Memory for two

This morning I'd been invited along to meet the board of the Lincolnshire NHS Foundation Trust and tell them of our experiences on this journey through dementia.  Some of my friends, when I'd told them about the invitation, had asked whether I thought the board were quite ready to hear what I had to say and the reaction certainly told me that it wasn't what they expected.  In fact the Chair of the board said that it wasn't often they were stunned into silence but my tale of an almost complete absence of support had done just that.  They were all lovely, asked good questions and said they would be in touch about a way forward not just for us but for others in our situation so that was all excellent and hopefully will bring about changes in the system.  They also asked me if I'd mind being filmed for a short retelling of the tale.  I said I didn't mind on condition I never had to see the film so fingers crossed I don't.  The thing that took me by surprise abou

It just depends on where you live and what doctors surgery you use.  Yesterday's post was partly prompted by my search for an Admiral Nurse.  These are nurses specialising in dementia and funded by the charity DementiaUk.  I'm not sure we really need one yet but I had heard they existed in certain parts of the country (post code lottery of course) and that their purpose in life is to support the whole family of someone living with dementia.  According to my investigations, mainly on the DementiaUK website itself, the only ones in this county were specifically to support families of people in Order of St John's care homes so I gave up and didn't look any further.  Last night I was contacted by someone who told me that they did come into this area and she sent me a link so that I could get in touch with them.  The thing was that she knew about them because her surgery had told her.  This is a surgery that we could use if we wanted to (we have a choice of three) and they n

My new Twitter life is, I'm finding, providing a new dimension to the every day.  Not sure I'm quite there with it all yet and sometimes I feel bombarded with information but the nice thing is that, as far as dementia is concerned, almost all of the messages are positive which makes a change in my experience from most areas of social media (eg.  Guess what happened to me today?  You think that's bad, wait until you hear what I went through etc etc).  Anyway I've begun to put snapshots of my thinking on there and one in particular I wanted to share with you.  As the quote suggests, with the right support we can make a difference on this journey through dementia but my take on it is that it must be the right support and it needs to come from all sides.  If we can give the right support to our loved ones then we can make things so much better for them (and for us too) but for us to be able to do that we need support ourselves and not just support from friends but on-the-gr

Now I've joined twitter I've discovered there's a whole new world of positive attitudes towards dementia out there which is a great relief after my experiences with the many different forums I've joined over the past two years but people still obviously have different attitudes and different beliefs.  Yesterday someone asked us all to retweet if we believed that the feeling of love was never lost even when the memory of it has gone.  I read and reread that statement and in the end I couldn't bring myself to retweet because you see I don't believe it.  We're frequently told that the feelings of love a person with dementia has had will always be felt if not remembered and the essence of the old them still exists in the very depths of their being but we're also told that each case of dementia is entirely different to the next so how can we say these things are true for everyone.  As far as I can see the Ash I fell in love with over forty years ago, the Ash

Bad night last night and absolutely nothing to do with dementia just one of those nights where my body wanted to sleep but my brain wanted to party.  I tried all my usual strategies such as remembering holidays gone by, redesigning the house, redesigning other people's houses, going downstairs for a while, reading, listening to the radio but nothing seemed to work.  I finally dropped off around 4 am only to be woken three hours later by Ash jiffling around doing his best not to wake me but hoping against hope that I would so that he could check details of the day ahead.  One of the things I really, really miss about our old life is being able to lie in and make up for lost night time sleep but it's no longer an option so up I got, made the tea then snuggled back down under the warm duvet.  The difficulty there though is to avoid falling back to sleep as, if I do that, then Ash gets doubly anxious and doesn't know quite what to do.  It's another of those instances where

I may have given up work and I may think my life isn't as exciting as it once was but looking back over this last week I'm certainly avoiding being bored.  Monday saw me walking with a friend when we went from the front door, across the fields to the next village and then back via a green lane I haven't used before.  We were out in the sunshine for two hours and followed it up with a coffee when we got back; Tuesday saw another walk with another friend this time out for over two hours covering yet another area of the Lincolnshire Wolds and this time discovering a small hamlet at the end of a dead-end lane that I'd always wondered about but never visited.  Very little sunshine this time but still amazing views and wonderful buildings that we could look up when we went for coffee afterwards; Wednesday involved a trip to my mum's where I unearthed a photo of Ash and me I'd forgotten all about.  There was no reaction when I showed it to him which wasn't quite wh

