Showing posts from December, 2018

Support (or lack of it) in all it's guises

I hear a lot from people whose friends have abandoned them once a diagnosis of dementia enters their lives, who are left to muddle through as best they can, whose families argue amongst themselves over the best way to deal with the situation and whose acquaintances can't see a problem. Everyone's situation is different however and as far as we're concerned we've been very lucky.  Jake came on that initial course with me and so we sing from the same hymn sheet and he is always there if I need him while friends have been extraordinarily supportive with invitations to events, short breaks and suppers most definitely not in short supply.  Not only that but there is always a plan in place to make sure Ash can cope with whatever social situation we're in which means he's relaxed when we go to anything as he doesn't find any of them difficult.  If he doesn't want to go for whatever reason (usually because there will be too many people) I go on my own and every…

Christmas 2018 is almost over

Taking my mum home today so by the time I get back tonight I think Christmas will be well and truly over.  She's been here six days and we've all survived so that's something to be celebrated I think.  It's not that she's difficult but she likes the heating on high, the volume on the television turned up and the Daily Mail to read every day.  She also likes to be out and about so there's no lounging around enjoying the silence but I think I can safely say that we've all had a good time.  We were with family (including the wonderful 5 year old) and friends on Christmas Day and with family for a very posh Boxing Day lunch in the most beautiful surroundings (our Christmas present from mum).  Mum and I went to see Mary Poppins Returns on Thursday and were out visiting yesterday so Ash had two days to himself, we've compromised on television programmes in an evening and watched dvds which all three of us like.  All of the juggling seems to have worked and ev…

The origins of a positive attitude

If anyone ever wondered where my positive attitude comes from all they needed to do was watch my mum in action this afternoon.  She is 90 next April but has been looking at Christmas decorations everywhere we've been over the past few days and has decided that hers need an upgrade ready for next year.  The past few hours then have been spent in the local garden centre going through the sale items and we have come away with a new tree, a 'cherry blossom' LED 'thing', a battery operated lantern and two battery operated gold candles.  Oh and all this followed  a visit to one of her oldest friends (they were at primary school together) who is now in a home.  My positivity pails into insignificance I think.

Christmas 2018

This Christmas was so different to the last one and in such a good way.  Just as in 2017 we spent the day with family and friends but this year there was no feeling of panic bubbling away under the surface, no sense of despair as I felt my world spiraling out of control and no grieving for the life I thought we would have but was now gone.  This year I was full of hope, plans for the future and a feeling that everything will be ok.  Contrary to what some people might think however I do not live in a fantasy world.  The hope that I have and the plans I have made are based in reality.  I know that life may get more difficult but nothing stays the same and having a plan allows me to be flexible when I need to be.  I'm not saying life over the past few days has been without it's difficulties but where necessary we quickly made changes and the minor blips were overcome.  Ash coped with four extra people staying in the house, one of them a very excited 5 year old; with sleeping in t…

Coping with uncertainty.

To paraphrase something my favourite DJ said this morning you need certainty in your life in order to cope with uncertainty and I'm sure this is what's making Ash's life easier.  He can cope with sleeping somewhere other than our bedroom for the next two nights (we're sleeping in the well insulated summer house) because I've put his clock in there which will tell him what day/date/time it is each morning just as normal, we'll be able to listen to the radio as normal, I have the bed set up and tea making things in there so he can have his morning cup of tea and so life first thing in the morning will revolve as it usually does.  In the rest of his life he's uncertain when having to find clothes and choose what to wear but can be certain that his clothes will be on the floor in the usual place because that is where I leave them and they will be what he usually wears because I've bought 5 sets exactly the same; he could be uncertain about taking the dog fo…

Christmas is coming and all is (almost) calm

No idea when or if I'll get chance to post again before Thursday so thought I'd get one in now.  Currently getting the house ready for Christmas with all that entails including cleaning floors which is a never ending job when you live at the end of a track and have a dog.  Usually I time it for when Ash takes said dog out for a long walk in the afternoon but today I'll be collecting my mum at that point so have just done it and will try to ignore the muddy paw prints when I get back later.  Ash was looking a little bewildered this morning as I was making beds and I was slightly worried it was all going to go pear shaped so I slowed my movements right down to a leisurely pace, cleared the pressure from my face and just (slowly) got on with it.  As I keep saying, I'm not a saint and so hope you'll appreciate how hard this was for me but it was definitely worth it.  The bewilderment disappeared, he discovered that firewood needed dealing with and off he went to spend …

Personality changes aren't always a bad thing

We often hear about dementia causing changes to a loved one's personality and these stories are most often seen as detrimental.  People talk about aggression, anger, paranoia, loss of confidence, confusion and other things in the same vein.  Of course these things do happen and I have seen examples of some of these at various points over the past few years as Ash's dementia crept slowly onward.  Now however I am noticing other differences and all of them for the better.

