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Showing posts from November, 2020

What makes a day good?

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 Today has been a very good day. Yesterday was a little difficult but not today.  This day has been full of smiles and energy and efficiency. So 'what's made the difference?' I think I hear you ask and I've been wondering that myself.  It could have been the clearing of my desk, the sorting of piles of paperwork, the baking or the fact that I've finally managed to move the DVD recorder from the sitting room, where it was feeling lonely and unloved, into my office/sanctuary where it is now hooked up to the TV and ready for action.  Each of those activities has certainly contributed to my feeling of well-being but what I think started it off was my new, mint coloured, jumper.  I know that might sound a little odd but stay with me while I explain and it might make more sense.  The past ten years, for a variety of reasons, have been very dark and those dark days were reflected in my clothes.  For almost the whole time I wore black; black trousers, black cami tops, black

Determination beats the blues

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 I had a bit of a down day yesterday: we're in tier 3 and who knows for how long; I couldn't get my head around the new rules; a friend, for reasons way beyond her control, had to cancel our walk; my upcoming weekend away is now off and on and on.  It seemed that every way I looked there wasn't a ray of sunshine in sight and I prepared to be miserable, not only that but I prepared to be miserable for days to come because what was there to look forward to?  However you really can't keep this girl down for long.  The friend couldn't come with me but that was no reason for me to stay at home so I put my boots on and went on a voyage of discovery, walking an area I've only recently been introduced to and finding in the process some beautiful parts of the countryside I'd been totally unaware of before.  I came home in a much better mood and decided not to wait to order the treadmill.  In case you missed it this is a Christmas present to me from me and I was going

Life gets just that little bit more difficult

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So we're in tier 3 which means we still can't get out for those cups of tea in an afternoon but to be honest Ash seems just as happy with me joining him in front of the tv at 4pm every day so he won't mind at all and it's only me who will be thinking wistfully of the friends I was planning to meet and the mini escapes that were in my diary.  If it gets us all back on track however it will be worth it so I'm blocking out those thoughts and redirecting them, as usual, towards more pleasant things.   BUT it's actually not just the new Covid restrictions which have pulled me up short as today seems to have seen more of that gently slide into dementia that I've been half expecting beginning with waking up this morning to Ash turning to me and saying 'I can't remember what we do in a morning'.  Part of me was downhearted at this but part of me was pleased because for once he wasn't upset and he didn't seem anxious; instead he seemed to be putti

Creating emotional space

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 Some of you may remember that at the beginning of the first lockdown in March I started running with the aim of passing the time, getting fit and losing weight.  I'm not known for my commitment or staying power so no-one was more surprised than me when I managed to complete the nine week Couch to 5K programme and then carried on some more.  In fact I carried on for several months before an eye problem made me decide on a two week break from running and I walked instead.  I did start running again but after a few days my knee began to hurt and I decided that walking was the way to go.  For the past few months then I've been leaving the house at 7am and walking for an hour.  I walk the same route I used to run so I know the distance is 5K and I have to tell you I love that walk.  The first part of it takes me to the top of the lane heading east so most mornings I'm greeted with red sky and a glorious sun rise.  Some mornings there's been mist which has settled in the hol

A parallel universe

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 This afternoon I've really felt as though I'm living in a parallel universe.  To understand the whole story you need to know at the beginning that Ash has a Kindle on which he plays endless games even when he's watching endless episodes of his favourite quiz shows.  A few days ago the cover to his Kindle case broke so I ordered another one and that's the information you need to remember. This afternoon I went to see mum in her nursing home.  They have a brilliant set-up for visiting where we're in a separate part of the building with a plastic screen between us and a carer alongside so there's someone else to talk to if conversation with mum dries up which, if I'm honest, it does quite early into every visit.  So I arrived and was taken to the sitting room while she was brought in by a member of staff.  She was pleased to see me but it wasn't long before I realised that she didn't quite know who I was.  She put up a good pretence but for the first t

A lovely weekend but .....

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We've had a lovely weekend with sunshine, chats, enthusiasm for life and all those things that are mostly missing from our life together nowadays.  Ash has been in a brilliant mood with some semblance of his old sense of humour at the fore which has made life, for a short while at least, fun and yesterday I even managed to get him to come on a walk with me.  We didn't go far but he was happy and that was enough BUT as always I was lulled into a false sense of security.  I forgot that these really good times are always followed by a further slide into dementia and last night was the beginning of it.  Three things really stand out.   Every afternoon for the last month Ash has lit the fire.  We have a cup of tea and watch one of his quiz shows together then I leave the room so that he can get it all sorted without any temptation on my part to interfere.  Yesterday when I mentioned the fire he was taken by surprise that he was expected to get some warmth into the room.  He did it b