No post yesterday as really hectic as well as exhausting.  Difficult start involving a doctors appointment which always causes, at a minimum, a small amount of stress just because we're out of routine.  Got that sorted and then I was off to Mum's house to see about some work that needed doing.  While I was there I found a lovely photo of Ash and me taken about twenty years ago. We looked young, happy and smiley so was obviously way before dementia entered our lives.  I put it in my bag and showed it to Ash when I got home forgetting as usual that excitement and/or enthusiasm are not a great idea in this house nowadays.  He gave me a completely blank look neither responding to the photo or even recognising the people in it so that was a bit of a downer.  He perked up when I suggested fish and chips for tea so we lit the fire and off I went for the 10 mile round trip.  Got there to find myself at the end of a very long queue but stuck it out because I'd made the effort and th

An amazing thing happened this morning.  Yesterday I wrote about the things that happen in our lives which irritate me and how, by making changes, I've reduced the list to two.  This morning I woke to find that as I said 'good morning' I was waiting with a smile to see if Ash replied with his usual 'what?'.  He did and it made me smile even more.  I wasn't laughing at him you understand but just accepting what was happening and that acceptance made all the difference.  He isn't doing it because he's in a mood, he isn't doing it because he's cross, it's just part of who he is now and as a friend pointed out it may be that he's in his own world and hasn't properly heard me.  I'm very sure that Ash's first thoughts in a morning are more likely to be 'what day is it?', 'what am I supposed to do next?' or even 'where exactly am I?' rather than 'Jane's going to say good morning in a minute and I need

Didn't I tell you that today would be better!!  The sun is shining, a two hour walk in the fresh air has cleared my head and I'm ready to face the world again.  I've also been thinking about the little irritations dementia is causing in my life.  These are what Jake calls 'first world problems', they're not important, not earth shattering, not at the top of anyone's list of concerns but they are irritating none the less.  It used to be a long list and they used to bother me a lot however I've just sat down to write about them all and discovered that I could only think of two which is amazing and tells you all you need to know about the level of acceptance that exists on my part.  What used to be an irritation has apparently ceased to be one and I wondered why this was then I realised it's mainly because I've found solutions to the vast majority of them.  Watching the same programmes every evening?  Buy noise cancelling head phones, sort out the i

Been to see my mum today and had the usual conversation. Mum:     Is Ashley any better? Me:        No mum. Mum:    Will he get better? Me:        No mum. Mum:    Well at least you've still got him. Me:        No, I've got someone who looks like him and sounds like him but it's               not him. Silence Mum:    Is Ashley any better? Me:       No. Mum:    Well at least you've still got him!!!!! This is one of my least favourite conversations with the exclamation marks and screaming going on in my head because at that point I always come to the realisation that we're not going to get any further and I wonder why I haven't just said 'yes' in answer to the first question.  The conversation also made me think of the other reply, usually equally silent in my head, which is the answer to the comment 'hopefully you've  still got years and years ahead of you'.  Sometimes I'm comfortable enough to give a considered reply but often

I sleep far better nowadays than I have in the past but still sometimes struggle to get off or wake in the early hours and can't find my way back into that comforting darkness so what do I do?  I've said before that we've been on some amazing holidays and I find one of the things that works for me is to take thoughts back there and relive the best ones.  There is a drawback in that it makes me remember how things used to be but, as the saying goes, 'it's ok to look back at the past, just don't stare' so looking back is what I did last night.  One of my favourite holidays was to Comino which is a rock in the Mediterranean between Malta and Gozo.  To get there we flew to Malta, took a minibus to the top of the island and then clambered into a fishing boat to take us the rest of the way.  This wasn't an expensive or an exclusive holiday just one I'd found in a brochure and liked the look of so I booked it and off the three of us went.  Comino really is