Decorating: We've gone from cream throughout so that I could avoid looking at stray splashes of colour on various surfaces to a feature wall in each room carefully painted with neat edges and corners.  The colour on each feature wall was also chosen by the man who, until now, really didn't care what went on as long as it was quick and easy to apply.

An awareness of health and safety:  The man whose favourite phrase was 'stop worrying, it'll be alright' as he planned some new hair brained schem…

Disaster averted

Most of the time Ash is so close to 'normal' nowadays that I occasionally forget and that happened this morning.  Last night we were out with friends (and am loving this newly discovered social life).  Ash was so chatty it was amazing to watch so when we woke this morning I started talking through all the things that needed to be done before the big day just as I used to.  These really weren't anything too strenuous and there was no thought other than working out in my head (and out loud) what to do and in what order.  Suddenly I realised that Ash was very still and not commenting.  He had taken what I was saying and turned it into jobs to worry about and routines to be changed.  I was very proud of myself as I stayed calm, reduced the number of things to be done to practically nil, told him that he didn't have to do a thing as all of his jobs (present wrapping, lights round the front porch, logs in the wood shelter etc) were finished and the rest of the preparations w…

One year on

Today is exactly one year on from the day of Ash's diagnosis.  The day when we fell into a pit of despair from which I thought there was no way out.  Ash went white and stopped talking, I couldn't stop crying and we really thought our world had come to an end.  In private I cried through most of Christmas and then almost every day for the next three months.  At one point I cried for 3 days solid and all the way through one team meeting at work (although, luckily, it was a powerpoint presentation and the lights were off).  So where are we today and how have things improved?

Then Ash had no idea who our friends were when he met them out dog walking; now he not only recognises them but sometimes stops for a chat and remembers to tell me about it afterwards.

Then he couldn't remember where we were going on holiday or when;  now, although he still couldn't tell you when, he can remember where and is interested.

Then he would wake in a morning and lay rigid with fear at the …

The importance of watching and learning

There is always more than one way of looking at things and the way you react to what you notice directly affects your attitude I think.  A few weeks ago I reported that our social life was improving at a rate of knots and we went out, or had friends over, three times in three days all with excellent results.  Then this week Ash chose to stay at home twice while I went to things on my own.  I thought that maybe his appetite for socialising was in decline so put my shoulders back, my head up and went on my own thinking that independence is the way forward here.  Last night I had an email inviting the two of us out for a meal and Ash accepted with enthusiasm.  I thought about this and realised that if  I had taken as read (on recent evidence) that he no longer wanted to mix with others I might not have told him about this invitation and just assumed that I would go on my own.  What I actually think is that he doesn't cope with more than us and two other people.  If it's a small g…

Like minded people

At the weekend we were invited to a small party at a friend's house.  Ash can't cope with groups of people nowadays especially when he doesn't know everyone so he opted to stay at home.  I on the other hand have decided to grab social invitations with both hands while I still can and so went along on my own.  I didn't expect to see anyone I knew but assumed there would be someone to talk to so I went along hoping to have a nice time.  What happened was that I met a kindred spirit and that was so wonderful I've been smiling every since.  She too has been through rough times but has come out the other end smiling and with a determination to make the best of life.  She wasn't fazed by my attitude to our situation and seemed to understand instantly why I was being so positive.  A telling point came when she asked me about the dementia and then looked straight at me and said 'you need to be very independent to do this'.  Having been let down a few years ago …

