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Showing posts from July, 2019

Some people should know better

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At the beginning of the year, after a long battle, our GP surgery finally managed to get a message about Ash's dementia to flash up on their computer screens when his name was put into the system  This action had been promised and promised but somehow had taken 14 months to achieve.  They also put a message onto his notes that all appointments were to be made through me.  You'd think that would be common sense when dealing with dementia and he had signed the consent form but even now, and with that message, admin staff still phone asking to speak to Ash and then make a big show of checking the notes when I suggest talking to me.  So, anyway, two weeks ago he was called to the surgery with regards to his blood pressure.  We saw a lovely GP who was very helpful but something about her questions prompted me to ask if a message had flashed up on her screen regarding Ash's dementia.  It appeared that it hadn't so she immediately emailed the practice manager to get the syste…

Moving on slowly and carefully

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Things are better you might be pleased to know.  There are still lots of ups and downs but I think we're not on our own with that and at least the ups last longer than the downs.  Over the past few days Ash has been so much more like his old self that I have to be careful not to fall into the usual trap of thinking 'well it was obviously all a mistake and we can go back to how we used to be' which is my default position when things are going well.  I'm trying not to relax too much as I know how quickly things can fall apart but at this moment it all feels pretty good.  We have moved into some sort of rhythm where I try not to race around and where I think first and act second.  I need to tell you now that this doesn't come easily to me, it's not in my nature but I'm getting better.  Have you ever had a time when you've seen a living thing that you want to look at close up and so have made yourself still and moved slowly and carefully so as not to startl…

Is there any wonder my head spins sometimes?

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Ash, first thing this morning: 'it's looking a bit autumnal out there'.

Me, after a trip downstairs to make the tea: 'it doesn't look as autumnal downstairs as it does from up here'.

Ash: 'is it looking autumnal then?'

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Me, when we'd got downstairs: 'don't forget to pick up your prescription this morning'.

Ash: 'it's in the diary'.

Me: 'it was in the diary for Friday but we forgot about it'.

Ash, after getting the diary out:  'Here it is, I've got an appointment for a blood test tomorrow morning'.

Me: 'yes but you've got to pick up your prescription this morning'.

Ash:  'Have I?  It's not in the diary'!!!!!


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life is sooo up and down

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I think I'm in danger of getting motion sickness.  Ever since I drew the line in the sand, with one or two exceptions Ash has generally been quite happy but those exceptions always take me by surprise and so it's been this weekend.  Yesterday was really lovely.  We both went, along with Jake and the five and a half year old, to see my mum in her new home.  This is a major step forward as up to now Ash has always become so anxious at the thought of visiting my mum that I've stopped suggesting it.  Yesterday lots of things combined to make it a viable option - it was pouring with rain so he couldn't get on with anything and would have been sat at home on his own, it was a chance to see the five and a half year old, it was a chance to see Jake (although not quite as high on the list as the little one he does come in a pretty good 2nd) and his level of self confidence seems to have soared after successfully replacing the outside light and putting a new floor down in the lo…

The benefits of sitting on my hands.

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Three days ago Ash announced that the outside light on the side of the house needed replacing.  He searched on-line and found just what he wanted at a large DIY chain in our nearest town so we bought it and I hoped he'd then forget about the whole scheme.  Two days ago he dashed that hope by announcing, about an hour before I was due to meet a friend for coffee, that he was going to replace the light.  As this whole project involved electricity, heights and a tall ladder I arranged for the friend to come to me for that drink and then sat on my hands and kept my mouth tightly closed as he got started.  Well it took a while but at the end of a couple of hours we had a working outside light and an Ash with a new-found confidence.  Today sees him replacing the floor of the log shelter and a request to order shed paint so that he can rejuvenate the summer house, garden fence, trellis and the five and a half year old's play house.  What a good job I managed to sit on my hands and ke…

