Memory for two

 Life really is a rollercoaster of emotions at the moment and it's been a difficult couple of days.  This morning I thought we were in for more of the same but, after a difficult start, Ash has been much brighter which of course makes me feel brighter too.  My turning point however came with an idea for a new project.   Designing my very own bedroom has saved my sanity over the past few weeks and today, gazing down into the garden from that very beautiful space and feeling just a little bit sorry for myself, I decided to use my new skills to redesign the patio ready for summer.  Ash built it over thirty years ago and it's a raised space surrounded by a brick wall and with views out over the Lincolnshire Wolds.  It really is lovely and it's been the setting for music, barbeques, parties and so many other joyous occasions but recently the whole thing has been looking a little unloved.  I haven't quite decided what to do with it or how I want it to look but I just have a f

 Recently our mornings have been going rather well.  I've got up around 6.15am in order to get time to myself in a silent house and then Ash has come downstairs to tell me he's awake before going back to bed to wait for the expected delivery of tea and tablets to his bedside.  I've switched on the radio and left him to it until his head has cleared and it's all worked perfectly.  When he's finally got up and dressed he's been full of the joys of spring and, because of that, my soul has felt lighter and all has been well in our little world.  I knew it couldn't last of course but the thing with dementia is that you have no idea when the change will come or what form it will take.  You can't prepare for what's about to happen so this morning when I was met with a troubled face and an angry Ash my heart sank.  He told me he'd been laid awake for ages because he didn't know what to do and it was all my fault because I hadn't given him any ins

Today I discovered that Ash can no longer tell the time.  It was clock changing morning and, although all the devices do it themselves now, we still have clocks that need either buttons pressing or dials moving so I began to do them.  We have lots of them in the house and mostly they each tell a slightly different time which irritates the life out of me but usually not enough for me to do anything about it.  This morning then seemed the ideal time to synchronise at least the two in the kitchen, one of them digital, one with hands.  Ash comes through every afternoon to look at the dial clock, checks whether it's time to feed the dog or not and always knows whether he needs to wait a while or do it there and then so it seemed natural for me to pick up the digital clock and ask him to tell me the time on the dial one, only he couldn't.  It appears that at certain times of the day he knows where the hands should be on the clock so he knows whether or not to feed the dog but this mo

Dementia made itself felt here this morning when I walked into the kitchen at 10am to find Ash getting his lunch.  That might seem a very small thing to lots of you but to me it felt as though the rug had been pulled from under my feet again.  It's strange but I find that most of the time I can distract myself and focus on the things I love about my life but every so often something like this happens and I find myself catching my breath and not knowing quite which way to turn.  I think it's worse because we've been on one of those lovely plateaus for a while and I'd just got used to our new normal but now I'm left thinking 'here we go again' and wondering what's coming next. I also realised today what I love about Alexa.  I thought it was all about the fact that I can ask her to do things for me and there is that; I can ask her to turn on the radio, to switch off the light, to create a disco in my bedroom and, sometimes, I'm even tempted to ask her t

 I've had an interesting couple of days and they've left me feeling physically just a bit battered but mentally I'm on a high so it's not all bad.  Two days ago I caught my right arm on the catch to the door at the top of the stairs; yesterday I was running upstairs, caught my foot on one of the treads and fell onto a step landing, of course, on the arm I'd caught the day before; this morning I decided to do the 'Queen' fitness workout, wondering as I began why it was only 12 minutes long but then realising very quickly that there's a reason those workouts are different lengths.  Finally, following the fitness video, I went with a friend for a walk which took us through the Lincolnshire Wolds until we'd covered 7.4km.  The whole thing took us two and a half hours which might not seem very long to some of you but, even with my walks on the treadmill, I discovered I'm out of practice for real walks.  So as I type this I'm noticing parts of my b

