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Showing posts from September, 2019

Getting carried away in the garden

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Got a little carried away in the garden with a set of loppers this morning resulting in the exposure of a rickety wooden fence created by Ash around 30 years ago.  That piece of fencing doesn't quite cover the ugly corrugated iron panel behind it so isn't looking at it's best right now but the whole thing has given me an idea for planting and I'm looking forward to next spring when I can put new garden plans into action.  This is such a leap forward from my previous gardening position of letting Ash do it all (or, in recent years, leaving it to run wild) that I'm quite taken aback by my enthusiasm.  The other lovely thing though about all this outdoor activity is that Ash comes out too and always seems to find something to do.  At first, when dementia started to creep up on us, he would spend hours sitting in a chair staring into space leaving all his usual jobs undone.   I got cross because I thought he was getting old before his time and he had no idea what to do…

Brownie points definitely accumulated

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For those of you who don't know the meaning of the term 'brownie points' they are 'an imaginary award given to someone who does good deeds or attempts to please' and I gained them in abundance for organising our day out yesterday.  Ash was so buoyed up when we got home it was just like having the old him around and when I asked him at bedtime if he'd enjoyed himself he replied 'I was just about to say how brilliant it was'.  Not only that but he's spent the morning sorting out the photos he took and then shouted me through to see the slide show he'd set up on his laptop so I think we can safely say the day was a success.  Even the rain today hasn't dampened his spirits.  This really was a fine example of capturing something he was interested in and developing it into something we could both share.  I may never manage it again so am going to bank those brownie points and bask in the glory for as long as I can manage.



Don't forget you can s…

'Vintage' is the word of the day

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When Ash and I met back in the mists of time (1976) he rode a motorbike which according to my mum I wasn't allowed on.  As a slight diversion the one thing this taught me was never to tell Jake he couldn't do something - no point!  Over the years motor bikes, either his own or those he rode at work, were a part of Ash's life right up until he retired and then he seemed to lose interest.  A couple of weeks ago though found him watching some super bike racing on the tv and he kept coming through to tell me about it.  This rarely happens now so I thought I'd look at our local track and see if there was anything on.  It so happened that today was a vintage race day so I got tickets and along we went.  I have to report that we had such a lovely time.  I know less than nothing about motor bikes so Ash was in his element telling me all I needed to know (and more), the weather was ok, the people were friendly and the atmosphere was relaxed.  At one point we found ourselves tal…

The ups and downs of me

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I've written lots on here about Ash's mood swings but you will probably (definitely) have noticed I have them too.  We were never like that.  Ash was never moody and if I even thought of it I was told in no uncertain terms to snap out of it so, after the first few months of marriage, I realised it wasn't worth it.  As a result we rarely argued and mostly just laughed our way through our days together.  Life is no longer like that for either of us.  Ash's moods go up and down like a yo-yo depending on the weather, his stress levels, his expectations of himself, his energy levels ...... so many possible contributing factors that I rarely see the lows coming however hard I try to anticipate them.  My mood swings are different in that they seem to be connected to nothing in particular.  There is no single thing on any given day that I can say for certain will give me a high or a low and all I can do is welcome the highs and work through the lows.  Those days/evenings when …

Yesterday, today and tomorrow - the ups and downs of life

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Went to see my mum yesterday and discovered that she still has the power to amaze me.  I'd been sent a resident/family satisfaction survey and had printed off a copy to go through with her.  She was more than happy with everything and is completely settled apparently but then we had the following exchange:

Mum:  I do wish I hadn't had to give up quite so soon.
Me:  Give up what?
Mum:  (waving her hand around) everything ('and come to live here' was the inference).
Me:  You moved in here 3 days before your 90th birthday Mum which I really don't think counts as giving up too soon!

Today I'm at home and it's been a funny sort of day.  Ash started out full of beans and ready to re-stick two of the carpet treads on the stairs.  He knew what tape he needed, where to get it from and eagerly planned the trip to fetch it.  Fast forward to this afternoon and confusion covered his face as he stood looking at the stairs trying to work out how to pick up those pieces of…

Envy is a curious thing

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Over thirty years ago when I realised I wanted a baby but Ash wasn't quite ready to join the adult world and become a dad it seemed that everywhere I looked there were pregnant women, new mums, happy families.  I was surrounded by them and thought that everyone had what I wanted.  Today I look around and seem to be surrounded by happy couples leading 'normal' lives.  They have proper conversations, laugh at things together, share memories, hold hands, hug each other and, most importantly, plan for the future.  All those things I thought Ash and I would continue to do for years and years to come.  In the general scheme of things I'm not an envious person.  I've always been happy to share in the success of others and equally content with what I've had at home whether that be material things or relationships but now I find myself wistfully wanting things that have disappeared from my life and the thing is this time I know what I'm missing.  However, luckily I&…

