Memory for two

 All ready this morning with the new plan.  I had the story worked out, decided to wait until the last minute and was fully prepared at 9.45 when I dropped into the conversation what was going to happen.  Said that L was coming today and Ash's face was like thunder so very quickly said that she was coming to clean because she needed the money and I needed help around the house.  The face cleared, the shoulders settled down and he was happy once again.  Completely understood about me needing help, happy that we were helping L out too and smiling because he could walk Max completely unhindered by anyone and anything. Ready to go then but there was a problem.  L didn't turn up.  No text message, no phone call and a mobile number that went straight to voicemail so that was it, a plan half activated and another day out cancelled.  It was at that point that I realised how much I hate being reliant on other people but also the realisation that it's the o...

 Max the dog is on a diet which entails not only new food but also a new way of eating.  Instead of hoovering his food out of the bowl in approximately 20 seconds flat we now have to put it in some rubber toy which he rolls around the floor eating the pieces as they fall out of it.  I measure the food out into a jug, Ash holds the rubber toy, I transfer the food into it and Ash puts it on the floor.  The filling and placing on the floor is done six times until the food has all gone and we can go and sit down again. At 5pm yesterday, which is Max feeding time, Ash was fast asleep in the chair so, not wanting to wake him, I decided to do the whole thing myself and you have no idea how relaxing it was.  There was a kind of freedom in not hearing myself say 'hold the toy there', 'keep still', 'don't move', 'put it down there on the mat', 'no don't throw it' over and over again until I'm sick of the sound of my own voice. I'm fairly su...

 Ash has decided he doesn't want L to come any more which could have come as a huge shock but I'd seen the signs and was already making plans to head him off at the pass. He's been quite grumpy with her for a few weeks, even before my trip away, and I've been wracking my brains as to how to deal with it.  This morning I had a light bulb moment and, it seems, in the nick of time. You may remember that the original story was that he was being included in a study by the memory clinic where they were looking at how people with Young Onset Dementia spent their days and he was actually quite proud of this fact.  In fact he even went so far as to volunteer the information to some friends a few weeks ago so, of course, I'd begun to relax.  I really should have known better. Anyway, the grumpiness started and then he was rude to her and then he began to ignore me when I got home each Thursday and I could see the whole thing start to disintegrate.  L and I decided to each...

 We went out for a cup of tea again this afternoon and I realised that I'm starting to view these trips out in a different way.  We're never out for very long  - we arrive, drink whatever it is we've ordered and come home again because Ash doesn't like doing anything without a specific purpose and it seemed to me that it was a lot of effort for very little reward. Today I realised it's the whole experience, including the drive, which is important and that changed everything.  We'd gone to the beach again and there are a choice of routes I can take, one of which is much longer than the other two.  I'd taken the long route there so I could buy milk on the way and was in the middle of working out which was the shortest way home when I noticed how much there was to talk about on the long route. There are particular houses that we like, a shop Ash always points out, bicycles decorated with flowers around the town we drive through and all sorts of other things to ...

 The last few weeks have been a little difficult.  Not too difficult you understand and nothing to compare with the issues lots of people living this life are dealing with but exhausting nonetheless.  Ash's mood swings aren't particularly numerous but they still take me by surprise and I never quite know what I'm coming home to whenever I manage to 'escape'. Friday for example saw me out walking with friends in the morning and getting back to find Ash not knowing what to do with himself which always makes him anxious and grumpy with me in the firing line.  The anxiety drifted away once I was home however and the afternoon saw us sitting in the sunshine at one of the local beaches and drinking tea while watching the world go by.   Yesterday morning I was out with different friends and that walk took longer than usual so I drove home feeling slightly sick only to discover him smiling, joking about how long the walk must have been and perfectly happy in his ow...

