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Showing posts from November, 2019

Making life choices

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None of us has the perfect life and the one Ash and I are living at the moment certainly isn't one I would have chosen, neither however is it anywhere near as bad as I feared it was going to be.  I would even go so far as to say that, in most parts, it's better now than it's ever been and that has to be down to the choices I've made over the last two years.  When we were first given the diagnosis I thought it was the end of everything, that we were doomed to living in a twilight world dominated by dementia and the things he was no longer able to do but I can say with great certainty that things haven't turned out that way at all.  I know I have bad days where I feel sorry for myself beyond belief but I've realised fairly recently that once upon a time I chose to hang on to those feelings, hug them tightly and wallow in them.  Recently I've felt myself batting them away whenever they've threatened to engulf me and as a result those days are fast becomin…

I might just be getting the hang of this

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Grocery shopping day today and for some reason I was feeling exhausted and thinking how much easier it would be if I could go on my own.  However that's no longer an option so we set off complete with list and pen and somehow managed the supermarket in super quick time but it's the checkout which has become the problem as Ash, if you remember, has begun to get confused with what to scan first, what order everything should go through and which bags to use for what.  Today I scanned the items and handed them over for him to put in the bags, I did it slowly so that neither he or the self scanner went into meltdown (and either is a possiblity nowadays), we managed to get everything through without a problem and came home feeling calm and collected.  When we got back I suggested that he walk the dog while I unpacked the shopping and the bonus from that means that this week I know where everything is and won't have to hunt through cupboards to find his random hiding places whene…

Like caring for a child?

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A few weeks ago, in response to a comment on the post 'Sex and dementia' (27th October), I said that living with Ash now was like bringing up a child.  I have to think for him, organise both his life and mine, plan ahead to avoid melt downs and arrange everything else around him and his needs just as if he were a child.  However, I've thought this through further and realised it's more like looking after an aging parent.  We have a shared history but not a shared sense of humour; I know him well but not inside out; I do what I can for him in response to the things he did for me in an earlier life; I make sure he's safe and well looked after because I have a sense of responsibility but I do all of it as adult to (ageing) adult.  When you care for a child you can see them progressing as a direct result of that care and you know that, if you do it well, they will grow and develop into decent human beings.  When you're looking after an aging parent you can see the …

Christmas wish lists

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A friend told me a couple of days ago about her wish list for Christmas, the top wish being that she could wake up to discover this dementia lark was all a mistake.  This started me thinking about my wish lists and I realised I had three separate ones.  There is the list of huge wishes none of which are likely to come true: world peace; winning the lottery etc. etc.  Then there is the general, more achievable list which includes cooking my first Christmas lunch ever without burning anything (however many times I say I've been spoiled over the years people still find it amazing that this will be the first time I've ever cooked Christmas lunch - or any sort of roast dinner for that matter).  And then there is the list I keep tucked away at the back of my mind, it's contents itemised in no particular order, but with a determination on my part not to look at it if I can possibly avoid it.  This is the list which, just like my friend's, includes waking up to discover the wh…

A walk clears my head

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Woke up this morning at 6.30 am and foolishly thought 'I'll get up and make a cup of tea in a minute'.  BIG mistake.  Next time I opened my eyes it was 7.35 and Ash was in a vile mood because he was out of routine.  Sometimes (and for some utterly unknown reason) when he's in a bad mood first thing I ask him if he's ok and then get a tirade about how he's been awake for hours not daring to move in case he wakes me up and how he's completely out of routine and it's all my fault.  I really couldn't cope with that this morning so I ignored the black looks and the grumpiness instead going downstairs to make the tea and then climbing back into bed and lying there silently waiting for it all to pass.  By the time he got up things seemed to be on a more even keel and then I put on my walking gear and went out to meet a friend for our now regular ramble through the Lincolnshire Wolds so have no idea how his morning went.  I got back at lunchtime and all the…

