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Showing posts from December, 2019

Afterwards

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It's all over.  Decorations are put away, life is back to normal and you have no idea how much better I feel.  Catch-up with a friend yesterday, walk with another this morning and cup of tea with yet another this afternoon have all set me back on the road to recovery.  Add to that a spot of ball throwing for the dog out in the sunshine before lunch and you can see that life is looking up.  The problem with Christmas I've decided is that it brings so much expectation in it's wake and with dementia that's never a good thing but in this house you can't keep a girl down for long so I'm now looking forward to 2020 with hope and enthusiasm.  I don't make New Year resolutions on the basis that it's a bit like the minute you've started a diet and immediately want to eat pizza and chocolate - what you can't have or what you can't do are the things you most want in the world at that moment.  Add to that the fact that I have little staying power or com…

Life is sometimes complicated

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Christmas is now officially over in our house and this will be my last word on it I promise.  I was very brave during the run up to the festivities and I really thought I had it all under control but, just in case you struggled and felt that you should have been able to cope, I wanted you to know that it's the hardest thing I've had to do so far in this complex relationship I have with dementia.  All those traditions we'd built up together over the past 37 years are now lost; all the shared glances across a room, all the excitement of surprise presents which had been thought about and planned so carefully, all the discussions over favourite parts of the fun and games are no more and, without the real Ash, Christmas was a struggle.  We had good times of course and those times kept me sane but sharing a house with a stranger who has no interest in your well-being is very hard at any time of the year and at Christmas it seemed there was no escape.  So now it's over and I …

Holidays, celebrations and me

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So it seems I'm not very good at things like Christmas, birthdays, anniversaries, holidays etc.  All those things that have had a special meaning in our lives with their own traditions and points of reference are so different now as to be unrecognisable from the past and I've realised over the past few days that I still haven't dealt with that aspect of dementia.  In day to day life I really feel I've got a handle on it all but the past few days have made me understand that I still spend lots of time looking back and wishing for our old life all over again.  A friend suggested a couple of weeks ago that possibly I was over thinking one particular event and I agreed but still failed to take it on board. It took a comment on Thursday's post to show me the error of my ways and that is why I love writing this blog.  Lots and lots of you are battling with your new life in the same way I am and we all seem to cope with different parts and struggle with others but the sup…

To socialise or not to socialise, that is the question.

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We had a lovely day yesterday with our annual visit, along with family and friends, to one of the oldest and nicest hotels in the county.  This is a once a year wildly extravagant treat when we get dressed up and travel an hour and a half to spend the afternoon in a sumptuous oak panelled dining room where Charles I may have eaten during his stay in 1641 so you can see this wasn't just any trip out.  Ash was really keen to go, there was no stress involved as we got ready, we didn't hurry and just made our leisurely way there ready to meet the family and friends.  There were six of us and Ash was at his best with 'host mode' to the fore.  He chatted, joined in with people-watching, enjoyed the food and was genuinely part of the group BUT (and there is always a 'but' nowadays) we then had the long drive back and by the time we got home he had no recollection whatsoever of where we'd been, who we'd been with or why we'd gone out.  This I think is one o…

Decisions, decisions, decisions

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If you're not in our situation, if you're not sharing your life with a spouse/partner who is living with dementia but you've read enough of this blog to think you've got your head around it a little you might think that the hardest part of it all is making those big life decisions on your own.  Should you change the car now or wait a year?  Should you move utility companies to try to reduce payments and if so which one?  Should you make another attempt at a holiday and if you do what do you need to think about (and believe me it's a very long list)?  Should you move your mum into a home or leave her a little longer to fend for herself with diminishing input from you because you have to prioritise your support between two of the most important people in your life?  Should you give up work and accept your changed financial state now or should you wait a little while longer and continue to juggle things?  But if you're actually living this life you'll know tha…

You are not alone

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How's your Christmas going?  Is it better than you imagined or are you in those first few months following the diagnosis and still reeling from the shock?  Are you sitting quietly and peacefully or have you been persuaded into a maelstrom which is making everything worse?  Is it just the two of you or are you surrounded by family?  However you're spending your Christmas, however you're living your life at this moment, however you're confronting the dementia which is at the centre of everything you do, this song will I think say it all.
https://www.youtube.com/watch?v=-bQdBxfuHFU
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Onward and upward

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Yesterday, for a variety of reasons and not all of them dementia related, was a bad day but I've decided to let it all wash over me and start again.  What I forgot to tell you last week was that something else I wrote has been included in the Young Dementia UK newsletter and on their website.  In the newsletter Kate very kindly says that my last contribution was so well received that they asked me to write for them again but in reality I'm enjoying the writing so much I asked her to let me send in a contribution for each of their next 6 issues and because she's obviously a very lovely person she agreed.  If you want to read my thoughts on 'Christmas with Dementia' then click on this link https://www.youngdementiauk.org/christmas-with-dementia.  Once on the website you can read other stories written by family members which are fascinating so why not have a look.

