Memory for two

We had a really good start to the day.  Ash woke in a good mood which is always a blessing and, even though he had no idea how his routine normally went, we got to breakfast unscathed.   This morning went a little haywire when he decided to have a second breakfast/early lunch (the two meals are indistinguishable) at 11am but I managed to stop myself commenting so all was well there.   Then he got it into his head that S was coming and was decidedly unhappy when told she wasn't so, in her absence and as a very poor substitute I think, I sat and watched a property programme with him.  This cheered him up no end because we could talk about the work he's done on this house and how ours is so much nicer that those we were looking at - in our opinion of course - and he could see how much he's achieved over the years.   This afternoon then was going really, really well right up until a wave of tiredness swept over me at exactly the same time as Ash realised that the clocks change

I had a very long day out yesterday to see how Ash did with S instead of me.  I had a plan of course and, of course, nothing went to plan, at least not in the  morning but I got away and the best part was seeing the smile on his face when I said I was going out and S was coming.  He didn't question the timings or the fact that it was still dark and, in fact, was totally uninterested in my plans for the day ahead which seemed an excellent sign. So S arrived and I left.  We'd exchanged emails the day before so there were some loose plans in place for what they might do and she'd read all the information on Ash's routine so knew how he usually spends his day and, for the first time in a very long while, I left with a light heart. I got home 14 hours later to discover they'd had a perfectly lovely day and I hadn't been missed at all.  They'd done the shopping, taken Max for two walks, been out for a cup of tea and had a drive around spotting places they both kne

 I've mentioned lots and lots of times how amazing our friends have been both before and since Ash's diagnosis.  They've been there for us in so many ways and I have absolutely no idea how we would have managed without them. I hear from others about friends disappearing  as soon as dementia is mentioned but that has been so far from our experience that I can't even begin to guess what it feels like. We haven't lost a single friend since that dreadful day when our world came crashing down.  Instead old friends we'd lost touch with have come back into our lives and new friends have appeared on the horizon, every one of them wanting to help. There are so many examples of solidarity I could give you from invitations to meet up to phone calls to check we're ok, emails, messages, comments on the blog, following of the facebook page, so may ways that let me know we're not on our own and it makes all the difference.   So now a recent example.  Last week building

I starting writing this afternoon and had begun to tell you about what a success yesterday had been.  The shopping trip had been a triumph with Ash taking a completely different role to his usual one.  Normally he passively pushes the trolley round while holding the list and crossing items off as I add them to the ever growing pile.  Yesterday S pushed the trolley, told Ash what item to look for from the list and he identified the brand we usually buy.  He was right almost every single time and his confidence built with every find.  Not only that but they used his bank card to pay the bill which was yet another thing he was so proud of. S had sent me a detailed email last night telling me what they'd done, the subjects they'd talked about and the fact that Ash didn't seem to slow down at all.  Last week by mid afternoon he was mixing his words up and getting confused but not yesterday so I was going to tell you that too.   Those were all the things I was going to tell you a

I had such a lovely morning out drinking coffee with friends that I almost forgot the new normal that is my life nowadays.  That feeling didn't last long of course. In a previous life Ash used to do the grocery shopping.  He would go through the cupboards, draw up the list, go to the supermarket, fill the trolley and do everything else that came with keeping us fed and watered including cooking all the meals.  Then we started going to the supermarket together, then he put the weekly basics on the list and I added the rest, then I drew up the whole list and on and on until we got to where we are now. S is coming tomorrow and, because I'm having a very lovely and very busy birthday week, she's doing the shopping with Ash.  Of course I knew I would have to write out a detailed list, remembering to put every last thing on it rather than relying on having me to fill in the gaps as I suddenly remember an essential that isn't on the all important slip of paper that Ash carries

 It is/was my birthday today and I have had a very lovely time.  You may remember that last year Ash's nod to the day was to look at the date on the clock, say 'oh, it's your birthday today' and that was it.  This year brought with it even less response than that.  He didn't notice the cards or the presents which were dotted around and showed no interest in where I was going this afternoon except to say that he didn't want to come and being slightly grumpy when I got home but, unlike last year, I found I wasn't sad at all.   You'll probably know by now that, as a family, we always made the most of special days.  Birthdays, wedding anniversaries, Valentine's Day, Christmas, all of those were a cause for celebration.  Presents were always a surprise and laughter was always part of the celebration so, when dementia came calling and Ash started to lose interest, I wasn't quite sure what to do.   Of course I mentioned my quandary here and one particul