Trip to London

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Had a lovely couple of days meeting up and spending time with friends.  Friday saw lunch with two friends I have known even longer than I've known Ash and that was just brilliant.  We sat outside in the sunshine and put the world to rights discussing mothers, children and events in the distant past all of which left me with a very welcome feeling of wellbeing.  Then came my trip to London yesterday with yet another friend to discover buildings not usually open to the public.  We arrived early in the morning when the city was just waking up and for a couple of hours felt as though we had it almost to ourselves.  We got lost a couple of times mainly due to the fact that I'd left the A-Z on the kitchen table so we were reliant on technology but it didn't matter and anyway as a result of getting lost we discovered a building that hadn't been on our list of places to see but was well worth the diversion.  The sun shone, we found a great pub for lunch, we walked miles and ca…

It's ok to be scared I think

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When I think about it the events in the supermarket yesterday were a bit of a wake up call.  I know life is different to how it used to be but this new life is one I've got used to and feel quite settled in most of the time.  So much so that my mind had obviously begun to play tricks on me and I'd started, without realising it, to think that this was where we were going to stay.  Life had changed but this was the level we'd settled on.  Yesterday made me realise that life is continuing to evolve but not in a good way.  It won't all be bad obviously and in fact most of it, if managed properly, will be good but eventually the reality of dementia will set in and that's not something I'm particularly looking forward to.  This morning I woke up with a sick feeling in my stomach and realised I'm just a little bit scared.  I know the feeling won't last (the usual thing of 'head up, shoulders back' always works if I try hard enough) but just for a momen…

Progression?

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When your children are small and by your side every day you don't notice how quickly they're growing and changing.  Then they go on a school trip or to stay with grandparents and when they come home you can't believe the difference in them.  Living with someone who is living with dementia is a little like that.  You're by their side on a daily basis so, often, you don't notice any decline, it all just creeps up on you so gradually that it's almost not even there.  Today I did notice something which I think shows the progression of Ash's dementia although I'm not entirely sure if that's the right word here as to me progression should mean steps forward whereas I think we've moved in a backwards direction even if it is only slightly.  I've said before that in the past Ash did all the grocery shopping.  He drew up the list, went out and bought everything, put it away in the cupboard and then used what he'd bought to cook our meals.  Over th…

Taking a trip down memory lane

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At 8.30am yesterday Ash came bounding through with the biggest smile on his face that I've seen for a very long time and announced that he'd decided to drive over to where he grew up and, armed with his camera, take photos of all the important places from his childhood.  I was a little unsure of this project as he hasn't been to the town for years whereas I have and I know how much it's changed.  I couldn't see how he would be able to find his way around and/or take photos at the same time.  However we met when we were teenagers, went to school in the same town and I knew most of the places he was going to visit so I asked if I could go too partly because I thought it sounded fun but mostly so that I could keep an eye on him while he was on his adventure.  I quickly contacted my very understanding friends to reorganise my day and off we went.  The town is about an hour from us and he wasn't quite sure of the way but that was ok as I was there to direct and then…

A party!

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A few months ago we were invited to a birthday party.  A very dear friend was to be 80 this month and I have known him since I was little.  Ash has known him for almost as long as I have and the date of the party was last night.  Mum was invited as well but I chickened out of that one as the responsibility of taking her and making sure she stayed on her feet all night without ever once toppling over felt like more than I could manage.  So that left the two of us and I really wasn't sure about Ash.  As you'll know if you've been following this blog for a while he really doesn't do social situations now especially those involving lots of people so I said that I would definitely be there and that he might be with me but I very much doubted it.  Cut to yesterday morning and the usual question of 'what are we doing today?'.  I told him about the party and said that I was going but it was entirely up to him whether he joined me or not and then left it at that.  At lu…

Musings on a new life

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Yesterday was a non day really and today seems to be heading the same way.  There are neither highs nor lows, they're just time in space and my mind went blank when I sat down to write this post (the same reason I didn't write anything yesterday).  No traumas, nothing amazing, just normal days.  Not that long ago this is something I dreamed of and it's nice but it's really not conducive to producing an interesting blog so I thought that today I'd try something different.  A few months ago I wrote something to enter into a competition in a writing magazine.  I didn't hear anything so assume the judges didn't like it but I thought you might like to read it.  The thing is it's much longer than a normal blog post so please don't feel you have to read it but it might be useful/interesting and if you think it might help someone else please feel free to share it.