So now it's onward and upward towards the big day which won't be quite as big as usual but will b…

Who is this man?

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After years and years of leaving me to get on with putting the decorations up Ash decided today to 'help'.  Up until this point his only contribution has been to put the lights on the tree and lights around the front door and we've managed perfectly well.  Everything has had its place and tradition has been everything but this year is different and I've had to sit on my hands a lot as tinsel has been strung up, candles have been put in places I wouldn't have thought of and the tiny decorative trees I love have found cubby holes I didn't know existed.  It doesn't look awful but it's different and a little unsettling.  This was a man I definitely didn't know but worse was to come.  I've felt very proud of myself recently for coming to terms with what's happening to us, for staying calm at times when I would in the past have hit the ceiling, for being comfortable in my own company and happy with my world.  That was still mostly all there until …

Another black hole

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Got home yesterday after a day clearing stuff from my mum's house to find Ash in fine form.  He'd apparently been helping in the church yard and couldn't wait to tell me about helping to clear the gutters at the side of the drive down to the church door and as far as I could see all was well.  Cut to the very early hours of this morning and being woken to a frantic 'Jane' from the man next to me.  What day was it?  What time was it?  Where were we?  What had he been doing all day? The questions, along with the waves of panic, came thick and fast and at 1.40 am I was struggling to come up with the answers.  Eventually I suggested a cup of tea which seemed to meet with approval but by the time I got back upstairs with two steaming mugs Ash had gone back to sleep.  He woke as I set his down beside him and then had no recollection of what had happened or why I was providing tea at such an unearthly hour.  When he finally fell back to sleep I was wide awake and stayed l…

Two years on

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Exactly two years ago today we were sent on our way from the Memory Clinic with the word 'dementia' ringing in our ears.  We drove home in silence and then prepared for the gradual decline in abilities that we knew was coming.  As you'll know if you've been following this blog for any length of time it hasn't quite worked out that way  but when I sat down to write today's post I realised I wasn't  sure how far we'd come since that dreadful day as living with it on a daily basis makes it hard to tell.  I recently discovered that there's a search option at the top of each blog post so I decided to find the post from last year (if you want to read it then look for the little magnifying glass symbol at the top right of the page and type in 'one year on') to see what I'd written all those months ago.  Interestingly from what I wrote then not much seems to have changed in the last twelve months and I realised that, although many of Ash's s…

How many dish cloths does it take .......

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.... to wash a sink full of pots?  Actually it's never even a sink full as we have a dish washer but nevertheless we begin each week with one clean cloth then, within a couple of hours, another has joined it.  This has been going on for a while now and, as they're changed regularly throughout the week, we've already been getting through more than I would have thought possible.  This week we hit a record however when the number on the side of the sink crept up to three and today when I looked there were four!!  I took them quietly away to put in the wash bin and put one clean one out then the next time I looked there were two of them again and it's driving me crazy.  What's wrong with having one out at a time and why do they keep multiplying?  As reported in previous posts other things in the house disappear (I never did find the washing up liquid or the fire lighters) but dish cloths seem to pile up with increasing regularity.   At least now if there ever comes a t…

Christmas wrapping

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Just an update on the Christmas wrapping situation.  Having decided that I was going to have to take full control of the paper and sellotape (no ribbon or bows as I'm not good with finishing touches) and become comfortable with the idea Ash decided this morning that it was going to be the usual joint effort.  Think this is yet another example, just like the stick chopping, log splitting, lawn mowing etc where as soon as he's realised that I'm perfectly capable of doing something by myself the pressure lifts and he's been able to take the lead.  The wrapping wasn't quite as slick as in the past but it was certainly better than my recent efforts so I'm going to stick with it and let him do it if he wants but sort it myself if he doesn't.

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Mini meltdown

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So what circumstances could possibly combine to send me into a mini meltdown last night just as we were going to bed?  If I mention radiators piping hot three hours after the boiler should have shut down for the night, a programming 'thingy' on the wall showing a blank space where the time should have been and heating on but all lights off would that be a good enough explanation?  Heating on but all lights off would also have been an excellent description of my head at that particular point by the way.

