had to make sure Ash kept clean and we'd be ok (we can still use the washing machine so clothes aren't a problem).  Then a friend messaged me to say she and her husband had an unoccupied flat not far from us where we were welcome to go and have as many baths as we wanted/needed until our hot water was back on again.  I told Ash and the smile that lit up his face told me this would work.  The place is empty and anonymous, we would be able to drop in whenever we wanted …

Life is currently full of chaos and calm

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We have no hot water.  In fact, not only that, but we currently have no hot water tank instead there is an empty space where the tank used to be and a gap showing us what the loft looks like.  The problems began last week when hot water slowed to a trickle within a couple of minutes meaning baths were centimetres deep/shallow and anyone needing a shower (me) had to be in and out within two minutes.  I contacted our wonderful, reliable (I know, how unbelievable is that?) plumber who came out to look and announced that we needed a whole new tank.  Expensive but necessary so he ordered it and came today to fit it.  Unfortunately he ordered the wrong tank, a mistake not discovered until the old one was in the middle of the bedroom floor.  A replacement's been ordered but won't be here until Monday and in the meantime we have heating but no hot water and all I can do is fret about how I'm going to wash my hair.  Ash on the other hand isn't fretting at all which at first sur…

Focusing on the new

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So I've made the decision not to celebrate Valentine's Day this year and knew Ash wouldn't notice on the day but, as we headed around the supermarket this morning, I braced myself for the usual comments, questions and jokes. How to bat them away?  How to explain without hurting his feelings? Even though I knew he really wouldn't mind, in fact would barely register that it wasn't happening, we were surrounded by red; red chocolate wrappers, red roses, red cards, the works and I felt I should have that explanation ready just in case.  How we fool ourselves, those of us in a relationship affected by dementia.  Of course he didn't comment, of course he didn't make the usual jokes.  He doesn't notice the world around him any more or, if he does, he certainly doesn't connect any of it to 'us'.  In the past he would have joked about the whole thing but he would still have made it special, now though 'we' play no part in his life and that…

Valentine's Day - to celebrate or not to celebrate

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I know that lots of people don't bother with Valentine's Day especially if they've been part of a couple for years and years but we always did.  It was a celebration of something special but also yet another opportunity to have some extra fun because that was what life was about.  Even in the couple of years leading up to the diagnosis, when things were more difficult, they were never totally impossible and Valentine's Day along with birthdays, wedding anniversary and Christmas were times to show the two of us that we'd made it through all the ups and downs and we were still ok.  It wasn't about presents, it was about showing we cared enough to make an effort.  Picnics on the beach (yes even in February looking out at the North Sea), special meals at home, eating at the local pub with a red rose on the table, all just something a little out of the ordinary.  One day but lots and lots of years together.  Last year I knew I wasn't going to get a card but I bo…

What did you do that for?!!!

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For years we've had a complicated system with our tv which entails 2 different remotes, one for on/off and adjusting the volume, one for changing channels and all because we've run the tv through a dvd recorder.  As Ash only watches quiz shows now the recorder is superfluous to our lives but the one time I suggested moving it into my sanctuary the crankiness entered the house so I left well alone.  Yesterday I had to reset the system twice because he used the wrong remote to change channels, frustration set in (on his part not mine I hasten to add) and he ranted about the need for two remotes.  After listening for a few minutes I suggested disconnecting the dvd player so that we would only have to use one remote.  This was agreed to with enthusiasm but set me a bit of a problem as I wasn't the one to connect it all up in the first place (along with most other things in the house this wasn't one of my jobs) however as you know I've come to the conclusion that there …

Becoming a camera expert

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Ash loves his camera and rarely leaves the house without it.  We have photos of holidays, weekends away, days out and lots and lots of the amazing countryside in and around our village.  Village events, family celebrations, walks with the dog, all have been documented and saved first in photo albums then in shoe boxes, then on a computer and, more recently, on an external hard drive permanently attached to his lap top.  Recently the photos have had a tendency to be out of focus, for the colours to be slightly 'off and the sad thing about this is that he often doesn't even notice but just shows them off as being the perfect images he sees in his mind's eye however he's still had the old enthusiasm and every time something interesting happens it's recorded for posterity (or at least until Jake comes to clear things out when we're no longer around).  His camera is a decent one (he really can't get his head around the fact that nowadays you can use a phone for …

