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Showing posts from June, 2019

2 steps forward, 1 step back

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The calm reported yesterday unfortunately turned out to be the one before the storm and this morning it all fell apart again.  I worked out why quickly enough but by then it was too late; Ash was shouting, I was crying and we descended as we so often do nowadays into chaos.  However I was on my way out of the house anyway and was already late so left and drove off.  Fifteen minutes into the journey I'd had time to calm down so I rang (we're not yet at the stage where we can't have a phone conversation) and we talked through what had happened including, on my part, what we discussed two days ago.  He obviously didn't remember and I didn't expect him too but he'd certainly retained some of it so I rang off and carried on.  When I got home this afternoon he was waiting with a hug and an apology which is really all I need and we seem to be back on track.  The thing I found most interesting about it all is that, even though he really can't remember what was said…

Knowing when to draw the line

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Against all advice and everything I've learned over the past 18 months two days ago I was shouted at once too often and discovered where my line in the sand was.  We're told to go with the flow at all times, to agree with everything and to walk away from hurtful comments knowing that they're not meant and that our person with dementia has no control over the things he or she says but is that really true every single time?  I've noticed you see that a couple of times Ash has been about to bite my head off over something I've said and then, realising there were friends around, stopped himself and just agreed with me or ignored whatever it was that I was saying or doing.   For a while now I've done exactly as I've been told,  I've walked away from confrontation; I've agreed that I've been wrong and I've attempted to change the subject and lighten the mood only it's rarely worked and over the past few weeks the whole thing has moved into a d…

I wore them!!

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Last week I told you about my gorgeous new shoes; black, peep-toed court shoes with red poppies on them (if you missed the photo and would like to know what I'm talking about go to the post on 18/6/19 Shoes to Make me Smile).  One of my friends who knows about such things actually said she had shoe envy which did my self esteem the world of good and, as I was meeting her for lunch today, I said I would take them along with me so she could see them.  She replied 'don't bring them wear them' which was a major challenge to someone who habitually wears black or grey clothes along with flip flops so from that moment the shoes were staring at me every time I went in the bedroom, daring me to do it.  Sometimes I could feel their gaze through the bedroom floor into the sitting room below but every time I thought about it I went hot and cold.  Could I really bring myself to wear them and in the middle of the day and out for lunch?  I agonised for days then a couple of nights ag…

Lifting the mood

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Since the weekend, for obvious reasons I think, I've been feeling a little flat and this hasn't been helped by the sense of surviving the aftermath of the trip.  Ash's temper has been short to say the least and it's been easier to say nothing rather than risk triggering an outburst so the house has been silent and the weather's been foul.  This morning I woke feeling the same way yet again and realised I had to do something but what?  If you remember, last week it was shoes which brought a smile to my face; today it's been a paint colour.  I'm still in the process of turning the office into a sanctuary for me but if I'm perfectly honest it's once again becoming a dumping ground and partly due to lack of funds.  This working very reduced hours lark is all very well but not great for the bank balance so the amazing side tables I'd discovered for each side of the sofa were out of the question however I have discovered a website called 'pre-love…

There is no end to what can be achieved if you believe

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So we came through the beautiful wedding relatively unscathed.  We stayed away from home for two nights; we looked after the five and a half year old and got him to the church on time (looking beyond cute of course); we scrubbed ourselves up pretty well; we mixed and mingled with people we didn't know and made conversation; we met up with old friends and made new ones and all was right in our world for most of the weekend.  It took some planning and it's taken some recovering from but I was just thinking to myself 'well that went quite well' when I remembered something and that memory came from last year when we were told to save the date.  I of course said we would but to be honest I really wasn't sure we would make the wedding at all.  I can't now remember the detail but life was, and still sometimes is, difficult.  Ash had mood swings which I was just learning to handle and I couldn't even begin to think about life twelve months down the line.  Dementia …

A wedding and a spray tan catastrophe

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Have you been wondering where I disappeared to?  Well we've had an adventure (also called living a life affected by dementia) and spent a long weekend in the Cotswolds attending a fabulous wedding.  And where did the spray tan catastrophe come in?  That was of course down to me and my inability to look glamorous at any time.  I had Ash organised with his suit (he doesn't dress up often either), a new shirt and a new tie so he looked very smart and I had the dress, blue shoes and blue nail varnish to match so I really had made an effort.  Then it came to my legs.  I'd really been working on the tan and was doing well until the last two weeks and all the rain when the tan faded just enough to make my legs look paler than the rest of me so I headed out to buy spray tan.  Now I'm currently reading a Marian Keys book where she warned about spray tan and a friend who knows all about these things also warned me and told me to make sure I rubbed it in properly.  However the in…

What does he do all day?