Life is slightly odd nowadays

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Let me rephrase that slightly.  Life is very odd nowadays.  I was thinking about this earlier and thought I'd share it with you.  I do, I've decided, love being at home so much more especially in this hot weather when, for the first time in approximately 28 years, I'm spending the summer in the garden.  However currently I'm live with someone who looks like my husband and sounds like my husband but who is just a pale imitation (all of which I think I've said before) and I don't feel as though I share my life with him.  I certainly don't share my hopes and dreams because he's really not interested.  We almost share the same sense of humour but not quite.  Where I was always completely sure of being able to make him laugh now sometimes I'll make a comment and he'll say 'what do you mean?' which throws me and makes me feel stupid.  We don't have proper conversations as again he's not really interested and gets lost half way through.…

That'll teach me

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Yesterday morning I started writing a post smugly telling you how relaxed our life had become.  Ash was even tempered and smiling all the time and everything was right in our world.  I went out for a couple of hours coming home to him about to watch the news to see who our new prime minister was going to be and then joining me in my sanctuary when I put the tv on in there and it was all lovely.  He then took me outside to show me what he planned to do in replacing the floor of the log shelter and asked if I wanted to go with him to buy the decking so we were still ok.  However he then discovered that the decking wasn't in stock where he'd planned to buy it.  I suggested a couple of other places and rang them but they didn't have it, we could however order it over the internet so I asked if he wanted to do that and apparently yes he did.  I ordered it and told him it would be with us in four days and that was where it all started to go horribly wrong.  He needed the decking…

On the same page

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Lunch out today with someone I've known a while but not really well and it turns out she knows exactly what I'm going through and that felt quite amazing.  Lunch lasted three and a half hours and we're going to do it again.  It really is true that you never know what's happening in other people's lives, that what you see is only the surface and that everyone has their difficulties.


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Is it a decline or not?

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It's the smallest things that make you notice the decline.  I've mentioned before that Ash used to do the weekly grocery shop then he drew up the list and we shopped together then he drew up part of the list, I finished it and we shopped together, now he thinks he draws up the list but actually I do it and we shop together but occasionally he stays in the car while I shop.  Then there's the mowing.  For years and years Ash mowed the churchyard and church field at the front of the house and took great pride in it looking neat then it all got too much and he did it occasionally then I asked our neighbour to give him a hand then the neighbour was doing more than Ash now he and his wife do all of it while Ash doesn't even notice the change.  Ash used to mow the lawn to within in inch of it's life then I had to remind him, now I remind him but have to ask if he wants me to do it.  Sometimes he says yes to that!  So there are these things and lots of others but the dishw…

The importance of socialising

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We used to go out quite a lot.  Nothing fancy but the village pub on a Friday night was a favourite, parties or meals at friends houses were lovely, local fundraisers whether coffee evenings in the village or balls in the local town where we donned the glad rags and ordered a taxi just so that we could drink the bar dry were fun, hosting BBQs or paella parties in the garden kept Ash busy cooking ....... all of these and other events played a huge part in our lives but gradually, and almost unnoticeably, dwindled until  I found we were spending much of our time at home just the two of us.  I couldn't figure it out at first.  We had been involved in organising many of the fundraisers, we hosted some of them and almost had it down to a fine art.  We knew what food to provide, where to get the band, what to do if it rained, where to place the tables, all of these things had been learnt over the preceding 30 years and I couldn't quite put my finger on the point when it all began to…

Taking pleasure in the small things

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Yesterday I wrote about how the old Ash loved nothing more than being outside as often and for as long as possible whereas the unpredictability of nature now seems to make him anxious.  A comment from a regular reader of the blog says that she too is in a similar position and that, just like us, yesterday was about adventures whereas today is about finding pleasure in the here and now and that is just what I've been doing.  The five and a half year old is coming to stay at the end of August and his bed needed a new mattress (the one he'd been sleeping on was bought for Jake when he was about the same age which means it's 27 years old).  We got rid of the old one and since then have been waiting for me to get around to ordering a new one so the bedroom itself has become a dumping ground.  Anyway the new mattress arrived a couple of days ago and today I put the bedroom back together.  I need you to focus now and picture what I'm about to describe in your mind's eye. …

