Memory for two

I'm back and still relishing, you'll be pleased to know, the thought of my few days away.  There were films to watch, books to read and silence to enjoy in a way I can't do at home.  Don't want to get up in a morning? never mind, just stay in bed.  Not ready to go to bed (or actually fancy going to bed early) that's ok, suit yourself.  These are such simple things for anyone not living a life affected by dementia but for those of us that are they're rare and should be enjoyed whenever they're on offer.  This may sound odd but one of the best things was setting out on a walk and abandoning it because it was boring and it had started to rain.  This is something that sounds so easy to most people but with Ash if we've set out to do something we have to follow through because any deviation from the plan causes chaos in his head and that is to be avoided at all costs. And how did he cope?  Apparently when I'm not here he can make his own morning cup of te...

 All official birthday lunches, breakfasts and visits are now at an end but the treats continue for a few more days with the arrival tomorrow afternoon of Jake and the very nearly 7 year old.  They are coming specifically so that I can disappear for a few days of peace, quiet and a definitely lack of responsibility but as far as Ash is concerned they are coming for a 'boys' weekend and he seems quite happy with that.  Jake and I have learnt some tricks from past trips and this time I've sent a complete plan of Ash's daily routine including where he likes to go out for tea, what he likes to watch on the tv, what time he likes to eat and anything else I could think of which will keep his life as close to normal as possible and consequently make him feel safe even when I'm not around.  I've also mentioned again and again that I'm not going to be here for a few days and once again he seems relaxed about it all but we've been here before when he's seemed ...

You may be bored with my birthday reporting but I'm not so here, as promised, is a more detailed description of yesterday.  I was determined it was to be a day to enjoy but my resolve was challenged very early on with the following conversation just before we got up. Ash: is it your birthday today? me: yes Ash: I thought it was. That was it and this from the man who loved nothing more than to plan birthday surprises for me from a bottle of champagne produced halfway through a beach walk to a new car parked right in front of the house just waiting for me to climb in to and drive up the road to a night or two at a special hotel.  So many surprises and treats over the years reduced to a question and a statement.  For a while I was overwhelmed by sadness.  Not, I hope you note, by irritation or anger or shock just sadness that the boy/man who's been by my side for the past forty four years is long gone.  A friend asked me last week if I thought Ash would find it dif...

Quick post to let you know I have the car and it really is as much fun as I hoped it would be.  Slightly rocky start to my day but collecting that car and driving it home put such a huge smile on my face that everything else faded into insignificance.  Couldn't decide whether or not to wear the purple coat with it but then remembered the line from the poem 'Warning' by Jenny Joseph that says 'When I am old I shall wear purple. With a red hat which doesn't go' and realised that I could substitute the red car for the red hat so there you have it.  We (and yes Ash did come with me) went to collect the red car with me wearing my purple coat.  Ash took the photo while I wasn't looking so you'll have to excuse the pose and wait for the full details of my day until tomorrow. Don't forget you can sign up to have this delivered straight into your inbox, just remember to click on the validation email (which may be in your junk mail/trash box).  You can share s...

 Today began with an adventure.  Not a big adventure in the normal scheme of things but in my dementia affected life it was so out of the ordinary as to be extraordinary and very, very exciting.  So what was the exciting bit?  Friends collecting me from the house so early this morning that it was still dark was the exciting bit.  Gone are the days when I could do this without a thought or a plan in my head so I'd got up at 5.30 as soon as Ash woke and took him his cup of tea and medication.  Went back downstairs to get ready for my birthday adventure then wrote two notes for him telling him where I'd gone, one for the side of the bed and one for next to the kettle so that he didn't panic when he got up and didn't panic when he went downstairs.  My lift arrived at 6.40am on the dot and off we went to watch the sunrise.  Now my hopes weren't high as I'd seen the weather forecast but we arrived at our chosen viewing point and waited in the car to see...

A very difficult start to the day when Ash woke in a blind panic because he couldn't remember a single thing about yesterday.  There are obviously an awful lot of things he doesn't remember and mostly he can laugh them off nowadays but this morning was different, a whole day had disappeared into a black hole and, although he tried and tried, he just couldn't work out where it had gone.  It seemed as though, unlike previous times, that the day just wasn't there which meant there was nothing to get hold of, just a void where there should have been at least one memory.  I had no idea what to do and no way of making him feel better so we lay in bed while his brain was in turmoil and I discovered once again how selfish I am.  There was a walk arranged you see, to be followed by lunch, and it was the very first of my birthday treats arranged with two of my oldest friends (over 50 years of friendship and counting) and I really, really didn't want to cancel.  Leaving As...

 This morning we had a visit from Mark a lovely Admiral Nurse who's there to support us and give us ideas and strategies should we need them.  The very best news as far as I was concerned is that he knows about Contented Dementia and was interested in what I'd learned from the wonderful Penny Garner and then, on top of that, he took away with him some of my business cards showing details of the blog so that he can hand them out to other families he visits.  The visit was a great success in that Ash was happy to chat about his days at work but also happy to talk a little about his dementia which is a great step forward.  He's going to call on a regular basis now because it seems to me that since we've had professionals coming into the house Ash is getting more and more confident with talking about his dementia which, in turn, is making him more relaxed about it all. Once Mark had left it was lunch time at which point Ash realised he hadn't taken a pork pie out of the...