The Absent Husband My husband is missing, absent without leave, no longer in my life.He began to…

Changing my expectations

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I've been thinking back over yesterday and decided that I maybe need to change my expectations.  As a family certain dates have always been important; birthdays, Christmas, anniversaries etc and we've planned surprises for each other just for the fun of it.  Bottles of champagne have been produced on the first night at a hotel, picnics have been conjured out of nowhere on a day out, a box of chocolates would be waiting on my seat in the car if he came to collect me from work ........ the list goes on and on.  Quite often Ash would be the one creating the surprise but I did my share and so did Jake.  Even as Jake got older and became a grown-up presents were still surprises, outings were for fun and holidays were somewhere a little out of the ordinary.  We even had, and still have to a point, a competition between the three of us for the best cards each year.  Life is different now though and I think that's the problem.  Against all evidence to the contrary I still think de…

A wedding anniversary with a difference

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Well guess what, the day didn't exactly go to plan but really why am I surprised?  I'm beginning to think that's the story of my life nowadays.  We got off to a bad start from the very beginning and the day began to go downhill from there with the lowest point being when Ash decided he didn't want to go for that walk on the beach that we'd planned with such glee yesterday.  Right there and then I was overwhelmed firstly by the feeling of responsibility for our lives that is now solely mine and then, like a blow to the stomach, a longing for our old life.  The one where I would have planned the trip to the beach but Ash would have made it special by producing from a rucksack smoked salmon and a bottle of bubbly halfway through the walk.  He would have remembered glasses and napkins, would have found just the right spot to sit and and would have told me he loved me.  Today all he said was 'I think I'd rather stay at home'.  This then is the reality of dem…

Confusion caused by numbers

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You may have to focus a little more than usual today folks as I think this is going to sound slightly confused as a story.  Important dates for you to remember when reading are:

11th September (UK date) - our wedding anniversary
9/11 (US date) - our wedding anniversary but also the date of the dreadful terrorist attacks on New York.  We always say that our anniversary is on '9/11'
19th October - my birthday

This morning while drinking the usual cup of tea in bed I said 'it's my birthday soon'.  Ash said he knew that so I told him what I would like for my birthday (having my 'sanctuary' decorated) and that Jake and the nearly 6 year old were coming to stay for the weekend.  Ash instantly looked confused and asked when they were arriving.  I was equally confused as my birthday is on a Saturday this year so said 'they're coming for my birthday'.  Turns out he thought my birthday was tomorrow and that our anniversary was in October.  This apparently…

Summer's almost over, should we be nervous?

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According to the forecast we haven't quite finished with summer but I like to plan ahead.  This time last year I was beginning to panic about winter and how to get through the dark days ahead.  I asked for ideas to keep myself occupied, for upbeat music recommendations and suggestions for keeping calm.  We've come a long way since then and this year I'm actually quite looking forward to the short days and inclement weather.  I've bought a gardening book telling me what to do each month and, to my surprise, the area at the back of the house doesn't go into hibernation until spring.  Apparently there are still jobs to be done out there.  I'm also planning on doing some decorating, am looking at new recipes to try out, thought I might invite friends over for coffee/tea on a regular basis (to try out some of the new recipes possibly), have books to read, films to watch and I might even go for walks with the dog.  On top of all that I've decided to take up with …

How things have changed

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You may remember that a few months ago we went through a really difficult patch with shouting, tears and despair on both sides until, against all advice and known strategies, I drew my line in the sand.  Some way through that awful time a friend suggested that perhaps Ash was struggling with the fact that I'd recently given up work and whereas in the past he would have been able to put his feelings into words he couldn't now do that and so his struggles came out in his behaviour.  To my shame I hadn't considered that possibility but it was suddenly so obvious I wondered why it hadn't occurred to me.  I couldn't understand why I'd been so obtuse but I thought about it again last night and realised it was because in the past he wouldn't have had to put it into words just because none of it would have been a problem.   Ash would never have struggled with me being at home more but would have loved the fact that we could spend more time together.  A few years ag…

Normality with added 'oddness'

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I'm not even sure that 'oddness' is a word but it sums up today perfectly as periods of complete normality were interspersed with moments of 'oddness'.  Yesterday we replaced the tv in the dining room (and those are words I never thought I would hear myself say) with a slightly larger one which is much better as I can see the questions when watching Ash's beloved 'Pointless' but which didn't quite fit underneath the shelf.  I didn't say anything but Ash pointed it out saying he could sort it and, this morning, sort it he did.  The shelf has been raised and the tv now fits perfectly.  Some of you may wonder why I mention this as it seems so trivial but others will realise that it was a major undertaking even if, as we know, he would once have done that job without even thinking about it.  So that was a good start to the day.  Then this afternoon I went over to see a friend.  I was away for approximately 30 mins and came home to find Ash had gone …

The continuing saga of ..................