My brain is in a fog today.  On one of the few days when I had to be somewhere at a specific time I overslept which for me has a similar affect to not sleeping at all.  On top of that just before lunch I sat down to complete some forms for the local council regarding funding for mum's care home and didn't understand a word I was reading.  This isn't unusual when reading something from the council but it all seemed to make even less sense than normal so I phoned them.  Good job I did as it appears there'd been a mistake in their calculations and that all my recent sleepless nights had been somewhat unnecessary.  Three or four phone calls later and I think it may be sorted although I won't breathe easily until I have their promises in writing however what really floored me was Ash listening into the phone calls and then saying 'I hope I go into a home before you as I'd never be able to figure this all out'.  Those of you sharing (or having shared) a life w

Today began with bleak feelings and dark thoughts.  Those of loss, frustration, despair and resignation not helped by waking at 4am and being unable to get back to sleep.  I never function well on too little sleep and these mornings always seem to be the ones where Ash is struggling more than normal.  I'm sure then that the problem lies with me; I'm battling tiredness so am short tempered which in turn makes life difficult for him and so we go on in ever decreasing/depressing circles.  The one thing I do know now though is that these feelings won't last and they didn't.  By the time we got home from shopping I was feeling much better and when he came through to say he couldn't remember where all the groceries went it was actually a relief.  This is the latest of the changes in our situation.  Ash used to do all the shopping; then he drew up the list and we went together; then he drew up some of the list but we still went together; then I drew up the list, we still w

Last night we had a conversation about some wooden pallets which have been leaning against the side of the house for years.  Ash had completely forgotten about them but suddenly announced that he was going to take the chainsaw to them in order to create sticks for the fire.  The very thought of him with a chainsaw made me go cold but if I've learned one thing over the past two years it's not to argue with him or suggest something isn't a good idea unless I absolutely have to so I kept quiet and let the subject drop.  This morning neither the pallets or the chainsaw were mentioned so I breathed a quiet sigh of relief and relaxed.  I really should have known better.  Mid morning the announcement comes that he's taking the dog for a walk and then plans to come back and get the chainsaw out.  All the time he was out of the house I was in a quandary.  Should I let him get on with it or should I put my foot down and risk an almighty row?  In the end I took the coward's wa

In my previous life I rarely despaired and if I did Ash was always there to help me up.  Now, although it happens far less frequently than it did in the beginning, I do occasionally find myself in the depths but have only myself to rely on to find a way out.  So, if I'm in despair, what's to do?  Most of my reaction I have to say is instinctive.  I tend to look for the positives and find things to do which interest me and take my mind to another place so yesterday I despaired when I woke and reached for Ash's hand only to find him flinching and pulling away but then I went for a walk with friends and in the face of fresh air and great company the despair vanished to be replaced by delight.  This morning when I woke there was only delight because I knew that my weekly walk with today's friend would take us somewhere new, somewhere we hadn't been before and I couldn't wait to get started.  My lesson here is that when you only have yourself to rely on to find delig

You may have read the saga of the missing washing up liquid, you may remember the details of the disappearing firelighters, you may still be pondering the piles of dish cloths and then there were the bread loaves, saucepan lids and numerous other items which disappeared either never to be seen or again or to come to light in an unexpected place somewhere in the house but now it's the turn of the milk and with it comes the feeling once again of the earth shifting beneath my feet. Yesterday I'd planned quiche for tea but realised that it would possibly use up all the milk we had left so I went out to the shed where I was sure Ash had put a carton when we got back from shopping last Thursday.   That milk was however nowhere to be seen, not in the usual shed or either of the alternatives even though I searched high and low so, feeling that perhaps I was mistaken (but who knows), off I went to buy more.  By the time I got home the carton which had been opened and which I'd lef

