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Showing posts from March, 2020

A discovery

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I discovered this morning that I can stay optimistic, positive and calm in all of this as long as life trundles along according to plan.  If everything moves along smoothly and consistently I'm ok but as soon as something happens which takes me by surprise I'mm still amazed at how easily I can fall apart.  It happened this morning with something so insignificant that it's not worth reporting but just that one small thing sent me into free fall and made me realise what life must be like for Ash on a permanent basis.  At the beginning of this, and thanks to Penny Garner at Contented dementia, Jake and I learned all about the benefits of making life easier for Ash, of making sure he didn't have to make decisions unless he wanted to, of insuring that the trials and tribulations of daily life didn't affect him and through all of that he began to relax and have confidence in himself to the point where he could function better than he had in a very long time.  Recently I&…

The Mystery of the Missing Dog Food

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Life has been really calm here over the past week, there's been no dashing around, no driving out to meet friends for coffee, no rucksack packing to go off for a three hour walk, nothing but peace, quiet and a completely laid back attitude which has worked brilliantly as far as Ash is concerned but then came the mystery of the missing dog food.  Max the dog, much to his disgust, is on a diet and so currently has a mixture of two types of dried food.  To make life easier, every few days I fill a plastic container with a combination of the two foods then fasten on the lid where I've stuck instructions on how much to feed him and the days which can be ticked when he's been fed.  That way Ash can still be in charge of meal times but I will know when Max has eaten so both of us are happy.  Max isn't but that's only because he'd like to go back to the old regime where he can eat his tea then sit in front of Ash with large dark eyes pretending he hasn't eaten anyt…

Calm follows confusion

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If yesterday was a day of confusion today we seem to be back on track with only one question about whether it was ok to sit out in the garden.  It obviously was but almost as soon as we agreed that the sun went in and the point became irrelevant.  So this is quite a boring post with no drama, no hysterics, no highs and no lows but don't suppose it will be any the worse for that.  It was with no little trepidation that I'd mentioned when we got up that all the clocks needed putting forward one hour but Ash picked up on it and managed with only a small amount of effort and very little stress to reset them so we began the day with his self esteem on a high which is always a help, he then took the dog for his morning walk and I did the afternoon outing so we seem to be in a nice little routine there and all is well in our world at the moment.  No idea how long it will last but am making the most of it while it does although I'm interested to see whether the new way of living w…

Confusion reigns today

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Today hasn't been quite so full of joy as yesterday mainly because Ash has been confused and I've been cleaning both of which may be inextricably linked but I'd like to think not.  I thought I had the confusion under control but this morning he really couldn't get his head around the number of times he was allowed to take the dog for a walk or where he could go both of which seemed perfectly clear to him yesterday and just shows how dementia messes with the brain.  Wendy Mitchell, author of 'Somebody I Used to Know' (a highly recommended read), says that it's a bit like having fairy lights inside your head, sometimes they work and sometimes they don't and sometimes some of them work and sometimes none of them do and today it seemed as though quite a few of Ash's lights weren't working.  Anyway we've muddled through the day separately; I had a virtual coffee and chat with a friend first thing while Ash walked the dog somewhere around the vill…

Practising for a future life

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So how's your social distancing going?  Are you making the most of it or has life taken a turn for the worse?  Are you battling through or have you found that with a few small changes life is bearable or even, dare I say it, better than it was before?  Life here I would say is better than before now I've got my head around it all.  I admit that there was the huge blip at the beginning of the week but since then I've put my head up, shoulders back and faced the world with positivity and we're alright.  I'm writing this at tea time so thought you might like to know how my day has gone.  If you're not interested then feel free to look away now but it's been a good day so it might just be worth reading about.  You can also see if you can spot the mistake I made quite early in the programme.