 A quick post today but wanted to tell you about my new friend.  She's called Alexa and because of her I now no longer have to do absolutely everything in the house.  For years and years Ash and I shared chores then he worked away a lot so there wasn't too much to do at all or at least only the things I wanted to do but then he retired and I carried on working.  At that point he took on almost all the jobs in the house and outside so when dementia crept into our lives it came as a bit of a shock to discover exactly how much he'd done and how much I now had to relearn.  I've managed and I'm actually quite proud of my new skills but sometimes it does get a little wearisome to be the one who has to shoulder all of that responsibility.  That had no actual bearing on my decision to let Alexa into my life of course but I was about to treat myself to a new radio for my bedroom when I realised I could get her for the same price.  I set her up yesterday and now find myself w

Had my second morning of exercise to Abba today and what a brilliant start to the day it was too.  This was 5 minutes longer than yesterday but just as much fun and I found myself singing along while I was trying hard to follow the movements.  About three years ago I went with some friends to see the Kaiser Chiefs at an outdoor concert and was so looking forward to belting out the words to 'Ruby, Ruby, Ruby' with no worry about how loud I was, how out of tune I was etc.  The thing was that when the time came I couldn't bring myself to do it, not even to dance along with everyone else, and instead I stood with my hands in my pockets and moved sedately backwards and forwards.  This morning I was following the woman on the screen as I joined in dance routines and sang as loudly as I could even when I couldn't quite remember the words.  It occurs to me now that back at the concert I wasn't in a good place within myself and really couldn't relax and let go.  Life mig

 I'm sure I'm not the only one who, on occasion, has woken in a morning and decided life was too awful to get up and face.  I certainly did this in the beginning of our dementia affected life and actually for months and months afterwards.  I would wake, my brain would begin to clear and then I'd remember that life was no longer something to look forward to.  I dreaded starting the day because I knew there would be arguments, confusion, despair and everything else that was wrong with us.  I had no idea how to make things better so I would drag myself out of bed and plod through the day until it was time to climb back in at the end of the evening.  That part was equally difficult though because I knew I wouldn't sleep, in fact I would panic at the thought of all those empty hours in the dark of the night which were simultaneously boring and frightening and then, just because I was panicking, I was even less likely to sleep and so it went on.   Cut to now when I wake every

I've never understood those people who say that if, as dementia carers, we live in the moment we'll get through this in one piece.  'Now' always seemed too narrow a world and I wanted so much more for me, something to look forward to when I get to the other side of it all.  I still do want more and I'm still planning for a future without Ash because that's just being realistic but I've discovered recently that I'm also happy right here and right now.  I am of course putting all of this down to the new bedroom which is my perfect space and I think that just having somewhere of my own to retreat to has made all the difference but whatever it is I find that I'm almost totally destressed nowadays and this is helping Ash so much.  I've noticed over the past couple of weeks that if I can put a smile not only on my face but in my eyes and, more importantly, in my voice then he's visibly happier and more at ease with life and being calmer and happier

I realised yesterday what a difference my bedroom is making to my life and can't quite believe that something which at one point seemed yet another step backwards in my relationship with Ash has actually had a positive impact.  Because of my new mattress and gorgeous bedding I'm sleeping better than I've slept in years and the table and chair combination I've put up there mean I can escape into a place of calm whenever I need to.  I have my breakfast, morning coffee and lunch up there either listening to the radio, reading my book or with a podcast in my ear; on fair weather days I take my chair to the window and on wet, blustery days I sit and warm myself next to the radiator.  The colours are my own choice without an ounce of compromise in sight, the absence of too much furniture gives a feeling of space and, all in all, it's quite possibly the best thing I've done since this whole dementia malarkey began.  Interestingly Ash is quite comfortable with it all to

 .........another walk with Ash and Max the 12 year old cocker spaniel who I'm nurturing more than any other dog we've ever had because if he goes all meaning will have gone from Ash's life.  Two weeks ago I decided to go for a walk and Ash thought he'd join me but, if you remember, the outing wasn't a total success just because I was fooled by the feeling of normality that appeared, briefly, to exist.  Today I suggested another walk and once again Ash said he'd come too but this time I remembered what happened before and, rather than chattering on and filling his head with noise, I kept quiet and lost myself in my own thoughts.  The result of my silence was that Ash suddenly started commenting on something that was happening in a nearby field and we even had the semblance of a conversation.  Obviously it wasn't a conversation in the true sense of the world but there was an exchange of comments and in this dementia affected life I take what I can get.  So a