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...the washing up liquid.  A little less than a month ago I reported on the disappearance of a bottle of washing up liquid.  I searched high and low for it but that bottle was nowhere to be found so I bought a new one and now that's gone missing as well!  Last night it was at the side of the sink and this morning it wasn't, simple as that.  Once again we've searched the cupboards, the bins, the sheds and everywhere else we can think of but it's nowhere to be seen.  I'm fairly sure Ash has found a new home for it and am equally sure it's joined the one from last month but where that new home is I have no idea and neither does he but that means nothing.  Today we went off to my mum's house in a bit of a hurry as there's a viewing this afternoon.

Sometime into the journey 
Ash:  have I brought the dog lead?
Me: no
Ash: never mind he doesn't really need it.

Later in the afternoon
Ash:  I think I'll take the dog for a walk
Me:  don't forget you did…

From the sublime to the ridiculous

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The night before last I woke up at 4am (and I'm sure lots of you know that feeling), lay awake for half an hour and then, feeling very bored, got up and went downstairs.  Ash came to find me about an hour later so we had a cup of tea and then fell back to sleep all of which will sound normal to some of you and very boring to others.  Where's the humour or interest in any of that I hear you ask.  Well the interest came this morning when we woke up at a normal time and the first thing Ash said was 'did you sleep better last night?'  I was astounded not only that he'd remembered but also that he was interested when how I'm feeling is very low on his list of priorities nowadays.  So that was the sublime, the ridiculous came a little while later (and in more ways than one) when we were listening to the news and there was talk of Boris, Brexit and the workings, or not, of parliament.  Ash suddenly said 'what are they talking about?'  'Brexit' was my r…

Focusing on the present

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How often do we really focus on the present moment?  How often do we stop rushing around just to notice what a good time we're having?  Do you ever wish you did it more often?  I wish and wish I'd focused on the present when I was at school and had so many opportunities to learn;  I wish and wish I'd focused on the present when Ash and I were teenagers and had no real commitments;  I wish and wish I'd focused on the present before we had Jake and it was just the two of us;  I wish and wish I'd focused on the present when Jake was growing up and we were a family unit;  I wish and wish I'd focused on the present when Jake left home and it was just the two of us again; instead I was always rushing around dealing with the current crisis, focusing on work or planning the next thing to look forward to and, because I didn't focus then, I sometimes struggle to remember now.  There are amazing memories from each of those times that I can call to mind on dark days bu…

That's not my .........

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When reading John Suchet's book (My Bonnie: How Dementia Stole the Love of my Life) one of the things I noticed was how often he said 'that's not my Bon') and it made me think of the set of Usborne books 'That's Not My (penguin, tractor, plane, owl etc).  For those of you without little people in your life the basis of these books is that you're presented with something that looks almost the same as one you already have but it's slightly different - 'that's not my penguin, it's too shiny, that's not my tractor it's too fluffy' and so on.  This got me thinking and I started to draw up a list of my own.  You see the boy I fell in love with and the man I've grown up with over the past 43 years has turned into someone that's almost my Ash but not quite.  So here you go:

That's not my Ash he's
too irritabletoo lacking in confidencetoo cautioustoo quiettoo calmtoo old And then there are all the other things in the same v…

Sometimes there's a very reasonable explanation

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The nearly 6 year old has a tiny fridge in his bedroom here so that, if he wakes at some unearthly hour, he can get his own breakfast using the milk in that fridge and the cereal he stashes away just for that purpose.  He also has a favourite bowl and jug.  The first two mornings went swimmingly but then on Thursday night when I went to get the bowl and jug to put up in his room they were nowhere to be seen.  I've mentioned before that Ash has begun to put things in odd places so, as he'd cleared the pots away that morning, I searched high and low.  I emptied cupboards, I looked through drawers, I checked the bin but still nothing.  Not a problem (they're not our only bowl and jug) but irritating all the same.  I put it all to the back of my mind however and kitted out the breakfast area with alternatives.  Next morning I opened the door on the dishwasher and there were those favourites, sitting meekly waiting to be washed!  So the answer isn't always 'dementia'…