I met someone last week who's in a similar situation to me but further down the line as her husband is now in a care home.  We chatted for quite a while with me asking lots and lots of questions and then completely out of the blue she said 'and of course all our friends have disappeared'.  It was the 'of course' that threw me as we haven't lost a single one, not only that but friends we haven't seen for a while have come back into our lives offering their support and, as you'll know if you read yesterday's post, we've even gained some brand new friends.   So why have our friends been so amazing?  I'n fairly sure they aren't the only nice people in the world but they're with us all the way where it seems in other lives friends have fallen by the wayside.  I've thought about this ever since that conversation and I realised I've written about it before, in fact a whole year ago.  You may have already read the post and remember it

Something happened at Christmas that took me completely by surprise.  We have new friends who we've known for about a year and we went out for lunch with them.  We had a lovely day but Ash, as usual, was a pale imitation of his old self.  He did however join in, he laughed quite a lot and he looked as though he was enjoying himself.  When we got home I messaged to say what a lovely time we'd had and how much I wished they'd known the old Ash, the one I shared my life with before dementia joined us.  The reply which came swiftly was 'but we love this Ash' and that took me completely by surprise.  I have to admit to being disappointed in this new man in my life.  He doesn't make me laugh from morning to night, he doesn't make me feel good about myself, he hates adventures, he can't cope with surprises; the list could go on and on but the difficulty I now realise is that I continually use the old Ash as a benchmark to measure the new one.  New friends don&

I have read the book 'Contented Dementia' by Oliver James twice and the things I've learnt from the book have saved my sanity on a number of occasions.  Each time I've read it we've been at a different stage of this 'journey' and each time I've learnt something new but yesterday I had my first light bulb moment for a while.  For the true explanation of this you will need to read the book but as I've understood it Penny Garner tells us that each of our life experiences are recorded as a photograph in our brain and when we need a reference for a new experience, we delve into the 'photograph album' which we hold in our heads.  She goes on to say 'Dementia introduces an entirely new type of photograph in which the facts of what has just occurred are not stored although the feelings associated with the missing facts are stored'.  Eventually feelings become very much more important than facts for the person with dementia and they use those

Neither of us could get to sleep last night, a circumstance I can blame almost entirely on the cough Ash has had since before Christmas.  The cough which may or may not be down to his blood pressure meds but which the doctor, without seeing him, put down to being the same cough everyone around here seems to have at the moment.  Anyway whatever the cause it prevented both of us from falling asleep so, as hot drinks seem to be the only thing which bring it to a halt, I offered to go down and make one, an offer instantly accepted.  The problem was that by the time I got back upstairs with it Ash had completely forgotten why he wanted it in the first place and fell asleep without drinking it while I lay at the side of him wide awake.  He then woke up 15 minutes later coughing so drank the now almost cold tea before falling back to sleep snoring loudly.  Two hours later I finally fell asleep but woke up late with a blinding headache and a cross Ash who informed me he'd been awake for an

............ yesterday improved.  Ash was still struggling when I left the house and I really did consider staying at home but, working on the principle that he's much better off if I'm relaxed and happy, I continued out of the door.  Six miles and 2.5 hours later (my walking mate has an app on her phone which tells us this stuff) we'd walked yet another part of our local area which was new to us, put the world to rights on several subjects and managed to get me to the point where my smile was back in place and I was ready to face everything again.  Two more friends came round yesterday afternoon so yet another set of subjects covered and once more all was right in my world.  We hear an awful lot about taking time for ourselves, making sure we have respite from our ever narrowing world and not getting bogged down with the day to day stuff and yesterday showed just how true this is however I know that I'm lucky that I can still get out, that I can still leave Ash for a f

The last few days have been lovely.  We've both been relaxed, I've tried out some new recipes, we've watched a couple of tv programmes together with no mention of Pointless or The Chase, Ash has been close to his old smiling self and, stupidly, I'd begun to relax.  Then, as usually happens when I relax and think the whole thing is under control, WHAM it all goes pear shaped.  Ash woke up coughing at 4am so, as I was already awake,    I offered to go and make a cup of tea.  Working on the principle that he always has his tablets with the first cup of tea I took those up too and all was well.  As on every other morning, albeit slightly earlier than normal, the radio went on, the curtains were opened so we could watch the sunrise and still all was well, then I made the mistake of falling back to sleep.  Woke to Ash in the middle of a panic attack - 'I don't know what's happening, what we're doing or anything' is all said in an accusing voice and I'm