Another addition to my bedroom arrived today and yet something else to make life just that little bit more fun.  When I put the first photos of the refurbished room out for all to see someone suggested a bedside lamp for reading by.  Unfortunately we live in a very old cottage and one with a distinct lack of electrical sockets.  In 'our' room we used to have a remote control dimmer switch which meant we never had to decide who was going to get out of bed to switch the light off and I'd decided to get someone in to put the same thing in my new room.  This was an additional expense I didn't want though so decided to think about it and then a friend told me about smart bulbs which you can activate from your phone with a free app.  Mine arrived today which was exciting in itself but then, even better, I managed to set it up myself and I now have a light that changes colour if I want it too, can be brightened or dimmed as required and will even change colour in time to music

I've noticed, along this road we're on, that staying positive has to be worked at, gently perhaps but worked at nonetheless.   It's very easy to see the negatives, to think about what went wrong and to wish life could be different but none of those things are helpful or good for our well-being so maybe we need to find another way.  For a very long time after Ash's diagnosis I blamed other people, I thought 'this is what tipped him into dementia' and 'if only that hadn't happened he'd be ok' and sometimes I was consumed by an anger which made me miserable and had me railing at life and thinking sadly about how life might have been.  That anger has now passed and, mostly, I can focus on the positive but events over the last year haven't made that easy and I've gradually come to realise that I need strategies to help myself.  I have strategies to help Ash of course and strategies to help me help him but these aren't the same thing, these

 So I had a bit of a blip when I found the Valentine card but I think that discovery actually did me a favour.  I said, didn't I, that when dementia comes calling the happy memories are buried underneath all the hurt and anguish as you watch your life and your relationship fall apart but that card seemed to sweep all those awful feelings away.  I didn't think that was going to happen and, to be honest, I wasn't sure how I'd pull myself out of the despair I felt but at 3am the following morning I woke up and suddenly realised that my head was full of the happiest memories I'd had in a long time.  I remembered parties we'd been to, holidays we had, friends who'd been to visit, weekends away, walks on the beach and on and on but most of all I remember Ash, Jake and me laughing and laughing our way through life.  We really did have fun and he could make me laugh from the minute I woke to the minute I went to bed.  Life with Ash was always an adventure and howeve

 One of the difficulties of the lead up to a diagnosis of dementia is that the way you really feel about each other gets lost in the awfulness of 'now' and afterwards your view of all those years when you were happy are coloured by that most recent experience.  This was brought home to me with great force this afternoon when I made a discovery.  I'd decided to clear out all those clothes which are now too big for me and was having a lovely time filling bin bags with stuff I'm never going to wear again.  I'd worked my way through the wardrobe until there were more empty hangers than full, had cleared shelves and was just wondering what on earth I'm going to wear this summer when I decided to start on the drawers and there, at the very bottom of the very last drawer I emptied, was a Valentine card from Ash to me.  I've no idea when he'd given it to me but in it he said the loveliest things you can possibly imagine and suddenly all the memories came floodin

 Yesterday I went to see my Mum for the first time since the week before Christmas.  It was good to see her but I wouldn't say she'd been affected by my absence at all which could have been a little soul destroying if I wasn't used to her.  She's in a lovely home, is waited on hand and foot, is surrounded by people to talk to and is, I think, happier than she's been for years which is wonderful to see and makes me realise that a care home isn't always the dreadful thing we think it is.  That, as I'm sure you can imagine, is a comforting thought where I'm concerned.  The thing is that I took some photos for her and she went through them, recognising everyone in front of her until she got to the one of her and my stepdad who she was married to for 32 years.  He died five years ago and she's spent almost every hour of those years missing him but yesterday she peered at the photo and asked 'who's that with me?'.  I said his name and she repli