 Emjayer said in a comment a few days ago that she'd had her plumbers hat on and fixed a boiler error so I felt I should be able to sort it all out but I really didn't know how and in desperation I flicked the switch on the wall and shut the whole thing down thinking I'd have another look in the morning (ie today) then went and sat at my computer to give my head time to clear before I ventured upstairs.  I got Ash out of the way before he panicked by suggesting he we…

Christmas preparations so far

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Christmas preparations for this year have so far been a revelation.  I've written the cards and wrapped the first two presents all by myself and I can't quite believe how simple it's been.  No working out when we can both sit down to do things together, no waiting for instructions on where to cut the paper and how to put the sellotape on just pick a moment and get on with it in what ever order I like.  Last year, I realise, I was still trying to stick to what I thought of as 'normal' and then, because is wasn't quite as usual, it didn't sit comfortably with either of us  but this year acceptance of the whole situation has led to a new way of doing things and it's been lovely to find it so relaxing.  I was a little worried that Ash would want to help and then get frustrated with it all but he walked into the kitchen as I was (badly) wrapping those first two presents and he didn't even notice so I know now I really can just carry on and get it all don…

A deconstructed Christmas

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For years and years our Christmas has been more or less the same with the odd ebb and flow.  I wrote the cards and Ash stuck the labels on the envelopes; we wrapped the presents together but with him making sure that wrapping was neat and tidy; we had friends over on Christmas Eve; we went to those same friends on Christmas Day; sometimes Jake was with us and sometimes not; my mum and step dad joined us to start with and then just my mum; Ash and I bought each other surprise presents and so on.  This year it's different.  I've written the cards and stuck the labels on the envelopes all by myself; we're at home just the two of us on Christmas Day; my mum is cosily ensconced in her care home where they're having a party on Christmas Day and so things change.  Mostly things are different because Ash has dementia and, if I was inclined, I could blame all of it on that but in reality it's other changes in addition to the dementia which have meant we're on our own on…

Sense of humour still intact

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Went to see my mum today for an early Christmas celebration with Jake and the 6 year old.  Bit sticky first thing when Ash decided he wasn't coming but I just agreed and then said it was a shame as he'd miss the 6 year old opening his present (Lego) from mum.  That made him prick his ears up and have a rethink so off we went.  Had a lovely time with lunch in the 'bar' at the home complete with crackers and Christmas napkins but the best part was when Ash was the first among us to notice that Bob Dylan was playing on the radio.  Not only that but he was also the first person to realise that 'Knocking on Heaven's Door' is probably the most inappropriate song ever to play in a care home full of 80 and 90 year olds.  Luckily it all went over mum's head and for a short time, as we shared a family sense of humour, it was like turning the clock back.


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Great times with friends

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Yesterday morning was spent doing a three and a half hour hike (have you noticed they're getting longer by the week?) with one friend getting home in time for a shower and a quick lunch before heading back out to meet another friend for coffee, cheese scone and a catch up.  Neither of these two things were connected with dementia and instead topics of conversation over the day covered education, autism, dyslexia, 'Just William' (stories by Richmal Crompton) politics, the amazing views over the countryside, job hunting, Christmas, holidays in general, Japan in particular, travel, carrots(??), the NHS, New Year, my mum, films, children and other subjects that were equally interesting but now lost in the mists of time.   At the end of yesterday I felt completely invigorated and realised all over again how important it is to escape occasionally and find other things to think/talk about.  Am now just waiting for yet another friend to collect me so that we can go and see the Chr…

De-icing the windscreen

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It was a frosty start to the morning:

Ash:  'are you going out in the car this morning'?
Me:  'yes, in about half and hour'
Ash:  'do you want the windscreen de-icing'?
Me:  'that would be brilliant.  The scraper's in your truck'.
Ash:  'do you want the car starting as well'?
Me:  'no thanks, I'll do that later'.
Ash:  'so you just want the windscreen clearing'?
Me:  'yes please, that would be great'.
Ash:  'shall I spray it and scrape it'?
Me:  'yes please, the scraper's in your truck'
Ash:  Silence followed by 'So shall I just scrape it and spray it'?
Me:  'yes please'.

Then confusion as he stares at the two sets of keys, one for my car and one for his truck.

Me:  'would you mind spraying the windscreen of my car to clear the frost'?
Ash:  'Ok' and off he went.

Really can't believe it took me so long to understand how to play that particular scenario.


Don…

Weird!

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Now here's a strange thing.  Yesterday I reported lying in bed in (fleeting) despair at the lack of physical contact between the two of us, how Ash hadn't responded when I reached for his hand and how the emotional connection we used to have in abundance had disappeared.  This morning I found a friend had emailed me to say that last week when she was over she noticed Ash touching the back of my neck as he walked past.  The weird thing is not just that I'd forgotten but that I hadn't even noticed and I wondered how often that has happened over the past two years while I've been feeling sorry for myself.   I think sometimes we can get so wrapped up in our difficulties that we can miss the good times, those fleeting moments that make life more manageable and by doing that we're really writing the story of our lives as we see it rather than how it actually is.