A bright weekend beckons

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If the start to yesterday was joyous (smiles, hugs and conversation) today we were back to normal (Ash lying rigid and silent in bed trying to work out how his day was going to go) and I thought about the fact that, however hard we try, it's almost impossible to ignore the small flickers of hope when things are going right.  Unfortunately those small flickers are always extinguished far to soon.  Anyway, in the circumstances what's a girl to do?  Luckily, on my agenda for today is the collection of the 6 year old from school and almost a whole weekend with him and his dad.  If you don't have a 6 year old in your life I highly recommend acquiring one although he/she really does have to be close enough to lighten your world, be the bright star in your sky and the balance to the chaos going on around you.  When my two favourite boys are with us, for a few short days everything settles back into line and we are a 'normal' family again so I'm looking forward to this…

it's a bewildering life

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I've decided that the only way to get through this is, as much as possible, to put a lid on any emotions I have with regard to Ash.  Life with my real husband was full of hugs and cuddles but this one is much more self contained so for reasons of self preservation I make sure I expect nothing and then I'm not disappointed.  Except this morning he rolled over in bed and gave me a huge hug.  It took me completely by surprise and was totally bewildering but I recovered myself, gave him a hug back and then went to make the tea, emotions still mostly in check.  When I got back normality had resumed and not even hand holding was on offer but he was in a good mood and happy so, all in all, not a bad start to the day.  Not only that but, in the absence of the plumber and a fixed water tank, I managed to get in and out of the shower before the hot water ran out (think 'old video machine on fast forward' and you'll get the picture) so am now ready to face the day with renewe…

People treat you as they see you

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I was listening to an interview on step parents this morning and the interviewee, who was a step mother herself, was asked if she felt people had ever treated her differently because of her role.  She thought about it for a moment and then said no she didn't think that had ever happened but she also thought it was because she was quite confident in what she was doing and that in her opinion 'people treat you as they see you'.  I like this view very much and can see how it relates to every one of us.  How many times have you looked at someone and thought 'they seem arrogant, I don't think I'll bother with them' or 'she seems miserable and I don't need anyone else's stress' or 'wow, she's amazing and obviously doesn't need anything from me'?  So from one angle it's obvious that we shouldn't judge by appearances.  The person who appears arrogant is quite possibly covering up a big inferiority complex, the one who seems m…

Keeping a sense of self

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I was asked last week at that meeting with the board of the Lincolnshire NHS Partnership Trust what advice I would give to others in my situation, those who had just been given the diagnosis and didn't know which way to turn, those who were struggling to cope, those who had thought that the change in their relationship was all their fault.  There were lots of things I thought of during the next few minutes but almost the first words that came out of my mouth were 'don't lose your sense of self'.  It's all too easy when you're caring for someone twenty four hours a day to forget about you and to think you should come second to their needs but it's not true.  I saw a quote recently which said something like (and I paraphrase here) 'it's not about putting yourself first, it's about putting yourself on an equal footing' and I loved that.  I didn't feel I should put myself first, whatever anyone said about looking after myself it felt selfish…

Sometimes it's the smallest of things

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Yesterday we installed a new freezer and today we transferred what we'd managed to save from the old one to the new one.  Ash offered to do it then stood in total confusion as he tried to work out where to start so I went out to 'help'.  I hope by now you've realised that mostly I can cope with just about anything that's thrown at me but do you know what tipped me over the edge today?  The final food item taken out of the old freezer was a bread loaf and I suggested he took that into the kitchen and put it in the bread bin.  He disappeared inside with it and I thought no more of that loaf until I went to make a sandwich at lunchtime only to discover the defrosted loaf sat on the worktop next to a bread bin containing two more loaves.  What really got to me was that one small thing - he hadn't looked at those loaves and thought 'we only need one out I'll go and put this back in the freezer'.


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Who's really in charge in a relationship?

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Before dementia, when life was normal, I think people thought I was the one in charge in this relationship and to be honest, although it was a very equal partnership, I had the illusion that most things were down to me.  Now dementia is very much in our lives I realise what an illusion that really was, a fact brought home to me (and not for the first time) this morning.  The freezer stopped working on Wednesday night.  It was very old and we rarely have much in it nowadays so I suggested buying a smaller one and putting it in a different shed to the one that's housed a freezer for the past twenty years.  This went down much better than I expected and after a painless shopping experience we came home and looked at the freezer's prospective new home.  Unfortunately that new home needed far more preparation that I'd realised so I did my usual thing and shut the door on it all and left it for another day.  That other day was today and I couldn't put off the challenge any l…