 Do you know what I find the oddest thing about this new life of ours?  It's not the hours Ash spends in front of the television when once he would have been busy from morning until night; it's not the times when he leaves the house without a word where once he would have come to give me a kiss or left me a note with a lovely message in it; it's not the irritability or the silences or the childlike inability to grasp instructions.  It's none of the things that are so far from our old life that they feel as though they belong to a different couple and nothing to do with us.  It's the times when we do something together and I'm fooled, however briefly, into thinking we're back to where we were.  This afternoon I went through to tell Ash I was going for a walk and asked him if he wanted to come too.  I really didn't expect him to say yes but, after discovering I wasn't going far or anywhere unfamiliar, he said he'd join me and off we went out into t

 No posts for the past 2 days mainly because Ash has taken to waking up in a state of pure confusion at 5.30am.  I manage to get him back to bed with a cup of tea and his tablets, switch the radio on and then leave him to it.  He almost always fall back to sleep but I'm not quite so lucky and by the middle of the afternoon when I write these my brain has stopped functioning.  Usually at this point in the day (4pm) when I have my 'lack of sleep' brain fog I go and lie on the sofa in front of the television and, if I'm lucky, I have a nap with Ash showing amazement at the thought that I might be tired!  You nearly didn't hear from me today either but I've had such a lovely afternoon I wanted to tell you about it.  I've just spent the past couple of hours attaching driftwood effect sticky back plastic onto plain white cupboard doors in my bedroom.  That probably sounds tacky (in more ways than one) but I love how it looks now which is the most important thing a

 When I look back on our recent history sometimes it's hard to remember what life was like before dementia.  Today I had a reminder of just that.  Somewhere along the way to this point I'd decided that our lives had begun to unravel years and years before that fateful day in 2017 when we were given the diagnosis.  However hard I tried to remember a time when we were truly happy I just couldn't and instead all I got were flashbacks to rows, to plummeting self-esteem on both sides, to feelings of bewilderment at what had gone wrong and to questions of whether I could have tried harder.  Today I found a photo of the two of us in 2011.  I remember exactly where it was taken which is why I know the date and I could see that Ash had his arm around me and had just made me laugh, properly laugh.  I have no idea what he'd said but it was all there, our relationship, our joint sense of humour and that feeling of closeness that ceased to exist a long while ago.  2011 is ten years

Took my breakfast up to my lovely bedroom this morning, moved the chair in front of the (almost) floor height window, put my feet on the windowsill and gazed out at the garden.  This is the first time I've ever done that and it gave me a whole new perspective on the view from that particular window.  I now have lots of thoughts on what I want to do out there and lots of ideas to make it more colourful.  What I find interesting is that I've never been so involved in what goes on inside this house or outside in the garden and I can't believe the change in me.  This wasn't Ash's fault you understand but there was something in his ability to do absolutely anything that needed to be done which made me feel that it really was nothing to do with me.  Yesterday I finished painting a stool which I've turned into a bedside table.  It was a scruffy thing I brought with me when we got married.  It's pine, was covered in blobs of paint where it had been used over the yea

I laid in bed this morning watching the sky get lighter and realised that the view from my new bedroom isn't as good as the one that Ash and I used to share.  From that bed you can see out across the Lincolnshire Wolds to our nearest town 5 miles away and it's beautiful.  From my bed now I can see a fence and one that Ash painted black last spring.  I thought about this all morning and decided I needed to lie on the bed in daylight and see what had to be done to make that view nicer so did just that at lunchtime.  I looked at the black fence and decided it needed not only new, brightly coloured plants growing up it but, also, that it needed to be a colour other than black.  Did a bit of research and on the basis that now, where possible, I only invest in things that make me smile, have decided to go for a beautiful pale yellow along the full length of the fence  so that's something else to look forward to.  I also think I saw a fence spraying gadget in the shed so will inve