Most of the time I think I cope quite well with what's happening to us.  For various reasons I'm fitter, healthier and happier than I've been in a very long time.  We've got into a bit of a rhythm with this new way of life and as long as Ash is settled and calm then I'm mostly contented with  my lot.  What I've discovered though is that it doesn't take much to knock me off track. Every Monday we drive into town for a market day visit to our favourite cafe where we sit in the window with our drinks and watch the world go by.  Ash has got to the stage where he's comfortable enough to either just sit or to pass comment on what he can see through the window and it's a nice way of spending an hour. This morning, as we walked in Ash saw someone he knew.  Someone he knew from his working life and whom I'd never set eyes on in my life.  They had a lovely chat, both pleased to see the other, and then we moved into our regular window seat where I left Ash

Last week I decided a clear out of my office was long overdue so I gathered bin liners, rubber gloves and cloths together, took a deep breath and got started. I went through teetering piles of paperwork which had been in danger of toppling over, sorted through shelves, cleaned out drawers and put each item either in the recycling box, through the shredder or in a pile for throwing out.  So far, so good.  Eventually I could see the surface of my desk, I found documents I thought might have been lost for ever and, gradually, as the room started to clear so did my brain. I was finally satisfied that it was as good as it was going to get so I placed the pile for throwing out in a bin liner along with the paper from the shredder and gave Ash that bag to put into the general waste bin (black) and the other stuff into the recycling bin (grey).  Remember those two things because they are significant to this story. The next day I took some magazines out to the grey bin, lifted the lid and found

 I have a horrible feeling that I wrote a post very like this just after L started with us so I forgive you if you're thinking 'here we go again'.  All I can say is that this time it all feels different and, although I'm trying to keep a lid on my hopes, they are rising little by little just because Ash is so, so happy. Last night he managed to stay awake most of the evening watching his favourite quiz show and answering questions which was lovely to see.  He was up at 1am in a confused state but when I went to him he wasn't anxious or stressed and soon went back to sleep.  This morning the brain fog was less than usual and cleared quicker than usual and so it went on.  He has smiled more, laughed more, joked more and even given me a hug which is something that hasn't happened since I came home from my week away in May.  Now do you see why I'm optimistic? S emailed me a detailed description of their day and it seems that they had lots of fun, much of it conc

I've had the most wonderful day today.   Firstly 'S' the new carer arrived not only on time but, in fact, a few minutes early and it quickly became obvious that she was there much more in the role of a friend rather than someone who was being paid to look after Ash.  I have no idea whether the feel good factor will continue but the signs are very positive so at the moment I'm just going with the flow.   With support for Ash in place then I escaped and made the most of a present given to me by friends for my birthday last year.  This was a visit to a spa, a gift which, due to covid, lockdown and caring difficulties, I haven't been able to use before now but this afternoon I was ready to make the most of it.  I used the sauna then lowered myself into the icy plunge pool, moved onto the hot tub and then did it all again twice more.  I'm particularly proud of my bravery in getting into the plunge pool but what I remember most is smiling the whole afternoon, well the

 Not only does Ash usually wake up between 6am and 7am every day but most days he's earlier rather than later.  It takes a minimum of three cups of tea to clear the fog from his brain and then he comes downstairs, gets washed, cleans his teeth and takes Max for a short walk before getting his breakfast.  Getting the breakfast usually takes at least half an hour and then he sits to watch the news while he's eating. This morning my car was booked in for it's MOT.  Based on our usual routine and the half hour journey to get there I'd made the appointment for 9.30am and slept solidly through the night knowing that was doable.  And so to this morning.  I got up as usual at 6 and waited to hear the signs that Ash was up and about, ready for the first cup of tea.  I went on my laptop, checked emails, researched some stuff for my day out at the end of the month, tidied my desk and waited.  Eventually, as all my timings were swept away one by one, I started to plan how to manage