Lyrics for right now

A while ago I wrote about crying while listening to the lyrics of Nilsson's 'Without You' and how I then got myself back on track with 'I Will Survive'.  That post prompted lots of sympathy and support from people who were worried about me.  The messages took me by surprise as I thought I was coping quite well but you often don't see what's right in front of you and afterwards I realised that I'd been working my way through a long black tunnel.  I'm fairly sure I'm through that tunnel and out the other side so have been thinking about songs again and wondering which was most appropriate for how I feel now.  At the very beginning it definitely was 'I will Survive' that held me together but now I feel it's time to move on at least for a while and the one that most suits my current mood is 'The Party Ain't Over Yet' by Status Quo.  I do feel there is a song for every point in your life and the one you choose at any given tim…

Once upon a time

As we get further and further into our new normal it becomes harder to remember how things used to be.  This isn't necessarily a bad thing as I know that acceptance of 'now' is what's needed but I've discovered that it doesn't hurt to sometimes be reminded of the person Ash used to be.  The first time I realised this was when I heard the answerphone message that he'd left most definitely before dementia started to take hold.  I hadn't listened to it for a very long time and at first it knocked me sideways but then I realised I was smiling.  He sounded just as I remembered - strong, enthusiastic about life and great fun.  I still listen to that message every so often but not as often as I did at first.  Now I have the picture in my head the need to listen isn't quite so strong.  Today something popped up on my fb page about how important it was to have an Aries in your life.  Ash's star sign is Aries and reading it brought back those memories all…

'Contented' dementia

You may have realised by now that thanks to the Contented Dementia Trust 'contented dementia' is my mantra and everything I do revolves around keeping Ash calm and relaxed.  This sounds as though it could be hard work and sometimes it is but it does mean that our lives now are 100% better than they were this time last year so I think it's worth it.  To do it successfully means that sometimes I have to think on my feet and I always need to have the question in my head 'is what was planned really important?'  Having this at the forefront of my thinking means that it's possible to be flexible and life is easier.  This morning I'd planned to go into the local town for some random shopping (wrapping paper, sausages and a newspaper) while stopping for coffee/tea and cheese scones in a cafe we like.  We would then head off to get the tree before spending the afternoon focused on Christmas decorations, card writing and present wrapping.  I have a need to link event…

Brexit has its uses

Who knew!!  Here's the rest of the world bored rigid with the subject of Brexit mainly because it's on the news every hour of every single day and most of us just want to switch off both mentally and physically.  This repetition has paid dividends in our house though as the more Ash hears it the more  he remembers which has actually led to sensible discussions on what's going on (neither of us knows), what will happen next (neither of us knows) and who do we believe (neither of us knows). So repetition is the key and although the message may be boring me to screaming point it's really nice to be able to have some sort of conversation about current affairs.  Now I just need to work out how to translate it into other parts of our world.   Another example of finding a key however random and using it to improve life around you.

Present buying made easy

Ash has always been pretty good on the present buying front.  There was a bit of a blip the year I'd dropped numerous hints about how it would be amazing to see Tina Turner in the last ever concert at Wembley before they knocked it down only to find a new walking jacket nestled in the wrapping paper on my birthday.  It was a great walking jacket but not quite the present I had in mind!  He made up for it though the year I came home on my birthday to find a soft top Ford Escort parked at the front of the house with a note attached saying 'it's yours, why not take it out for a drive'!  Usually he works out what I want, gets it and then buys me a little extra something as well.  This year things are different and I knew he'd be anxious so Jake and I hatched a plan.  He wouldn't be able to navigate shops on his own, it was no good taking him shopping as that would still involve crowds and decision making so we had to work out what would be more important to him - b…

Christmas will take some planning

Christmas looks set to be a little busy this year so, in order to keep things calm and relaxed for Ash, a certain amount of planning is going into it all.  That way we can do the things we normally do but with few opportunities for stress and/or anxiety to enter into the proceedings.  It will all take a certain amount of juggling though as my mum's coming to stay.  This in itself isn't a problem, we turn the heating up, create a cosy bedroom out of the office, get packets of porridge in for breakfast, move anything spicy to the back of the cupboard, increase the volume on the tv and there we are.  The difficulties come with combining the needs/wants of both my mum and Ash.  As you know he likes to watch endless episodes of The Chase but she hates the programme; he prefers to relax and do not much at all (other than Christmas Day and Boxing Day) where she likes to go out every day; his sense of taste is disappearing so he likes strong tasting food, her sense of taste however is…