Ok folks, I now have a Twitter account (just search for Memory For Two )   and, as I'm not very good at this sort of thing, I need your help to spread the word.  This blog has been amazing at helping to clear my brain and I love having a topic spring into my mind and then be able to write about it but there have also been times when some little thing has happened in a day and either it hasn't fitted anywhere into the blog or it's got lost along the way as other events have overtaken it so I thought twitter might be the place for those small moments.  Still finding my way round it all but, as I drag myself into the second decade of the 21st Century, I think I'm ready to learn.  There are other exciting opportunities to come which I'll tell you about some other time but I can tell you I have a feeling that, circumstances aside, this could be a good year all round. Oh, and as for the changes I made to our bedroom they really did the trick (and NO not in that way - th

This morning a question from a friend and a throwaway remark in my reply made me think about our bedroom.  I've talked about this before and if you're living a life affected by dementia you probably won't be surprised to hear that sex doesn't feature very highly in our lives nowadays.  In fact I can say with great certainty that it won't feature at all in any shape or form ever again but I realised this morning that because I was feeling unloved so I'd fallen out of love with our bedroom.  Instead of being a place we escaped to it had become a reminder, to me at least, of what's missing in our lives and I'd begun to ignore it.  As a result the surfaces were covered in dust, the corners were filled with unwanted items and the whole place was just depressing so this afternoon I've set to, cleaned it from top to bottom, ordered new plump pillows and am about to order new bedding.  There are fairy lights strung everywhere and it's starting to look a

In all the years we've been together Ash had made me feel good about myself.  He's supported me through difficult times, he's praised me when I've got something right, he's told me when he's been proud of me and, whatever my shape or size, he's made it clear he's loved my body.  All of that is now at an end and sometimes it makes me sad however I recently realised that there is one big advantage to him taking no notice of me.  For several years I've had a problem with my scalp.   You don't need all the gory details but suffice to say it was sore and nothing I tried cured the problem.  Then someone suggested coconut oil rubbed into my scalp before I went to bed.  Now in the past, when Ash noticed everything about me, this would really have been opening myself up to ridicule.  The thought of him in hysterics at my greasy hair as I got into bed would have driven me crazy as would his remarks about the aroma.  This wouldn't have been meant nastil

You may have noticed the lack of a blog post yesterday and that's because my day went into freefall mid morning.  Plans had included a leisurely hair cut for both of us followed by a leisurely coffee followed by a leisurely drive over to see my mum.  Instead, although we managed the leisurely visit to the hairdressers, the rest of the day consisted of a mad drive over to my mum's house to sort something out before a house viewing then a mad dash to visit mum before driving home in the dark, cooking tea and collapsing in front of the tv.  As you can see, no time for a blog post.  Today is almost as bad but there are chunks of calm hence this report while I have a gap.  We began with the weekly grocery shop but it's Friday not Thursday so Ash didn't cope well.  I stayed calm but I won't lie, it was a bit of a struggle.  Got home and phoned the surgery regarding a cough that began when Ash was given tablets to lower his blood pressure but has got gradually worse and no

So it's New Years Day and for the first time ever I'm looking towards the next twelve months as a whole package.  This sense of looking towards the future may have come about because, also for the first time ever, I'm not thinking about going back to work.  Please don't misunderstand me, I loved my job.  It wasn't stressful, I worked with wonderful and supportive people and I got to do something different every single day but it was always there .  There were meetings to arrange, people to see, projects to plan for and, even when I was down to 4 hours a week, it hung in the background.  Now I'm at the point where I really have no room in my head for anything other than 'us' and I finally find I have the time to focus, to work things out and to look forward rather than back.  None of this stopped me waking up this morning with the sick feeling in my stomach which dementia brings on a daily basis you understand but I have a feeling that I can cope with wha