Bad weather and dark afternoons

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Have had a lovely day out with friends today visiting one of our 'local' (2 hour round trip but one of the nearest) National Trust properties to see the Christmas decorations.  Left home at  9.30 am after writing out one of my, by now regular, large notices telling Ash where I was going to be and what time I was going to be back.  These have worked really well the last few times I've been out but I got home to be met with a white faced and confused husband who struggled to string his sentences together.  The note did work to a point and he could tell me where I'd been so wasn't worried as he has been in the past but he was most definitely confused and struggling to talk.  I really do think it's the foul weather we're having and the fact that it was almost dark when I came through the door at 4pm but I also know I have to keep an eye on it all just to make sure.  Tomorrow am going walking with a friend (apparently in the rain - what fun) but only out for the…

Just chilling

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You may have noticed that I've been a little lax in the blog posting department the last couple of days but I promise there's been a 'good' reason for it rather than life getting me down again.  On Friday I had lunch with two friends I've know for approximately 50 years.  You know, the ones you don't have to explain yourself too, the ones who know almost everything there is to know about you (some of which you wish they'd forget) and the ones you can talk to about absolutely anything and everything.  We used to get together every couple of years or so and then came Ash's diagnosis and we all realised how short life really is so now see each other every couple of months.  We meet for the longest lunches and never run out of things to say which is exactly what happened on Friday when we looked up and noticed that it was dark outside and time to go home.  Definitely no time to write the blog when I got back as I was instantly pitched into cooking a meal I …

Staying with good grace

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I've said all this before but, having read a post on a forum last night, I thought it might be worth saying again.  It seems to me that, if you're going to stay in the life of someone living with dementia you might as well do it with good grace otherwise what's the point?  When Ash was first diagnosed I/we knew nothing about dementia and I was one of those people who felt that if he just listened harder he'd remember, if he'd just try harder he could manage to carry on as normal and if he'd just talk to me about it all we'd be able to work through it together.  When none of those things happened I blamed him for everything that was wrong with my life and we went into a spiral of despair where we were more unhappy than we'd ever been in our lives.  It took Penny Garner and her team at Contented Dementia Trust (http://www.contenteddementiatrust.org/) to put me on the right track and I learned that if I wanted my life to be better I had to make Ash's l…

Another new strategy learned

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The saga of the decorating is now at an end and I have a beautiful new sanctuary which is almost entirely mine.  As you'll know this experience hasn't been without its dramas and at one point I thought my head might explode but we got through it and in the process I learned something.  Sometimes I think Ash is overwhelmed by jobs he would previously take in his stride.  Decorating has been one but you can add to the list chopping sticks, splitting logs, any DIY around the house  and on almost ad infinitum.  However my big lesson from this episode is that if I say 'don't worry, I'll do it' about half an hour later I look round and whatever it was has been done.  I have no idea why this is but it happened with stick chopping.  Last winter, without me really noticing, Ash bought bags of sticks from a local shop which was ridiculous when we'd been stockpiling broken wooden things such as garden furniture for the sole purpose of using them for sticks.  A couple …

Forgetting to leave the note

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Last night I had to go to a meeting which meant leaving home at 6 pm.  I remembered all the strategies and had tea ready for before I went, switched all the lights on in the house and left a large note near the kettle saying where I'd gone and what time I'd be back.  I got home three and a half hours later but, importantly, half an hour before the time stated on the note and Ash met me with the words 'you're home early' so obviously that had all worked and you'd think I'd have learned.  However this morning I met a friend for a walk in the beautiful Lincolnshire Wolds but arrived and realised I'd not only forgotten my phone but had also failed to leave the note.  As Ash had said when I was leaving 'have a good walk and say hello to J.......' I had a faint hope that he would remember the detail (and no I have no idea why I thought that either) but when I got home three hours later he was in a state of utter confusion.  Where had I been? Why was I…