A grocery trip with the potential for disaster

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Thursday is grocery shopping day in this house and the routine is always the same: leave the house at 9am, drive to town 15 minutes away then into the first of the two supermarkets we use.  Same two, in the same order, every week then onto the butchers followed by the veg shop.  We have the same route in each shop and the same routine which involves using the self checkout so we can go at our own speed.  Ash puts the shopping bag on the end of the checkout, I empty the trolley one item at a time and run everything through the scanner before handing each item to Ash to put into the bag.  This happens every week and we've settled into a gentle rhythm which means the trip is non threatening, stress free, quick and easy.  At least it has been until this morning when we got to the self checkout in the first supermarket to find a very helpful attendant who, for reasons I missed, needed us to use a particular checkout and he needed to put our first item through which he did with remarkabl

Entertaining a visitor

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I discovered this morning that sometimes when  I think I'm coping really well and almost surfing the waves of dementia which constitute our life nowadays it's not quite true.  Mark, our wonderful Admiral Nurse, came to visit and asked how we were doing.  He reads the blog so there was no need to go into detail but it did mean that he knew about my blip a few weeks ago (see blog post of 2/11/20) and the row which ensued.  I knew that that particular episode was well and truly in the past and hoped, if nothing else, that I'd learned from it but what I didn't expect was my reaction when he asked me about it.  He asked if there was anything in particular which sparked a less than positive response from me when Ash was being difficult and at first I couldn't think of anything.  These episodes have always seemed random and have usually come out of nowhere but the more I thought about it the more I could see a pattern and the pattern is that Ash sits down for a serious tal

A life left behind

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If you're living a life affected by dementia I wonder how often you think back to the way things used to be.  In the years before Ash's diagnosis, when life was strangely different, I used to occasionally think wistfully back to the days when we'd go out in the evening but it was ok because I knew that he had anxiety and depression so, with the right medication, we'd soon be back on track and our social life would pick up again.  Nothing to worry about there then.  But the diagnosis came and it seemed there was no cure and he wouldn't get better so I began to mourn that old life and the loss of the future we'd planned.  I missed the man who'd disappeared in December 2017 and I had no idea how I'd cope without 'my' Ash.  The mourning went on for some time, just over two years in fact and actually right up until this spring, when it occurred to me suddenly that I hadn't lost him in December 2017, I'd lost him way, way before that.  I can se

Keeping up with changes

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You may remember that I came up with a system to make sure Ash changed his clothes on a regular basis and that system involved three identical sets of clothing so he didn't have to worry about making a choice and then every other night when he was in the bath I would scoop the dirty clothes up and drop clean ones in their place.  This worked perfectly until Jake came for a prolonged stay of four days.  He was happy to do the washing but when he suggested to his dad that he put his dirty clothes in the wash basket ready to go into the machine the suggestion didn't go down well.  I have no idea exactly what happened but the clothes definitely didn't get changed and the washing definitely didn't get done so changes had to made ready for the next weekend I have planned.  I began by carrying on with the scooping up of dirty clothes but left Ash to find clean ones for himself and then Jake suggested more sets of clothing so that we could get into a new routine of putting ever

A life with treats

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In a past life if I was thinking of buying something new I'd have at least mentioned to Ash that I was thinking of getting it and he would have had an opinion.  His opinion to be honest wouldn't have made any difference to my decision to buy but I would have told him and he would have been aware of what was arriving at the front door.  Now I consider things by myself, add them to my list and then, also by myself, make that all important decision and sometimes that doesn't feel quite comfortable.  I've been pondering this for a while and then someone emailed me, someone who sends me interesting and supportive emails on a regular basis, and she told me that at times like birthdays, anniversaries etc she now treats herself as her husband used to and still would if he were able.  That made me think again about the treats I'm buying myself.  Only yesterday some friends and I were in the middle of a video chat when the subject of Christmas presents came up and the best wa

Something else to look forward to

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Do you remember how I was a little despondent about my birthday?  How I was determined to be ok about it while all the time really, deep down, thinking about how it would have been had dementia not come along to spoil the party?  Then I had the amazing idea of getting my new car and not only getting it but arranging to collect it on my birthday and that one idea changed my whole perspective around the event.  So now we're coming up to Christmas and I had the brainwave of buying new decorations and going for a whole new look which I will love and Ash might just be able to cope with so once again I've managed to turn my thinking around but I've also decided to take it one step further and buy myself a particular present to be opened on Christmas Day.  I've tested this idea, along with the detail, out on some of my friends and, mostly, it's been met with a deafening silence so now it's your turn to let me know what you think.  I've decided to buy myself a sliml