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The decline in skills continues

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Yesterday morning Ash noticed the rinse aid in the dishwasher needed topping up which has always been one of his jobs.  He did at least know where to pour the liquid but had to come and ask me which liquid he needed.  He knew 'rinse aid' but couldn't equate it with the bottle displaying the words 'rinse aid' in large letters on the front.  Then I mentioned the screen wash needed topping up in my car and he immediately leapt to his feet and went to find it.  That bit was fine but when he got out to the car he had to come and find me to ask where it needed to go and whether he had to add anything to it.  This might seem a very minor thing but for 37 years he's been the person in the house with responsibility for our vehicles.  Topping up screen wash has been amongst the very least of those responsibilities and explains why the questions came as a shock.  We both recovered from these two episodes and I've now mentally added the tasks to the ever growing list o…

What pushes your buttons?

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I snapped at Ash yesterday and I'm not really sure why.  I've made a pact with myself not to snap, not to be irritated and to accept that this is how life is for as long as we have left together.  The fact that he makes the same comments about quiz show contestants we've already seen doesn't bother me; I find it amusing that he moves things around from cupboard to cupboard and doesn't think it odd to put a bread loaf anywhere other than the bread bin; it really doesn't matter that he comes through every evening while I'm cooking tea to ask me which lights I want on in the dining room.  None of this has any impact nowadays but when he came home from walking the dog yesterday and told me for the third time that he'd met the nanny with the baby from the new family who've recently moved into the village I thought it important to tell him for the third time that it wasn't the nanny but the mother and her baby.  For the third time he didn't believ…

Never mind the washing up liquid .........

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.....where are the firelighters?  Some of you may remember that a few months ago bottles of washing up liquid were disappearing on a very regular basis and I was tearing my hair out looking for them.  That problem seems to have been overcome somehow and the washing up liquid supply is under control but now it's the turn of the firelighters.  We have an open fire to relax in front of every night and Ash is the one to light it.  He insists on firelighters even though they're not really necessary and we were buying them every week but then I found a really cheap supply (remember my economy drive) and six boxes were stacked up in the cupboard.  Those six boxes however didn't last long for some reason and we ran out in the middle of the week so I went and bought a box of 30.  As we really only need two or three at a time I thought that would take us up to the next week's grocery shop at the very least but three days later Ash told me we'd run out again!  The empty box w…

Life is good

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From the outside looking in I imagine our life looks fairly narrow now and certainly, if I could have looked into the future, my younger self would have run a mile from the situation we find ourselves in.  There were years when we both worked flat out and not always at the same time or in the same place.  Ash could go off on a Monday morning and unexpectedly not come back until the end of the week; Some days I'd be out of the door at 7.15am and not get home until 8pm.  There were weekends I'd go into work to finish off paperwork, days when Ash wouldn't come home until I'd gone to bed and all the time we were busy, busy, busy.  As a young teenager Jake learnt to cook because then he figured he wouldn't be living on ready meals (he too is, and was even then, a person who looks for solutions to any problems that raise their ugly heads), he learnt to use the washing machine and to iron his clothes and sometimes we all led fairly separate lives which is why I think that…

Depression

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Someone asked me today if Ash was depressed at all because of his diagnosis.  I thought about that and realised if I'd been asked even six months ago I would probably have said yes but now I really don't think he is.  In fact I would go so far as to say that, at the moment, he's very content with his life and I'm sure that contentment stems from my (very recent) total acceptance of our new life.  Before that all important diagnosis Ash was being treated for anxiety and depression as they have similar symptoms to dementia and I would say that then, and for a long while afterwards, he was anxious and he was depressed.  I also think that both of those were linked to the fact that I was unhappy and he couldn't see a way to change that so it all became a vicious circle - the more anxious he was the less like the Ash I knew and loved he became and the more unhappy I was which increased his depression.  When he was diagnosed with dementia we were both stunned but I was th…

Are you a 'Life Enricher'?

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Walt Disney once said that there were three types of people in the world: Well Poisoners who discourage you at every opportunity and suck any enthusiasm out of life, Lawn Mowers who are well intentioned but self-absorbed and Life Enrichers who reach out to enrich the lives of people around them.  For more detail on this you need to go to   https://thinkhumanity.wordpress.com/2009/10/21/three-types-of-people-in-the-world-be-a-life-enhancer/, for my thoughts on the subject however you can stay right here.  But, you might think, how is this relevant in our world of dementia?  How does the topic touch our lives and is she really thinking about us?  Well I'm certainly thinking about me and maybe, just maybe, my thoughts on me might help you.  Reading the piece on Walt Disney I realised that, although I tried in the past to be a Life Enricher, I was much more of a Lawn Mower.  I did what I needed to do, I spent time with friends and family, I hope I was fun to be with but work always se…