Feeling amazing

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First thing today this post was going to be titled 'Never Again' as in 'never again are we going to decorate'.  The thought of everything he felt he had to do sent Ash into orbit as soon as we woke up this morning and we had endless conversations all of which went round in circles.  Not knowing what he had in mind to do I stupidly made a suggestion which most definitely wasn't what he had in mind and I could instantly almost see smoke coming out of his ears as his brain started to frazzle.  I shut up, made the tea, had my breakfast and then got ready to go on my Monday morning walk before I reached the point where I could no longer bring myself to count to 10.  In the run up to leaving the house I wrote out a suggested timetable for the morning, showed it to him and could almost see him come down from boiling point to simmer as he read it.  Got back from my walk and we went to buy the architrave for covering the paint splashes then had lunch after which Ash said he…

Surviving the decorating

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You'll be pleased to hear, I'm sure, that we survived the first day of decorating and came away relatively unscathed.  It was stressful but the interesting thing was that it made me realise how few stressful days I have now.  I have the odd day when I feel sick at the thought of what's to come, I have moments when Social Services create totally unnecessary difficult situations with regard to my mum, I have periods of time when I wish things could go back to how they were but on the whole life is, oddly, much less stressful than it's ever been before.  So why might this be?  I think it's because I'm settling for less than perfect and in doing so am finding that life is just easier all round.  This manifested itself yesterday in the decorating.  The yellow paint on the ceiling?  I just won't look up; the yellow paint on the door frames? it can be wiped off (I think but have yet to put this to the test); the fact that the new paint is a darker shade of yellow …

Decorating, and whose brilliant idea was that?

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Since my work hours have dwindled almost to zero and I'm relaxing into being at home I've found I can get to the end of the day having achieved absolutely nothing.  Friends think I'm exaggerating when I say this but I promise it's true.  I potter about all morning and suddenly it's lunch time, then I sit down to write this and suddenly it's time to start cooking tea.  In amongst this I walk, meet up with friends and garden (only in nice weather though).  The days, as you can see, fly by in a whirl of activity.   When I first reduced those work hours I sorted out my office and turned the room into my sanctuary, a place I could escape to when I needed to clear my head, but then I began to notice that it needed decorating so, for my birthday, I bought paint.  That was a month ago and the decorating is one of the things I have failed to achieve on a daily basis.  Ash however has mentioned it a couple of times over the past two weeks - 'I think I'll start th…

Is it ever ok to tell a lie?

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I wrote this post below and then looked for a quote to put at the end only to be horrified to discover that every single one of them was written to say that lying is always bad.  I can only think that not one of the people involved have shared their life with someone living with dementia.

When I was a teenager I frequently lied to my mum and to this day I like to think she believed me.  If I was going somewhere I knew she would disapprove of I told her I was going somewhere else; if I was going to do something she'd told me I couldn't I just wouldn't mention it but would do it anyway; I had a strategy and it never seem to let me down, in fact I would even go so far as to say I got quite good at it.  Lying to Ash however was another matter and the longer we were married the more impossible it became even if I wanted to.  Mostly this was because I wanted to share everything with him (even those things, events, moments he wasn't really interested in) but also because he w…

A boost to my self esteem

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A couple of days ago a friend who I've recently connected with after several (for that read 40) years shared this blog on her fb page and the number of views for that day shot through the roof.  Then yesterday a piece I posted on here a couple of months ago went out as part of the YoungDementiaUK (https://www.youngdementiauk.org/) bi-monthly newsletter and the number of views went even higher.  It was also shared on the organisation's fb group and some lovely comments followed all of which has given a huge boost to my self esteem but also made me realise how far I've come in the last two years.  I first came into contact with Kate at YoungDementiaUK when she emailed me to say a reporter had read the blog and been in touch to see if I would be willing to talk to him.  At that moment my confidence was at an all time low so Kate's email gave me a huge boost but for various reasons I decided it wasn't a good idea.  The feeling that overwhelmed me at the time however wa…

Pride comes before a fall

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This morning I was preening myself and feeling very proud of the fact that I haven't felt irritated by anything Ash has done for ages.  Not only have I remained calm at all times (except when trying to deal with Social Services regarding my mum and that doesn't count because it can't be avoided) but he really hasn't done anything that I've struggled with.  So there I am congratulating myself and polishing my halo when I make a throwaway remark about a group of people huddled together on the field outside our window and suddenly the peace is shown for what it is, a fragile stage in our lives and one which can unravel at any moment.  The remark really was throwaway, the subject was unimportant but Ash wanted detail and for some reason I thought he needed to know exactly what I meant.  I tried to explain but he couldn't picture the place I was talking about so I suggested we went out so that I could show him.  We got to the right place but by that time, unsurprisi…