This afternoon I had a choice.  I could clean the house or I could sort out the area we jokingly call 'the wood yard'.  Can you guess which I did?  Yes, you're right, the wood yard won and we now have a pile of logs ready for the fire, I've discovered a whole sack full of small pieces of wood waiting to be split into kindling and I have space to move.  I had a go with the chain saw too and you know how much I love that.  The end result of all that effort is that, gradually, I'm bringing some sort of order to our firewood supply.  It's not necessarily an order that will be obvious to anyone else yet but for me it's something else that I'm managing to organise and take control of which is never a bad thing. I also have good news on the carer front and the important thing here is that this time there will be no use of the term 'carer' because this is a completely different scenario. The person who has come to our rescue is an old friend and ex work

  For a very, very long time life here was dark.  Everything was a struggle, nothing went right and happy memories eluded me.  Occasionally there were flashes of light where I remembered something we'd done which had made me smile but they were few and far between.  Instead it seemed as though life had always been difficult and nothing had ever been right between us even though I knew deep down that wasn't the truth. So I sunk deeper and deeper into myself, dressed in black and hid myself away mentally and emotionally if not physically.  I've discovered however that it really isn't in my nature to be down for ever and gradually I've felt myself resurface; I've uncovered the old me and I've realised there's a person within worth resurrecting. The interesting thing here though is that, in the discovering and uncovering, all the bad memories have begun to float away to be replaced by lovely memories of how life really did use to be.  Not just Ash as his who

Sometimes I think that all I do is moan on here but not today.  You may remember that we were to be without electricity all day which meant we had to be out of the house with very little to do and you may also be reading this to find out how we got on.  Whether you're here by accident or design I'm delighted to tell you that we've had the loveliest time. I'd decided that we'd go to Boston (in Lincolnshire, not in the US - nothing that exciting) just because it's somewhere we rarely visit and it's only 24 miles away, far enough to take us a decent amount of time to get there but not so far that Ash would be out of his comfort zone. First we went for coffee and a wander around a couple of large home furnishing shops, then we got in the car, drove into the middle of town and went to a newly opened department store for lunch.  None of this is anything we would have done pre-dementia but it was perfect for today.  We both hate shopping of almost any sort and in a

I'm used to our new normal and I'm used to the normality shifting on a regular basis but tomorrow our electricity is off all day and it's at times like this when I realise how fragile our hold on normality is. In the past if we were to have a whole day without electricity we'd just get in the car and drive.  I'd begun to say there that we'd have gone out for coffee then lunch and then a wander around a garden centre or somewhere similar but then I realised it would have been in the days when Ash would have run a mile from a garden centre and once again I was reminded how much our life has changed. So it wouldn't have been a garden centre and I'm fairly sure it wouldn't even have been lunch out.  Instead Ash would have been hugely enthusiastic about driving a couple of hours up into 'proper' hills, donning rucksacks and walking boots and spending the day out in the fresh air with a picnic and a flask of tea.  Not only that but it would have ha

 So we really are without a carer at the moment which makes life a little bit difficult on a weekly basis but my biggest disappointment has been the cancellation of my week away at the end of the month.  However you'll be pleased to know that it's not all doom and gloom because a friend has stepped into the breach so that I can have one very long day out during that week and I have plans for it. Because this friend hasn't stayed with Ash before I've been updating the information folder I first put together for Jake at the end of May and added to for L in August and that has been an interesting experience in itself. Foolishly I didn't save the changes as a new document but will definitely do that next time because I've realised it's an excellent way of keeping track of where we are and how far we've come. By updating that folder I've realised that it now takes a minimum of three cups of tea before Ash's head is clear enough for him to get dressed;

 Last night I was reading in bed when Ash came through looking confused.  It was 11.30 and he'd been in bed for about half an hour but seemed to have fallen asleep then woken up and not known where he was.  This has happened before so I didn't think too much of it but got him back to bed then sat ready to talk about what was worrying him.  What I didn't expect to be worrying him was that he still had no idea where he was. His words were jumbled so I messed things up a little just because I had no idea what he was trying to tell me but I waited and listened, trying to make sense of it all.  Eventually he said 'I don't know where this is' as he threw his arms out and managed, with that one gesture, to encompass the room.  'This is home' I said.  'So this is where we live?' he responded, followed by 'how long have we lived here?'  I told him we'd been here thirty six years at Christmas and reminded him, unnecessarily of course, that we&#