Started with breakfast, then shower, then dressed ready for Joe Wicks and his fitness workout at 9am which for the first time I was determined to do 'live'.  And the…

'Stay at home' going better than expected

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Life is much, much better than I thought it was going to be now we're confined to barracks with just a couple of blips to overcome.  People have asked me since the beginning of all this how Ash is coping and I've said he's taking it all very calmly and that's true to a point.  He's not in the least concerned about the virus but I have noticed him becoming anxious about the new rules and what we can and can't do including whether it's ok to have the doors and windows open (again nothing to do with the virus but just making sure we're complying with the rules).  Yesterday I noticed that he was reluctant to do his usual afternoon dog walk and realised this was because he'd already been out in the morning and the rules say once a day.  Now I may be wrong but I think this rule is to limit the number of people out in one place at any one time and, as you can walk for miles here without seeing another soul, I'm not sure it matters quite so much as it w…

Mood swings and how to control them

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Are you as bewildered by my mood swings as I am?  Probably not if you too are living a life affected by dementia.  Maybe you're just surprised at my bewilderment but I've never really had mood swings you see and they take me by surprise.  One of my friends once said that I had an expectation of happiness in my life which even now I'm not sure was entirely true but what was true was that I rarely felt unhappy and it's only now that I realise how lucky I was to be able to live like that.  Currently things are a little different, I have more of an idea of what's to come and am fairly sure that things are going to get more difficult as time goes on but for now I hate the mood swings and after Monday's episode I decided I needed to find a way to avoid them whenever possible.  So what causes them?  I've thought a lot about this over the past couple of days and today I think I may have found the answer.  It's just possible that I find myself in a downward spir…

You can't keep a good woman down

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As you'll have noticed if you read the post yesterday was a really bad day.  I don't have them often but when I do I feel as though I've been punched in the stomach and I don't know which way to turn which I'm sure is something that many people feel in their journey through dementia.  However today is another day and you'll be pleased to know that I feel like a brand new person.  In case you were wondering I don't think this change is down to any one thing (although messages from friends absolutely helped) but there was a definite turning point when I messaged my Monday walking friend this morning to say 'well that's it then.  See you on the other side of this' and she said 'at least we'll have time to plan new walks' and that was it, my eureka moment.  We're now going to buy red pens (a necessity if ever there was one) along with our food supplies, work out walks and draw them onto our respective maps then when we finally get to…

Sometimes .........

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Sometimes, not often but just sometimes, sadness settles on me like a blanket and this is one of those times.  The sun was shining, I was out in the garden but I couldn't seem to shake the feeling and couldn't quite figure out why so I did my usual thing of thinking around it, examining it from all sides and I finally realised that it was because of my lovely day out.  As Jake gets older he's becoming more and more like Ash;  he has that joy of the world, that thirst for action and adventure, that sense of humour and that ability to work out a plan of action at the snap of his fingers just like Ash used to have so spending Saturday with him reminded me of what life used to be like before dementia struck.  And those thoughts made me realise all over again how much life has changed and how far we've come from it all.  And then, all over again, I realised how we'll never get back to that life, how there's no chance we'll ever return to normal and suddenly not …

Report on the 'Grand Day Out'

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You'll be pleased to know that I had a lovely day yesterday.  I know we're being told off at the moment if we venture from home but if you wander deep into a wood you'll find yourself in isolation anyway and that's just what we did.  Even though we followed a trail it was one no-one else was interested in and for much of the time we were there we saw no-one else so my lesson from this is that you can leave home but you need to find the places no-one else knows about and that way you'll get fresh air and social distancing all in one.  What's not to like?  I had reports back from everyone who'd called to check on Ash or keep him company through the day and all said he was happy, relaxed and pleased to see them and he even managed to heat up his own tea and light the fire himself so all was well there.  None of that however prevented him from letting me know I'd abandoned him and I was met with the (accusatory) words 'well that was the weirdest day'…

A grand day out

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Am writing this first thing in the morning, a morning when, for the first time in months, I woke without the sick feeling in my stomach which comes from living alongside dementia.  I'm going out for the day you see and not only that I have a whole day with just Jake and the 6 year old so I have no responsibilities and no decisions to make.  The days and weeks leading up to this point have of course been full of decisions and plans just to make sure it could all happen but it's now organised and I plan to relax and go with the flow.  A friend is calling this morning with cheese scones and a question or two about the work 'we've' done on the house so that will take at least an hour I would think then this afternoon two of Ash's friends are calling in for a catch up and around tea time another friend is calling just to see if he needs anything doing.  She was coming to sort out his tea (which is currently sitting in the fridge waiting to be reheated) but he said t…

A poem

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There are a number of poems doing the rounds all with varying views on dementia but mostly saying the same thing - there is a person still in there trying to be heard.  This is the best one I've seen in a long time and it called out to me on many levels.  I've said before that I really don't believe the old Ash exists any longer but that doesn't mean the person who has replaced him doesn't need my support and support from those around him.  If you read this and remember the message, if not the words, then you too can be a great support to anyone in your life affected by dementia.