The great outdoors - then and now

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Having dementia in your life isn't all bad I've decided.  As a result of dementia I am spending a summer in the garden for the first time in 28 years which is definitely a plus.  On top of that there are regular days out with friends, catch-ups with other friends for coffee or lunch and a general feeling, when things are going well at least, of relaxation and well-being.  However some things don't feel quite right.  People will tell you that the essence of your loved one is still there and that you just have to look a little harder for it but yesterday when a friend asked whether Ash still walked around in bare feet I had to say no and that's when I realised he really is disappearing in front of my eyes.  Once upon a time he was renowned for this and from March to October it was with a sense of pride that if he wasn't working he would be in shorts and bare feet regardless of the weather.  We have been turned away from Windsor Castle due to the lack of footwear, ask…

Use your moments of happiness wisely

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I'd never heard the term 'anticipatory grief' until, just after Ash's diagnosis, I mentioned to a friend that I couldn't stop crying and she suggested this is what I was experiencing.  The knowledge that you've lost someone so important to you but, strangely, you are still sharing your life with them means that it's very difficult to grieve in the 'normal' way especially as the person you know and love still appears from time to time (although less and less frequently as time goes on).  You probably already know all about this and, if you too are in this situation, will certainly have experienced it but I'm still learning.  Yesterday something popped up on fb about anticipatory grief so of course I clicked on it to find out more https://homecareassistance.com/blog/dementia-caregivers-help-overcome-grief?fbclid=IwAR2mGQrLthpSHeNSsyPYWzAbXwiJijdwFHpyEMgMtVBmEwET_w7smMz_9tQ.   One of the things that struck me was that, according to this article, pe…

An exhausting life

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Have you been waiting for this?  Each time you've read about how good life is at the moment have you been thinking 'it can't last'?  Well if your heart just sank I can reassure you that it's still much, much better than it was and I know I should be grateful for that.  However even now I'm so unused to being anything other than happy that I find anything less exhausting to deal with.  This morning's blip was fleeting but still served as a reminder that I should never assume that, having got over one hurdle, there won't be another following close behind.

This morning Ash woke feeling anxious just because he'd convinced himself that yesterday we'd had an argument but had no memory at all of the events of the day.  I have no idea where this came from as there hadn't been even the hint of a disagreement but when I look back I did feel all afternoon that something was 'off' but couldn't quite put my finger on what so told myself I was…

Yet another new skill to add to the list

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I've just read something that made me stop and think.  That something was a quote which said 'An Aries is a master at taking charge' and that was Ash (an Aries to his fingertips).  To outsiders it may have looked as though he did as I told him but it was an illusion and a private joke between us.  I always knew this but it's only as I write about my newly acquired skills that I realise how spoilt I was.  Over the past few years, and certainly since the diagnosis,  I've had to learn to garden, to mow the lawn, to cook, to get fish and chips from the chip shop, to sort out IT problems, to organise log delivery and to plan driving routes.  Today I added to that list washing the dog.  In my defense I'd like you to know that I always helped with washing the dog as he hates it so it's generally taken two of us.  This is quite odd actually as he's a spaniel and loves nothing more than to dive into a stream no matter how deep but having a bath is a completely d…

Could this get boring?

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The peace and tranquility (with the occasional hiccup) continues and we've had yet another lovely weekend.  I did think it was all going to go pear shaped yesterday morning when there was a problem with Ash's computer but he managed to calm down so that we could go and spend the afternoon with Jake and the five and a half year old, an event that is guaranteed to bring a smile to all of our faces, and was still fine when we got home to find the computer problem persisted.  I promised to look at it today and that was all that was needed which was a great improvement on the past few weeks when the highest mountain would have been made out of the smallest mole hill and a crisis out of all proportion would have reared it's ugly head.  So we got through to this morning and I managed to fix the computer problem which not only gave a massive boost to my self esteem but also earned me lots and lots of brownie points so all was well in our world.  On top of that I spent the rest of …

What are friends for?