In an email to Jake last night, when I told him about the disappearing gammon and the reappearing pork pie, I asked 'why does he put the pork pies in the DVD cupboard?'  Jake's reply was 'Dad doesn't know why he does it so let's not bother asking the question even of ourselves' and he's right of course.  There is no rhyme or reason to dementia or to a dementia affected life it just 'is' and we are where we are with it so I'm back with the realisation that the only thing that can change is the way I look at it all and the only person who can make the change is me.  Disappearing and reappearing food is not the end of the world, it doesn't change the progress of dementia and, as long as I don't let it, it doesn't have any real impact on our lives so let's put it to one side and move on.   After a slightly difficult day yesterday then, I woke this morning to the realisation that I needed to get my head straight on all of this and ...

 Two or three times a week Ash mixes a  bowl of sandwich filling made to his own secret recipe and has it for breakfast and lunch every single day.  I don't know exactly what goes into it but the two main ingredients are ham and cheese so each week I buy a small gammon joint to cook and put in the fridge so that he can help himself and give him some feeling of independence.  Last Thursday there'd obviously been a run on the small joints so we bought a large one which was cut in half, one half was cooked and the other half put in the freezer.  Friday morning Ash made a brand new bowl of sandwich filling using the brand new gammon joint and all was well.  This morning I got back from my walk to be informed that he'd had to get the second joint out of the freezer and it needed cooking which meant he'd used up the first one in two days.  As with the pork pies I hunted in every cupboard in the kitchen as well as every shelf in the wine rack but to no avail....

If you mention the weather to Ash you always get a response as he tells you again and again that there's no such thing as bad weather only bad clothing.  He will say that he goes out in sunshine and rain and is happy with either but that's not quite true.  It's true that he will take the dog out in any weather condition but other than that, if the view out of the window isn't unremitting sunshine, he doesn't know what to do with himself.  This is at complete odds with the old Ash who really would be out in all weathers;  poor weather would find him collecting wood, sweeping up leaves, tidying the bin area, lopping branches from trees, strimming the church yard or any number of other healthy, physical activities.  Sunshine would see him gardening, cleaning windows, mowing lawns, cutting hedges and, when he'd finally run out of things to do, he'd sit in the garden looking around and taking pride in what he'd achieved.  Today was a prime example of how his ...

Do you ever wish life was different?  Of course you do, we all do.  Life would be so much easier if we had more money, more time, more people around us, fewer people around us, if we could go out to work, if we didn't have to work ................ Life is rarely exactly as we want it to be and a diagnosis of dementia highlights the loss of all those plans we had for the future, all those unfulfilled dreams and all those wants and wishes we now daren't put into words.  HOWEVER is life ever all bad?  Personally I find it easier to look for the silver linings in my life than to dwell on the things that are now missing or won't happen and my upcoming birthday is, I think, a case in point.  If you've only just joined us or haven't been paying close attention you may have missed the fact that I have a big birthday arriving very soon and a few years ago when I thought about it I had lots of plans and ideas.  We could go somewhere exotic on holiday; we could have a...

 If you've been following the blog for a while you may remember the time I found a pork pie in the cupboard in the dining room followed, a few weeks later, by the pork pie at the back of the wine rack.  Then there was the third pork pie which I think I forgot to tell you about found by Jake, again at the back of the wine rack, so I've been keeping an eye on pork pie consumption for a few weeks now and thought I had it under control at least until this week.  Last night however I noticed two pork pies sitting side by side on the work top in the kitchen so quietly put one back in the freezer and the other in the fridge for lunches over the next few days.  Just got back from lunch with a friend to find yet another sitting on the work top, obviously straight out of the freezer, and no sign of the one put into the fridge by me last night.  This means of course that somewhere in the house there lurks a pork pie just waiting for mould to form before coming out with its...

It's lunch time and I'm about to start 24 hours without my laptop which I know is a first world problem but it really is my link to the outside world and my evening defense against the quiz shows which Ash loves so much.  However the reason for this trauma is that, as well as the new car, the new phone and the new clothes, I've treated myself to a new laptop and, as I'm fairly useless when it comes to new technology, I'm leaving it to the store to transfer everything from one device to the other.  After this I'm going to scale down the treats but for now they make life just that little bit more fun so what's not to like?  Ash has also said he'll come with me to the bright lights of our nearest seaside town when I take the laptop so I can feel another coffee coming on.  Life still isn't quite what it was and it never will be but it's not bad either.  It's all about perspective. Don't forget you can sign up to have this delivered straight i...

 A very odd thing happened this morning.  Ash came through to tell me he'd had an email regarding the final electricity bill for my mum's house and asked what I wanted him to do.  I told him to forward it to me and then waited for it to come through, and waited and waited.  I thought about commenting on the fact that I hadn't received it but decided to wait a little while longer and then, about an hour later, he came to say that his email wasn't working and he needed me to look at it.  When I looked he hadn't opened the messages (four of them) and obviously hadn't attempted to send them on to me but the really odd thing was that he seemed to have no idea that they were there and that he has done this very thing every month for the last year.  Yet another example of the dementia tightening it's grip and I wondered whether I should be sad for him but if I'm honest this latest slide seems to have brought with it a lessening of his frustrations and an accept...

 I nearly didn't write this post because it's so dark I thought it must be almost supper time.  Luckily I looked at the clock to find that not only is it not supper time but we actually have two and a half hours to go before I need to start cooking.  So what to write about on a dark, grey and rainy afternoon?  Should I tell you that the shopping trip this morning went well even though we needed a wheelie basket instead of the usual trolley or should I talk about the lovely chat I've had over a cup of tea with a friend this afternoon?  Should I tell you that yet more new clothes have been delivered and I'm now wearing a t-shirt which tells me to 'Smile every day' which will be quite easy as it's a size 'S' and that's very exciting for someone who hasn't been that slim for at least thirty years? Should I tell you that I'm about to pay for the new car which will mean it's very real even though I'm not collecting it for another 18 day...