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Many people ask me what Ash does with his time nowadays especially those who knew him in the old days, the days before dementia struck.  Far back in the mists of time Ash was so full of energy, plans and projects there really weren't enough hours in the day.  He would leap out of bed at 6.30am, make the tea then return to bed while he talked about his plans for the day.  There would always be dog walking, often there would be churchyard mowing, gardening, some DIY project or other, helping out neighbours, a trip to the tip, the list always seemed to be never ending and he would be on the go from morning until night.  While he was working all of this was fitted into the odd spare half hour here and there;  when he retired he set up his own business firstly training and then doing odd jobs wherever he was needed so still it was all fitted in here and there.  Then he began to slow down and I couldn't understand why.  He didn't seem to be ill, he wasn't old but whatever it…

Shoes to make me smile!!

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Anyone who knows me will tell you that I'm not a fashion icon.  I'm not the right shape for the clothes I'd like to wear, I prefer to fade into the background by wearing black and I hate feeling uncomfortable so that kind of restricts what I buy.  I'm also hopeless with shoes.  Again comfort is the key and the fact that I'm between a 4.5 and a 5, hate heels, look rubbish in flat shoes due to having short legs and quickly develop sore soles means that shopping for shoes is a nightmare.   I also have no idea how to avoid having swollen feet when I'm traipsing from shop to shop in search of the perfect shoe to go with an imaginary outfit to slide onto a body which in my mind is 5ft 6 and a size 12 when reality states it's 5ft 2 and a size 16 at the top and 14 at the bottom.  Now do you see my problem?  My difficulties with clothes shopping are endless so imagine my surprise when last Friday I was given, as an actual present, a pair of shoes I instantly fell in…

Things I've learned over the past seven days

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I am gaining many new skills as you may have noticed if you've been reading this for a while and there isn't a single one that would have come my way if dementia hadn't been lurking somewhere in the back ground so what did I learn last week?  I learned that no matter what Ash wants to do it's easier to let him;  that if the five and a half year old is around life is infinitely better; that friends and an amazing son are the best support a girl can have; that readers of this blog are also amazingly supportive; that it's easier if a new recipe has no more than five ingredients; that sometimes I need time to myself in order to clear my head; that it is possible to sort out a broadband extender by myself and, finally, that if I'm cooking with chilli peppers it's of the utmost importance to wear disposable gloves when chopping them up!  These are all things that in a previous life would have been Ash's domain so although dementia may have caused a huge amoun…

A better day

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You'll be pleased to hear that today was much better than yesterday.  The five and a half year old helped of course as he lights up all of our lives and diverts the focus of our attention away from all our difficulties.  Today he'd brought his train set along to keep him occupied but Jake was also unwrapping late birthday presents and who needs a train set when you have a camp fire grill and extendable marshmallow forks to play with so that was him set.  He and Jake had also brought along a pear tree which was Ash's Father's Day present and it came with strict instructions (from the five and a half year old) to water it and look after it.  Apparently it's going to be inspected on each visit and I dread to think what will happen if we appear to be failing in our care of it.  So today there were smiles in all directions, only one or two points where Jake and I had our heads bitten off and the little one came through completely unscathed as usual as he can do absolute…

A day of several parts

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I know I said I was going to focus on the positive and mostly I'm managing it but let's face it that's not a realistic view of life and I'd hate anyone else on a journey with dementia to feel as though my life bears no resemblance to theirs so here is my version of today - good in parts and not so good in others.

It started off worryingly with Ash almost rigid in bed and not speaking but that's not a definite indication that something's wrong so I thought I'd wait and see.  It seems that he'd thought of a job in the garden he had to do but couldn't remember what it was.  We talked through things, he worked it out and briefly we were ok.  Unfortunately his mood was up and down all morning which is never a good sign so I waited with trepidation to see how everything was going to pan out.  A friend called to return a dress she'd been altering for me and stayed for a cup of coffee and a chat which was lovely and a brief respite from the atmosphere w…

Doing nothing is unhealthy

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For the first time for as long as I can remember I have spent two days doing (almost) nothing.  Recent holidays don't count due to the need to be on 'red alert' at all times in order to head off any possible crises but being confined to home due to vile weather is a different matter.  At home Ash is generally relaxed and able to potter to his heart's content and mostly I don't have to worry about him so how has this panned out?  You'd think I'd be relaxed, stress free and able to just enjoy myself.  Instead I've developed my first cold in over three years, I feel completely exhausted and I have no idea what to do with myself.  You see?  doing nothing really isn't good for you.  On the plus side my office/retreat, although still a work in progress, has come into it's own.  I've been able to watch my favourite rubbish on the television, I've been able to shut the door and have a nap and I've been able to type this in peace.  Generally …

Rain rain and more rain

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If you live in UK and you've looked out of the window recently you'll know that the weather is vile.  It's raining, raining and once again raining but, following a recent theme, things could be worse.  We live at the top of a slope, not a steep one but a slope all the same, which means we're not in danger of flooding; the rain gauge is still keeping Ash interested and occupied; the water running down the track in front of the house is brilliant to watch and, best of all, we have an open fire to snuggle in front of tonight if the rain continues.  The last is a source of great comfort as when the weather is awful I think there really is nothing than better than watching it all happen right outside the window as you're warm and snug inside.