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You obviously need the right friends but, just in case you were wondering, when you're in difficult situations friends keep you sane.  They listen to your drivel, they sympathise with you (but not too much) and they take your mind off your problems.  They lighten your load, let you know you have support, tell you you're in their thoughts, make sure they're around when you need them and generally make life that little bit better.  I've thought this for a while and have mentioned it on more than one occasion but the last few days have brought the subject to the forefront of my mind again.  On Thursday evening I had to race to A & E (an hour away) because mum had fallen yet again and this time damaged her leg badly.  We got out of the hospital at just gone midnight and I took her straight back to the home (where, to my great relief, I could just hand her over and know she would be looked after) then I went over to her house to sleep away what remained of the night.  Y…

Thinking everyone else is better at this .....?

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I've decided that it's very easy when you read things written by others living a life affected by dementia to think that they have all the answers, that they were instantly accepting of what was happening to them and that they had a handle on it all from the beginning.  I read Wendy Mitchell's book (gave it the wrong name yesterday so you might, if you're looking for it, like to know it's called 'Somebody I Used to Know') and thought just that, then I had another look at the home page of her blog and realised that, just like the rest of us, she'd thought the diagnosis meant the end of life.  Partly, she says, that was because no-one told her any different and I  know that feeling.  You may remember, if you've been with me for a while, that Ash was given his diagnosis then told to wait for a prescription before we were sent home having been told that someone from the clinic would contact us in 12 months for a review.  Nobody told us it was possible t…

What's made the difference?

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We're still on track here and life is still lovely so I've had time to think about what exactly happened during those big discussions we had a couple of weeks ago.  One of the things I did that I think might have made a difference to Ash's view of what's happening to him was to sign him up to receive Wendy Mitchell's blog.  Wendy was diagnosed with Early Onset Dementia at the age of 58 and some of you may remember me raving about her book 'Which Me am I Today?'
She hasn't let her diagnosis get in the way of life but has learnt to accommodate her dementia by making alterations where she needs to and, as a result, travels around the country by train taking part in a variety of events, joining groups for discussions around dementia and speaking on the radio.  She acknowledges that her life has changed and there is much that she is now unable to do but she also focuses on what she can do and how she makes the most of her life now rather than dwelling in the…

Oh what a lovely ........... weekend!

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Last weekend I might have been writing about war in the title of this post but this weekend has been absolutely lovely and I can't stop smiling.  We really do seem to have turned a corner and, although I'm trying hard not to be too optimistic in case it doesn't last, the whole atmosphere in the house has changed.  Ash has been making jokes, smiling, laughing and teasing just like he used to and I'm just hoping we can hold onto it.  Things are obviously not back to normal and they never will be but with laughter back in our lives I feel I can cope with anything else that's thrown at us.  And to finish it all off, last night instead of watching endless episodes of Pointless and The Chase he chose to join me in watching the first ever episode of 'Columbo'.  Now some of you might think that's not much of an improvement on our usual tv viewing but in my book it was a huge step forward.  I'd decided I was going to watch it and gave Ash the option of watch…

What a difference a week makes

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Seven days ago I left the house in turmoil.  Ash had been shouting as usual, I had been crying as usual and it seemed as though we would be living in misery for ever more.  The big discussion two days before had meant I thought we were over the worst but the worst is when you think everything is sorted and then you discover you're right back at the beginning.  Except we weren't (right back at the beginning that is).  This time I hadn't been able to contain myself so I phoned him half an hour into my journey and said it all over again and this time, because we weren't starting right back at the beginning, the words stuck.  I actually made an impression and proved at least to myself that I hadn't been wrong, that somewhere in the midst of the dementia the old Ash still existed which was something I'd begun to doubt.  Now we're a week on and enjoying life again.  There hasn't been a single outburst; he's taking the dog on longer and longer walks; he…

It's all the fault of the shoes!