Still discovering new skills

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Over the years as a family we've done lots of walking/hiking mostly beginning when Jake was little and we struggled to find the money for holidays.  Walking holidays meant that we could be out all day with no temptation to spend which was just what we needed.  We'd be first in the car park, Ash would hoist Jake (in the carrier) up, I'd pick up the rucksack containing the food and off we'd go, map and compass in hand, camera over a shoulder and a bit of a plan in mind.  We covered miles in Scotland, the Lake District, Derbyshire, Yorkshire - almost always north as it was a bit more rugged and felt more like an adventure.  The good thing about the carrying arrangements was that my rucksack got lighter as the day went on and we ate the contents while Jake got heavier as he helped consume the picnic but Ash never minded and it was a real family thing.  As Jake got a little older (ie from about the age of 5) he and Ash would go away on 'boy weekends' when they would…

Just when you think you've got every angle covered

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I really should know better but far too frequently I think I've cracked a particular problem and then I get complacent.  After the disaster of last Wednesday when Ash panicked because I wasn't back by dark and he'd forgotten he'd written down where I was and what was happening I have been leaving notes around the house in large writing on A4 sheets of paper.  Yesterday for example on the kitchen table I left a note saying 'Jane gone to Lincoln.  Back at 5pm' and that was all that was needed to keep him calm and at ease (I also make sure now that I'm home earlier than the time I've written down so he's not waiting for me).  This morning Ash had an appointment for a blood test at 10.52 am (and don't you love the optimism of the precise time of that appointment).  I was due to go on my Monday morning walk and asked if we could start earlier so I'd be back in time to go with him for the blood test.  That was organised, all was well and I was rel…

Focusing on the good is a good way to go

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I sat down this morning to tell you about the trials and tribulations of dealing with adult services in this county with regard to my mum but it's all soooo depressing and my new resolution, if you remember, is to try and focus on the positive so that wouldn't do at all.  I did however remember a conversation I had years ago with someone who worked for the council.  We were in a meeting and I'd commented on 'the grand plan'.  There was a short pause and then she replied 'I work at the council and I can assure you there is no plan, grand or otherwise'.    I'm now here to tell you that 20+ years later nothing has changed.  Forms asking for detailed financial information are sent for completion 'within six days' or we'd have to start all over again (this on a Friday as we're going away for the weekend), telephone messages go unanswered, further information is requested from us then ignored, promises are made but not kept, the list is endles…

The things you need to think about

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I told a friend this morning that I don't take the dog along on my new jaunts into the countryside not because he wouldn't love it but because having Max with him goes a long way towards keeping Ash grounded.  If he's out with me for any length of time Ash's normal routine is in chaos and that leads to anxiety, confusion and further memory loss.  So that's the dog considered but it made me wonder what else I have to think about or remember to do in order to make life as stress free as possible.  Some of these I've mentioned before but you may be new to this blog, you may have forgotten or you might just be interested all over again.  If none of these apply then please feel free to stop reading and return tomorrow.

A digital clock telling the day, date and time is in the kitchen for Ash to check if he needs reassurance.  Another is in our bedroom waiting to be plugged in as soon as we wake up but, and here's the thing to be considered, we live in the country…

Still learning

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You'll be pleased to know that yesterday evening when I was out passed uneventfully so it seems that, as long as we eat before I leave the house and that I make sure he's settled into the usual evening routine, I can still have the occasional night out.  It's not that I go out a lot you understand.  Opportunities for living it up in the wilds of the Lincolnshire Wolds are a little limited even if I had the energy but it's nice to know I can go if I want to and it's been yet another learning experience.  In fact almost every day since we discovered ourselves in the very centre of this adventure has been a learning experience and that isn't a bad thing.  I've learnt so much about how to keep life calm, how to make the best of what we've got and how to live in the moment.  I know I fail on a regular basis but somehow I always manage to pick myself up and move forward and in the process Ash is definitely happier than he's been for a long time.