 This week I've managed two full days just for me.  L was here yesterday and today and both days were  completely different experiences for her and for me.   Yesterday Ash was horrible as soon as I told him I was going to see my mum and he ignored L as she breezed through the garden gate but I was ready for it.  I'd washed some camouflage gear I'd found during last week's clear out and I'd not only washed it but asked Ash to hang it out on the line.  L took one look and started asking him about it all and then listened intently as he told her all about how he used to use it when he was at work.  The rest of the day went equally well but by the time I walked in the house at the end of the day he was completely grumpy again and refused to talk to me. This morning I apologised profusely about having to go back to see mum and Ash was completely and utterly understanding.  He was lovely to L when she arrived, happily waved me on my way and I left ...

If I'm not careful I can get lost in the monotony of days and think that life is very boring but sometimes that's because I still use our old life as a benchmark and that's no use whatsoever.   Because of all that I came on here to tell you that I had my usual Sunday afternoon bout of sadness where I've wallowed in memories of life as it used to be, exacerbated by the sight of Ash watching me as I pushed the lawnmower up and down in front of him and not moving to help.  It's no good telling me that was the dementia, that he can't help it and that he would be horrified if he knew how much he's changed because I know all that but sometimes knowing it doesn't help. So I decided to let you know how I felt in that short couple of hours and how it had coloured my day but you'll be pleased to know that I managed to deflect the sorrow and I've found other things to talk about instead. Life is never all miserable and when it does get me down it's not ...

 Yesterday I talked about how, as a carer, your own needs become sidelined just because that's the easiest way to make life manageable.  So that was yesterday but today this hit me with full force. Jake sent me an email this morning titled 'Birthday' and asking if we wanted to meet up for breakfast on 17th October.  The nearly 8 year old is actually 8 at the end of the month so I automatically assumed it was for him and replied with that in mind.  I accepted of course suggesting a cafe bearing his name as an extra treat and then went out for the day. My day was really, really lovely.  I met up with old school friends one of whom I haven't seen for over 40 years and the time flew as we reverted to the teenagers we used to be.  We had coffee, lunch, more coffee and then tea before it was time to come home and I drove away with a huge smile on my face. Got home to another email from Jake to say the nearly 8 year old wouldn't be at the breakfast and I was stump...

 I realised earlier that I've double booked myself on Friday, not once but twice.  Both in the morning and in the afternoon in fact.  The morning was the one which took me by surprise.   I'd arranged to meet a friend for our weekly walk and she'd found somewhere new for us to go so I was most definitely looking forward to it.  However even as I looked at the map to find the route I was simultaneously planning to get Ash to a coffee morning for retired police officers at exactly the same time.  As I'm sure you realise it's not going to be easy to get him there without stress being involved so the planning was being done carefully and at no point until today did I realise that there was a conflict of interest.   The coffee morning is for Ash's benefit and the walk is for mine but only one of those could happen and I wonder if you can guess which had to be abandoned?  Yes, of course, it was the walk.  I sent the necessary message and s...

We have a wonderful summer house in the garden.  A friend built it for us with Ash's help around ten years ago and it's been our pride and joy ever since.  However a while ago I noticed water stains on the ceiling and realised that it needed new felting on the roof only, of course, it was never going to be just a matter of new felt.  That would be far too simple. The main problem was that tree branches overhung the front of the roof and a hedge was growing up the back of the structure so no-one could get near it to see exactly what the problem was.   I asked for help from various sources and, as ever, no-one let me down.  Branches were lopped off the tree at the front and the hedge at the back, between us and the churchyard, was cut down and ripped out ready for a new one to be planted once the roof was fixed. We arrived home from shopping a couple of weeks ago to find the hedge cutting underway, strolled across the grass to admire the handywork and at that...

 Last night Ash went up to bed before me which is almost unheard of.  I heard him let the water out of the bath and then went upstairs, gave him a kiss, switched off the light and came back down again.   Five minutes later he was downstairs telling me something with great enthusiasm and excitement.  The problem was that I had no idea what he was saying.  He strung words into sentences and then put those sentences together but they made no sense.  Each sentence stood by itself but they were completely unrelated to each other and I listened on becoming more and more bewildered.  I murmured something or other and nodded my head once or twice until, finally, he was satisfied that he'd given me the information I needed and then went back upstairs to bed and to sleep. This shouldn't have come as too much of a surprise because Ash's speech is getting more and more jumbled.  Sentences are mangled on a regular basis, words come out in the wrong order ...