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There's always a way

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I've realised over the past couple of days that the time since Ash's diagnosis has been preparation for self isolating and that can be nothing but a good thing.  Since that awful day we seem to have withdrawn further and further into ourselves at least as a couple and I'm now finding that there really aren't many changes we need to make to our lives in order to comply with what we're being asked to do.  Our joint social life had already dwindled to almost nothing so no change needed there, our village is rarely busy so no need to avoid people when out and even my lunches with friends I've discovered don't need to stop right now they just need to change.  Yesterday I was supposed to be meeting up with a couple of friends for our bi-monthly lunch date and we wondered whether to cancel (whereas my mum is safe in her care home theirs are both almost as elderly but living at home so they obviously need to be careful).  So we thought of cancelling but then came u…

Good news stories and positive vibes

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There has been much hand wringing on Twitter and fb forums from people who are currently unable to visit their loved ones in nursing homes around the world.  Comments such as 'I haven't seen him/her for 2 days and I'm distraught', 'how is she/he going to manage without seeing me?' and so on gather support from all areas but I'm here to put another side to the story.  I can see that if your parent/spouse/life partner is at the end of life, receiving palliative care or is very ill that you really want to be with them but otherwise, if you have faith in the care they're receiving on a daily basis (and if not why are they still there?), then mostly they probably won't even notice you're not there.  I had a long conversation with the manager of my mum's care home yesterday about a number of topics but one question I asked was 'what difference has it made not having visitors into the home?'.  Apparently since the 'no visitors' poli…

Good news only here ........

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Yesterday we went out for lunch with friends and it was lovely.  We had the restaurant almost to ourselves (which, I've only just realised, may have helped Ash a great deal), there was conversation, laughter and a great feeling of well-being all round so we came home on a bit of a high.  The best thing as far as I'm concerned though was that when we'd been home a while Ash came through to ask me the details of the afternoon.  He wasn't stressed or worried because he couldn't remember but interested to talk about it and find out where we went and who we went with and that was the loveliest thing, that he felt ok with admitting he couldn't remember and that the not remembering didn't spoil any of it for him.  Until now that lack of memory would have sent him into a tail spin but not yesterday so think he's beginning to feel safe enough to admit he has difficulties and to know that those difficulties are manageable which is a great breakthrough.  And the f…

Self esteem is essential to quality of life

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I had a lovely email conversation with the 6 year old's mum this morning.  I'd told her about the magic dust he'd spread during his visit and she said that he loves coming to stay because, in his words, 'Grumps knows everything' and this explains it all.  The grown ups around him, and certainly those who've known him a long time, notice what Ash has forgotten whereas the 6 year old just thinks he knows everything.   Ash subconsciously recognises both of those view points and as a result he's hesitant in the adult world but grows so much in confidence and self esteem in the little one's world.  The problem is that I'm never sure what he's forgotten and what he still remembers, I never know what he's capable of doing and what he'd rather leave to me and to add to that confusion these things change on a daily basis so the only thing to do is watch and try to judge when's a good time to ask and when it's best to get on and do it myse…

The magic of a 6 year old.

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The 6 year old arrived yesterday tea time bringing magic dust in his wake and, as always when he's around, life has tilted towards 'normal' for a short while.  Conversation through tea and up to bed time ranged from Corona Virus and what happens if school closes (he has school work to do) to hand washing and the importance of it (although judging by the black fingers he hasn't quite got the hang of that) to Unicorns and where to look for them just in case they're real.  At bath time conversation with Ash turned to Geysers:  what they are, how they work and where to find them and I was treated to a demonstration which put water across the bathroom, an event which caused great hilarity on the part of the 'boys' and it's so nice to see a smile on Ash's face that a wet bathroom is a small price to pay.  Now there's a plan in place to go and see some geysers for real when he's 20 as apparently he has to be quite old to go that far.  So that was l…