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You may remember that I'm moving on from black in the shoes department due to the gift of a beautiful pair of black court shoes covered in red poppies and green leaves.  Well they seem to have had more of an effect on me than I thought as today I bought a lime green vest top and a bright blouse to go over the top.  This is so not me but I'm about to put the top on (with black trousers obviously - I haven't changed personality completely) and am almost on my way out of the door to join friends at an Abba night fundraiser for the local school.  Mama Mia here we come!


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Making the most out of life

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This week seems to have been a bit of a social whirl.  Of course it's all relative and against other people's lives it might not seem much but, with the help of friends and family, this week I've been out and about enjoying myself.  Tuesday saw me over at my mum's house meeting the new estate agent (and yes there is a story in there somewhere) and letting the engineer in to remove the stair lift.  I then had around 4 hours of complete peace and quiet before I met up with number 1 son for a meal and a catch up then back to mum's for a night on my own.  This was made possible because a friend in the village offered to call in on Ash to check he was ok and best of all he was happy with this arrangement so I had nothing to worry about while I was away which is a HUGE step forward.  Today it was a trip out with another friend for a day courtesy of the National Trust.  Each of us has a specific difficulty in our lives at the moment and neither of us has any idea how long…

Drawing that line made a difference

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Drawing that line twice in one week seems to have worked.  We've just had a very peaceful few days full of smiles and jokes and so it seems we're back on track.  I have learned not to hold my breath where any of this is concerned but I am optimistic that we've turned a corner and it just shows that sometimes you need to ignore the experts and go with your instincts.  I realise that it would have been completely the wrong thing to do if Ash had been further down the line with his dementia but this was a lesson in how a bully can develop if the conditions are right.  I do think that, as with children, the lack of boundaries made him feel anxious and that his behaviour was all about trying to discover what he could and couldn't do.  Now he knows not only has he relaxed but he is far more accepting of help.  He also seems to have taken on board how upset I was and the nice thing is that I know now deep down he doesn't want that, he wants me to be happy as he always has…

What happened today?

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Every day I look at the number of post views for this blog and they're usually between 50 and 100 which makes me very happy.  Every so often those figures will go higher and usually that's when Kate from YoungdementiaUK has sent out her newsletter (www.youngdementiauk.org).  Once or twice the blog has been quoted elsewhere and the numbers have gone up but mostly they hover between 50 and 100.  So what happened today?  I logged on at 6.30am expecting to see the number 6 or something similar (the number creeps up through the day) and I see 901!!!!  Then I look to see where in the world those people are viewing from and it appears there are 871 of you reading this in Israel.  How exciting but why?  I'd love to know where you found me and how.

Carrying on from all that I looked further at the stats and it appears that from the time I started writing this there have been readers from UK, Israel, US, France, Germany, Croatia, Australia, Belgium. Canada, Sweden, Germany, France, …

A subdued husband

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We seem to have gone from one extreme to the other.  For the past few weeks, as reported, everything I did was wrong; I spent my life treading on eggshells and I longed for a peaceful existence.  Then, as described over the last few days, two huge bust-ups when I decided enough was enough; two discussions (the second mercifully shorter than the first) and I now seem to have a husband who thinks before he speaks and who appears to be considering my feelings at long last.  So is this alright?  Is this what I want?  Well to be perfectly honest no it isn't and I feel bad for wanting more when last week I would have given anything to have what I've got now but it's still not right and it's never going to be because what I really want is my husband back and this quiet thoughtful person just isn't him.  He's certainly nicer than the man I've had in my life for the past few weeks and months but he still isn't my Ash, he's just someone who looks like him and…