In just over a week we're off to a wedding and last night I was discussing the weather forecast with the mother of the groom (and a great friend).  She, apparently, is off to buy silver wellies just in case the weather hasn'…

It's one of those days

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Only halfway through the day but it's been one of those!  A day where everything that could go wrong has gone wrong, where I'm feeling out of sorts just because I seem to have achieved nothing and where I'm flitting from one thing to another unable to settle just because things haven't gone to plan.  However I've remembered my promise of yesterday and so have considered each 'calamity' and inspected it to see how it could have been worse.  This is something Ash and I got quite good at on a camping trip to France around 3 years ago.  That holiday was one calamity after another from the truck blowing up on the third day to getting the rented minibus (big enough for camping equipment and the dog) stuck on the first floor of a multistory car park to having to drive solidly for 12 hours through the night to get to the ferry on the last morning and numerous other interesting events along the way but at the end of each day we listed everything that had gone wrong …

A new determination appears from nowhere

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This isn't the post I was going to share today but I've just been reading over posts I wrote months ago and it's occurred to me that my sense of optimism has gone astray.  I'm not sure exactly why that's happened but it's clearly not helpful or conducive to my well-being (or yours either) so I've decided it's time for a new start.  The weekend was lovely but I did tend to dwell on the fractious run up to the off and then the blip when Ash forgot where he was.  What I failed to remember was the lovely place Windermere turned out to be; the fact that our cottage was right in the centre; the amazing walk to the lake we found which we could cover in numerous different ways meaning Ash could mentally relax while we found new views to take in; the lovely restaurant where we sat on the upstairs terrace and watched the world go by beneath our feet and. best of all, the fun of seeing all the different coloured swimming hats bobbing up and down in Lake Windermere…

Back home and all settled in

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Great journey back from the Lakes even if it is hours from home and definitely better than the journey up when the Sat Nav took us onto the Bradford ring road.  Don't you just love technology!  Got home to four messages on the answerphone from my mum saying she needs to go home to clear the house ready for selling!  The interesting thing is that she now mainly seems to phone when we've gone away.  I told her we were going to watch Jake swim and, although I don't think for one moment she remembered the detail, I do think that subconsciously she knew we weren't at home and this made her anxious.  Have now rung the home and asked them to assure her that we're nowhere near selling (due in part to incompetent estate agents I feel but that's another story) then will talk to her about it when I see her later in the week.  So that's my mum.  Back in the house three times I've had to stop Ash unpacking a bag of dirty washing.  I kept putting it back in front of …

..... and the sun came out

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So Jake's swim didn't quite go according to plan and I'll start this post with the news for those of you who sponsored him that he didn't quite complete the course.  He did however swim 8.3k of the complete 10k course which, as most of us would struggle to join the children taking part in the 250m event, I think is a real achievement.  He's not quite so sure about that and is disappointed that all of his training over the past few months wasn't enough.  As he said in his fb post

Difficult post to write this one. Short version: I DNF'd and pulled out at 8.3k after 5 laps. Longer version: cold from the start, really cold. Water temp of 14 degrees sapped all my energy. Cramp in calf, hip flexor and quad from 5k which meant I had to be conservative with kicking and couldn't do breast stroke when I wanted a rest. Couldn't figure out whether I was shivering or not but knew I was cold to my core. The chop from the wind and wake from boats made me nauseous on …

I remember when ..........

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....... weekends away were relaxing and moods didn't turn in a heartbeat.  Yesterday and the beginning of today were lovely.  The cottage has just what we need, Ash was completely at ease despite the long drive, the dog's happy and all was going to plan.  The weather's awful but that wouldn't usually matter, after all we have proper 'gear' from all those years of walking and camping, however I managed to remember every single thing except Ash's waterproof coat so off we went in search of an outdoor shop.  This being the lake district we didn't have to travel very far and he liked the first one he tried on so once again we were on track.  We found a lovely place for coffee where we could sit and watch the world go by as though we didn't have a care in the world and the good mood lasted right until we got back to the cottage and Ash decided he had no idea where we were.  I had a map so tried to explain but apparently when I suggested we stood at the f…

Great North Swim here we come

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Will shortly be setting out for the Lake District to watch Jake's adventure in Lake Windermere.  He's been training hard and I'm completely in awe of the fact that, just as Ash is retreating from his old self, Jake is discovering the commitment, energy levels, confidence and determination his dad used to have.