Doing things just for me

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Yesterday I went to have my hair cut, looked in the mirror, took a deep breath and asked to go 'short'.  I haven't had short hair for years and years, and mostly because Ash liked it longer, but for a while now I've been thinking I wanted something different and, given the opportunity, I went for it.  So what's changed?  You might think I did it because he no longer notices much about me but actually that's not strictly true at the moment.  For the past couple of weeks he's commented occasionally on what I'm wearing, the fact that I've put make up on (we'd had an argument and I looked awful so decided to cover it up and, shallow person that I am, it instantly made me feel better) and how I look so he might notice but in fact I did it for me.  I've discovered over the past two years, and especially the past few months, that I don't need Ash's approval to feel good about myself, I don't need to reflect in his admiration, I can appr…

Why didn't I just say 'OK'?

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Yesterday tea time we went into a downward spiral of discussion not helped by the fact that I'd been to see the film 'Military Wives'.  Top tip - don't go if you're feeling emotional or, if you do, either go on your own or with someone who'll cry as much as you do (something that, luckily, I did).  Anyway got home still feeling emotional to find Ash had been out for a drive in his truck  and then we got into a totally avoidable (on my part) circular conversation about how he didn't need diesel right that minute.  Should just have said 'ok, let's go and get some' which would of course have been my advice to anyone else but I was tired and really didn't want the 10 mile round trip to get it and so decided to explain that it could wait until next week.  We went round and round and round until we managed to agree to drop the subject but then to make matters worse I went out to look and, because he'd been out, he did indeed need diesel in ord…

And the theory continues .............

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The tale of this morning actually follows on from yesterday's musings I think.  Went over to friends to collect some logs, filled the back of the truck with them and then came home.  No fuss, no drama, just a job quickly done and my plan was to leave Ash to unload the wood into his 'yard' (aka 'corner at the top of the garden') then come home tonight to the smaller pieces next to the fireplace ready for adding to the grate.  That was my plan but, as often happens, fate hadn't read my plan and the reality was Ash looking at his 'yard' and deciding he might as well get rid of the old wood in order to make room for the new which completely defeated the collection of those logs which were supposed to see us through the winter.  I almost agreed with him in the hope that he would forget all about it but there are some things which lodge in his head and I knew this would be one of them then a statement from him that he would need at least three trips to the ti…

A new theory

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I have a theory about why Ash is anxious when we're in the outside world and it came to me when I was thinking about my walk with him last week.  If you remember I'd persuaded him to come with me on a walk out in the Wolds with the dog.  He was so enthusiastic when I suggested it and that enthusiasm lasted right up until we got out of the drive and onto the road then anxiety set in and stayed with him until we were back home.  I really couldn't understand why he was anxious as I knew where we were going, we wouldn't be far from home and it's not exactly the middle of nowhere but I've been pondering it all ever since and realised that whenever we been for walks in the past he's always been in charge.  In charge of the map, in charge of the compass, in charge of getting us from A to B and that's what's lodged in his mind.  Over the past few months I have actually managed more or less to read a map and to plan a walk but Ash doesn't know that and, …

Anxiety held at bay

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At Christmas Jake gave me a beautiful faux fur throw (try saying it out loud and let me know how you get on).  I'd dropped into conversation that I'd like a fleece throw and was actually thinking of something a little lighter but the one I was given is so much better than the one I'd had in mind that all I have to do is pull it over myself in an afternoon and I'm instantly asleep.  A few weeks ago I mentioned this to Jake and we had a bit of a discussion about weighted blankets and how they are supposed to help people living with anxiety then I thought  no more about it except to look lovingly at the faux fur lying across the back of the sofa in my sanctuary.  A few nights ago, towards the end of the 'no heating' saga, I took it upstairs, laid it across the bed and fell fast asleep under it's all encompassing warmth.  We kept it on for Friday night when the house was still reheating itself and then last night I thought we no longer needed it so made to take…

Life is getting back to 'normal'