A sense of achievement

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 Who'd have thought that a set of poles screwed together to make one long wiggly wand and pushed down a drain could bring such a sense of well being.  I've NEVER had to clear the drains before.  That was a boy job in this house along with mowing the lawn, chopping wood, decorating, changing the oil in the car, using a drill, fixing the plumbing ....... lots and lots of jobs which I never had to even think about never mind tackle.  The sink in the kitchen has been slow to drain for months now though and last night I decided I'd ignored it for long enough.  I knew where the relevant drain was, I knew who I could borrow the rods from so it was time to roll up my sleeves and get on with it.  Today then was the day so I asked Ash to lift the cover and reveal the pipe in all its gory detail and that turned out to be the first challenge because I'd never watched that very boring part before so I didn't know how to get the cover off and he'd forgotten.  Not only that bu

Plans are afoot

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 You might be relieved to know that I'm no longer in reflective mood and am now looking forward again.  I know we're still in November and I wouldn't normally dream of planning for Christmas until that all important date of the 1st of December but that's exactly what I've started doing and all in the cause of keeping my spirits up.  Last year we survived Christmas and in many ways it was lovely.  We spent time with family and friends, there were presents and celebrations BUT the minute we put the tree up and the decorations came out anxiety struck and Ash started asking those all important (to him) questions.  When were Jake and the 6 year old arriving?  Where were we spending the big day? What would we be eating?  Who was cooking?  on and on until I began to see that decorations were not the way to go.  They were the trigger for his anxiety, they were unnecessary and I wouldn't do it again.  That was fine and noble of  me and self sacrificing but it did seem to

Was it true?

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 Do you ever look back on your non-dementia-affected relationship and wonder if your memories are quite correct?  Do you think you might be imagining that things were wonderful and that the person you now have in your life couldn't possibly have been that amazing before dementia got in the way?  I do that sometimes.  I look at the man in front of me, the one who's become old before his time, the one who, despite my best efforts, is almost permanently anxious and I wonder if I've dreamt about the life we had.  The man I think about could make me laugh from the minute I woke up to the minute I went to bed; he was so full of energy I could become exhausted just watching him; he rarely stressed about anything; if you needed a hand you only had to ask and he'd be there; he was up to any challenge I, or anyone else, set him and he was always ready for the next adventure.  All of this disappeared drip by drip until he became someone I didn't recognise but I had no idea it

Some new strategies

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 First day of lockdown and it's gone well.  I was a little worried about not being able to get out for a cup of tea every day but did some baking so Ash could have a treat with his afternoon cup of tea and then I downed tools at 4pm to join him in front of the tv for an hour.  We're rarely out for longer than that on our trips so am hoping that if we can do this every afternoon he'll be happy with it as a replacement.  It certainly seems to have done the trick today as he's been very relaxed and happy although I think this might because he thinks he now has my undivided attention every day for the next 4 weeks. So that's one new strategy and another is around clothes.  You may remember that Jake had difficulty with the laundry while I was away as Ash flatly refused to put his clothes in the wash when it was suggested.  I thought about this and am fairly sure he was worried about having to find clean clothes in the cupboard and possibly having to decide what to wear

Is this the way to make a cup of tea?

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If you share your life with dementia you may find yourself taking note of the smallest of changes in your loved one which will probably be unnoticeable to the outside world.  You've all heard about the pork pie episodes (and by the way I found one in the cupboard the night before my weekend away and another one two nights ago) but the other thing that plays on my mind is the way Ash has taken to making a cup of tea.  He was always very particular about his tea, making it in a pot, leaving it until he had the full flavour and then pouring it into his favourite mug.  Now he still makes it in the teapot but he uses water from the kettle without necessarily boiling it then pours it straight away into a mug which goes into the microwave for heating up before being poured into an insulated mug and then taken away to be drunk.  If he forgets to drink it he just puts it back into the microwave for reheating.  Now I'm not particularly interested in how my tea is made and friends will te

A difficult couple of days

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 This weekend hasn't been the easiest to get through for a variety of reasons, none of them Ash's fault but all dementia related and it seems we're in a new phase so I was taken unawares on a few occasions which means I didn't react well.  Ash is in that difficult stage where he's very much aware of what he used to be able to do and equally aware of what he can't do now and that's very damaging to his self esteem.  It also goes a long way to explaining why, when I brought wood for the fire back from a walk (something I do at least twice a week), he accused me of taking away one of the few jobs he can still do.  I know this isn't him talking and I know he would be mortified if the real him could hear the way the new him talks to me but it doesn't alter the fact that I didn't answer the accusation as I should have.  I didn't murmur sweet nothings and walk away and instead I bristled with indignation and snapped which did nothing other than exac