Anyway, up early to pack clothes, food, electronics, the all important clock telling the day, date and time and all those other small things that make Ash feel safe enough to allow him to function away from home.  The dog's coming with us and we have planned walks so very little is left to chance.  Oh and apparently there's a fish and chip shop right opposite the cottage so we won't starve.  What else could we want!

To date Jake's raised £1813.17 on-line and £75.00 in cheques which, for those of you who've only joined us recently, is all for Contented Dementia Trust.   If you've missed all my ramblings about the amazing work they do then go to…

Cheese? what cheese?

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So Ash is no longer the person he was which is only to be expected but the difficulty has been getting to know the new person who now shares my life and learning to love him even though there are parts of his personality which are a struggle to get to grips with.  To do this I have watched and waited, worked out what makes him tick and accepted the differences between who he is now and who he was.  One of the things that has for me turned into a personality trait I can hang on to is his liking for cheese.  For the past year each week we've visited the cheese shop in our local town and spent a fortune on the stuff.  This, along with the biscuits we also had to put in the shopping trolley, has been the basis for his nightly supper plate and I've become used to him disappearing to the kitchen at 8.30pm to get it all ready.  This was a long and drawn out process which I found irritating at first but then became a part of who he was.  Today we set off on the weekly shopping trip an…

What do we think?

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A post popped up on FB just now talking about memories and how they can never be taken away which is something I have no argument with.  One of the comments however was from a lady who said that even with dementia her mum is still her mum and underneath it all she is still the same person.  This I do take issue with.  Perhaps in this lady's case it's true but in our case I really don't think Ash is the same person he was before dementia struck.  It's true his old sense of humour occasionally shines through but the person I have been with since I was 15 is no longer in existence.  I realise that over the years people change and we've both done that but the man who made me laugh every day is no longer there; the man who was always up for an adventure has faded into the background; the man who was consistently calm, always reliable, constantly looking for ways to enjoy life no longer lives in this house.  The man with enough energy to last a lifetime, with a joy of th…

Benefits of a care home

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You may remember that at the beginning of March my mum had a fall which resulted in a four week stay in hospital(s) then a three week stay in a residential home before moving to a (hopefully) permanent care home.  She had always made me promise not to 'put' her in a care home but has really battled with herself over the past few years.  After my step dad died three and a half years ago mum has struggled with living on her own.  She hated the silent house and despaired of her own company.  Then she began to fall, in the sitting room hitting her head on the window sill as she went, in the kitchen headbutting the tiled floor on her way down, coming out of the local cafe making contact with the pavement and, finally, going headfirst onto the road which necessitated the trip in an ambulance and the four weeks in hospital.  She had at least ten  falls in twelve months.  Weekly visits to a lovely care home not far from her village helped the feelings of isolation, lunch at the local …

That self esteem thing again

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I've written quite a lot about Ash's self esteem and how important it is to his well-being but I hadn't quite realised how important it is to mine too.  If you read yesterday's blog you'll have seen that I've now added lawn manager to my list of new roles/skills and, apart from the grass at the front where parallel stripes are apparently of great importance, I was allowed to mow the lawn.  In the scheme of things this was quite a small event but you have no idea how my self esteem soared this morning when I looked out of the window and saw all over again what I'd achieved with that machine even if it very nearly took my arms out of their sockets at the time.  In fact the whole garden is looking pretty good and that's something I never thought I would be able to manage so I'm feeling quite content with my life at the moment.  More importantly however this really has shown that attitude is everything.  At the beginning of all this, when Ash stopped ta…

Another milestone in this new life we're leading

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Haven't posted for a few days as the five and a half year old burst into our lives again on Thursday and there really hasn't been much time for anything else.  Instead there's been weeding to do; conker runs (step ladder, drainpipes, gaffa tape, rope, a large magnolia tree and a bowl of conkers discovered in the depths of the play house) to make; streams to be paddled in; fields to run around; sandcastles to be created on the beach and tea parties to be had.  He left this morning and the two of us, plus the dog, have collapsed with exhaustion but it's been brilliant.  Ash is so relaxed in the company of the five and a half year old that it's almost like old times and there really is nothing like the total admiration of the grandson (who thinks Grumps can do ANYTHING) to rebuild that self esteem however short a time it lasts.  So after all that the part of my brain which suggests that the past months/years have all been a big mistake and we can now get on with norma…