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After a week without heating the boiler is fixed and the house is becoming warm again.  Great news but the week highlighted the importance to Ash of feeling useful.  All last week when coal, sticks and logs were so important he was responsible for them and he thrived.  What was particularly striking was that he knew without being told that they were important and that made the difference.  No pressure from me or anyone else just a daily routine of getting out there, gathering it all together and putting everything in front of the fireplace so that I could light it and keep us warm.  The smiles and jokes were back (not to original level but close), conversation was there and he was feeling good about himself and his role in our relationship.  Cut to this morning when we woke to warm radiators.  Stupidly I forgot that we'd moved on so when he asked what we were doing today I listed my mundane chores and then, as a final comment and without thinking, said 'and you just need to sp…

Retuning

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The heading refers to the TVs in the house and nothing deeper than that.  Yesterday was retuning day (across the country I think but definitely in this area) and once upon a time that would, like everything else I've begun to realise, be Ash's job.  He would have noticed the message that flashed up every time he turned the tv on and I would have come home from work yesterday to find all three retuned and ready for action.  This time the message which has flashed up on a daily basis for the past two or three weeks has taken him by surprise every time and he's come through to tell me about it mentioning each time that we mustn't forget to do it.  Yesterday, once we were home from overheating in the supermarket (see yesterday's post if you have no idea what I'm talking about), he switched on to watch the news and then came through in a panic because he couldn't find any of the instruction books to tell him what to do.  This is actually the third time (at least…

An exhausting morning ........

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...... in more ways than one.  Ash's truck was booked into the garage following a recall on his type of vehicle for air bag issues and it meant being in our local town 10 miles away by 8am this morning.  In any normal life this wouldn't be a problem but for us it meant setting the alarm, taking the dog out further and much earlier than usual, having breakfast while we were out, me taking my car and Ash following in the truck, all things which were different to normal which in turn meant we were both awake at 5am, him worrying about the fact that there was something different happening today even if he didn't know what and me checking and double checking that I'd covered every eventuality.  So I was exhausted before we even set off but then there are my current clothing issues to add into the mix.  You may remember that we have no heating which means I'm wearing so many layers I look like the Michelin man (I even ate my breakfast in my coat this morning) and I'v…

Still cold

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Still no heating but have the promise (from our wonderful plumber) that the part will arrive and be in place on Friday morning then it's just a boiler service and who knows, with an almost rebuilt system, we might be in for a period of calm.  Also though still a feeling of being in this together which is something I haven't seen for a while so not all bad.

And so on to another event in my life.  Yesterday I spoke to Laura Kelly who is a student at Liverpool University.  She's in her third year and is doing a study on how 'spousal dementia carers' (I'm not sure about this term but it's not the worst thing I've been called) can develop resilience while caring for loved ones living with dementia.  No idea how long I was on the phone because, as you've probably gathered, I have quite a lot to say on the subject but Laura listened, asked questions, gave me time to breathe when I needed to and also let me ramble on to my heart's content.  It was a ver…

Becoming a grown up

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You'd think that, having got to 59 (60 this year), I'd know what being a grown up looks like but since Ash's diagnosis I've begun to realise how far from that state I've been most of my adult life.  With Ash to lean on I've never really had to grow up.  He was always there to support me, to tell me I was amazing and to make me feel I was a fully independent woman without me actually having to take on much in the way of responsibility.  This was really brought home to me yesterday when out for a walk with my Monday walking friend.  We'd traipsed across fields, climbed hills and got lost at footpath junctions all the while putting the world to rights on topics as varied as the NHS, education, teenagers, New Zealand, Corona Virus, diet and so on.  Suddenly we got to a particularly boggy section of the footpath with no way round, just a way through with the help of wooden fence posts laid across the deep mud, tree stumps to balance on and small rocks to lead th…

Still laughing....................

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Who'd have thought that being without heating could be such a useful exercise.  I'd prefer to be warm without thought going into it of course but this is turning out to be a great shared experience.  We've reminisced about our first house where, after a couple of months, we removed the one and only gas fire and opened up the fireplace.  No checking of the chimney, no thought of how long it had been left unused, just take the gas fire out, buy a grate, pile up sticks and coal, add a match and there you have it, instant heat.  We also had thick brown sludge coming out of the taps as the unsuspected back boiler leaped into action but that also meant we were creating our own hot water so what's to dislike?  We were 21 and 22 years old without a care in the world and relishing the fact that, through our own efforts, we had a house with (just the) one very warm room.  So shared adversity has it's advantages and this morning when we woke up and started laughing as we watc…