He's …

Usual strategies no longer apply

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Yesterday I I'd organised lunch with a friend and also had a work related meeting another 15 miles further along the same road (if you're confused as to whether I've given up work or not I'm currently doing four hours a week which doesn't feel like work at all and in any case those four hours come to an end at Christmas).  These two things meant I would be out of the house from 11.30am until 6.30pm and in the past Ash has written this in his diary and been quite happy knowing I would sort supper out when I got home.  This time instead of the diary he wrote the barest of details in his little notebook and assured me that would be enough.  I wasn't convinced but he was adamant and we all know now not to argue with a person living with dementia so off I went.  Had a lovely lunch then went on to the meeting, leaving there at 5pm and phoning Ash to let him know I'd be home just after 6.  Arrived home to find him white and beside himself with worry as he hadn'…

Another day, another walk

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At the beginning of the year we went to Florida for two weeks and I decided it would be a good time to start running in order to get fit.  A friend had told me about the 'Couch to 5K' app so I sorted myself out with a low tec (AKA cheap) running kit and set out to lose weight and get to the point where I could walk uphill without getting out of breath.  Running on the track around the resort in Orlando was lovely.  It was warm, the signs telling me to look out of crocodiles and snakes added extra interest and I took to it all quite enthusiastically.  We came home and it was still February however, unlike Florida, it wasn't in the least bit warm but I kept at it until I twisted my ankle in a pot hole.  Two weeks later I started again and all was well but I started to get a little bored.  Now those of you who know me won't be surprised to hear that but you might be surprised to hear that I carried on for a few weeks after the boredom set in and then, suddenly, I came to …

A lucky escape

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The escape was this morning but before you sympathise with me over that I'll report on yesterday's visit to see the birthday boy.  The actual time spent with him was, as usual, lovely as Ash is always at his best when basking in the admiration of the 6 year old who he loves dearly, especially as the admiration is completely mutual.  There were presents to unwrap when we arrived, then lunch, then a walk/scoot to the park where the little one and Grumps had a competition to see who could go highest for the longest time on the swings.  Looking at the two of them shrieking with delight you would have no idea there was anything wrong but the build up to the outing told a different story as I was asked again and again what time we were leaving, who would be there and what we would be doing.  I answered the questions calmly, took the dog for a long walk so he could stay at home (one less thing to think about) and off we set.  We only stayed a couple of hours so we could be back befor…

Picking myself up and dusting myself off

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I seem to have spent the past few days/weeks bogged down with, and focused on, what's wrong with my life when, as we know, it's far healthier to consider the finer and more fun aspects of what's going on around us.  These haven't actually passed me by but it seemed that every time I sat at my laptop something had just happened which had rocked my world, sometimes only slightly but at other times with a punch to the solar plexus which left me breathless.  Now however I've decided enough is enough and it's time to focus on the good, to bask in friendships and life's new direction and report back on it all.  I'm only human (and have the attention span of a gnat) so have no idea how long this new determination will last but I'll give it a go and try to bring a smile to your faces with some positive and uplifting reporting beginning with last Saturday when we'd been invited for afternoon tea to celebrate the birthday of a friend.  Ash could make up h…

Battening down the hatches

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I've talked a lot recently about emotion and relationships when living a life affected by dementia and the changes we've experienced (and still are experiencing) were really brought home to me this morning.  I know we're supposed to live in the moment and not look back but the problem is that, as a spouse or partner, there will be so much shared history that some actions are automatic.  Are you in a 'normal' relationship?  if you are then it's likely you will think nothing of reaching for the hand of your other half, of putting your arm around them, of giving them a hug for no reason other than you feel like it or giving them a kiss on your way out the door.  That's what Ash and I did for the six years before we got married and for at least 35 years since our wedding but, from the day of his diagnosis, the hugs were forced and only when requested, the kisses were accepted not given and the hand holding was done absent mindedly if at all.  This morning we wo…