 Another day beginning with the feeling of being hit over the head with a cricket bat because Ash had me up not once last night but twice. I heard him moving around at 2am, made him a cup of tea and got him back to bed only to have a repeat performance at 4.15.  I'm slightly impressed with myself because I'm rarely anything other than patient at these times.  Mainly because I can guess how frightened he must be but also because being cross or bad tempered achieves absolutely nothing.  Nothing that is except to frighten him even more, to make it more difficult to settle him and to make it impossible for me to get back to sleep.  Instead I remember that Ash now struggles to tell the time even during the day never mind when he's awake in the early hours, I recognise that he's frightened because he doesn't know where he is and I'm actually happy that he trusts me to help him overcome his fears. And I did manage to calm him down. he did go back to sleep both times an...

 When you live alongside dementia you are a jumble of emotions especially if the person you're caring for is the one you've loved since you were a school girl.  Ash and I first met when I was 13 and he was 15.  It took us another two years to actually get together but when we did it was the real thing and we knew it.  Because we were so young I think we moulded each other or at least he moulded me and in the best way possible.  He taught me how to laugh at myself, how to have fun, how to take life much less seriously and, most importantly, he turned my life into a series of adventures, every one of them something to be relished. All of my memories then are tied up with Ash.  He plays an important part in each of them either just the two of us or, later, with Jake but, as I said to a friend recently, all of his memories are tied up with work and his job, seemingly not with us at all and I couldn't quite work out how I felt about that.  That was until we...

Sometimes you really have to look hard for a solution to your difficulty but there is almost always one to be found if you search long enough. A friend of mine listens to podcasts on a regular basis and frequently recommends discoveries that she thinks will interest me and, because she knows me well, she's always right.  I listen to a particular recommendation and that leads me onto another and another all of which look as though they'll be fascinating so I download them and then I'm stuck.  When am I going to listen to them? I've got myself back on the treadmill which means I can listen to one every morning that I'm not doing a real live walk with friends but then what?  I'm no use at just sitting and listening so I've taken to putting ear buds in while gardening and that's worked really well but I'm a fair weather gardener and winter's on its ways I do know that this is what Jake calls a 'first world problem' and that there are far wors...

 Had a lovely morning rambling through the woods with a friend followed by a coffee or two and a chat.  Got home with plans for a steady afternoon involving the buying of pork pies, dog food and veg for the week.  Had lunch and waited for Ash to get back from his walk with Max and then we'd be off, only it wasn't to be. The door opened and in flew Ash announcing that he'd decided to go out again and walk through the wood at the end of the village just because he hasn't been down there for ages.  For the exact reason that he hasn't been down there for ages my stomach flipped and my heart sank.  A while ago I persuaded him that Max couldn't walk any further than the end of the lane and for months I've relaxed in the knowledge that twice a day the two of them walk to the top of the same hill, turn round and come home again.  There's little scope for getting lost and everyone knows that's his route so I don't have to worry. I tried to tempt him with ...

 This morning was a perfect example of the rollercoaster that is life affected by dementia.  For a while now Ash has been very happy at the thought of L coming and this morning was no different - to begin with.  I'd judged his mood, told him about an hour before she was due to arrive that it was her day and he immediately said he'd need some money for the cup of tea they'd have when they went out.  He also found some photos he thought she'd like to see and all seemed well with the world.  Fifteen minutes later he was writing it in his diary and his notebook and adding it to the calendar on his laptop, none of which is a good sign.  Suddenly I was walking on eggshells and that's one of the hardest parts of this new life.  We've been together 45 years now and, until dementia came calling, I've never had to worry about Ash's reaction to anything.  He was always so calm, so chilled and so happy with whatever I wanted to do that this new man I now shar...