Learning new skills

Until dementia entered our lives Ash was always the capable one in our relationship.  I never really needed to learn how to do anything new because he could do everything I needed him to.  He dealt with the personal finances and his business accounts; he renovated the house; he did the decorating; he mowed the lawn; he kept the garden weed free; he did the cooking; he did the grocery shopping; he organised camping trips; he kept the car in reasonable shape and amongst all of this he somehow found time to act as treasurer on a couple of local committees.  Then dementia crept up on us and these abilities began to fall by the wayside.  The worst thing was that Ash knew he was struggling to do all the things he used to do without thinking but had no idea why and I thought he was just losing interest in all he used to hold dear.  Since those heady and carefree days (for me at least) began to draw to a close I have had to learn an awful lot of new skills some (decorating springs to mind) ju…

Pride comes before a fall

I really should know better by now.   That feeling that things are too good to be true?  Well there it was.  We've been pottering along for what seems like weeks, everything well in our world and life really couldn't have been better when wham!  suddenly Ash is cross with me for being cross with him.  This came out of nowhere and the problem was that neither of us knew what particular event he was talking about.  Me because I genuinely hadn't been irritated, cross or annoyed about one single thing he'd done and him because he just knew it as a feeling but couldn't remember what had sparked it.  I know exactly what I should have done which was to remain calm, reassure him that all was fine and carry on as before but hindsight is a wonderful thing and what I actually did was get cross mainly because I've been putting so much effort into staying calm and relaxed that sometimes I'm quite exhausted by it all and it seemed that all that effort had been a complete…

Practical help not always wanted

When Jake was a baby I had a choice of two health visitors when I went to the clinic.  One was very pragmatic and gave straight to the point advice when I asked for it ie 'try this and if that doesn't work try this'.  The other was less straightforward saying things like 'well I'm not sure what to suggest but you could try such and such to see if that will work'.  I preferred the first version as it gave me something definite to work with.  My GP was also good at detecting my real underlying worries and would give equally practical instructions which all helped give me confidence where I had none.  Now I'm in another situation where sometimes I'm at a loss for how to handle things and I discover I thrive on being given practical tips and adapting them where necessary.  What I find interesting is that not everyone seems to want this.  I have joined yet another on-line forum (I will keep at it until I find one which gives me the practical and uplifting su…

The power of positivity

I work for a children's charity and we have been invited to display a Christmas Tree in a Festival of Lights.  This festival isn't local to the charity but is local to one of the projects I'm responsible for and we thought it would be a great way of celebrating the work we do there.  Today was the day for setting up and this involved a 100 mile round trip on my day off.  Last night I went to bed feeling slightly under pressure - Christmas is fast approaching, I still haven't finished the present buying, cards need buying/writing and I could do with the day just for me.  I woke in the night still thinking about this and the more I thought about how little time I had to do everything the harder it was to go back to sleep.  SUDDENLY I worked it all out.  If I set off a little earlier there would be time to call for a coffee and a croissant on the way (I don't 'need' caffeine so this isn't a requirement just something that would be a nice start to the day),…

Patience not always required

I read, and have written, a great deal about the importance of patience when living a life affected by dementia but have noticed recently that I have to bite my tongue far less frequently than I used to.  I can't remember the last time I left the room to avoid an argument or to extricate myself from one of those circular discussions that used to be a fact of life and I really don't remember any arguments breaking out in the middle of a shopping trip (which is in itself a small miracle) so I started to consider why this might be.  Jake will tell you that I am probably the least patient person he knows and I really did find it all such hard work in the beginning.  I have always been the first to fight my corner, to become exasperated when things didn't go my way and to feel uneasy whenever something wasn't done as I thought it should be.  The last few months however have seen life slowing down and seen me thinking before I speak or act and this has made so much differen…

Turning a view of life upside down

Called in to see a friend this morning and, over a cup of coffee, we chatted about what we'd been up to.  She talked about racing around everywhere and feeling generally exhausted while I sat in a comfy armchair, the sun shining through the window and thinking about how we can all, if we're not careful, spend our lives racing from pillar to post, trying to be everything to everybody.  I also smugly thought 'well that's not me' and truly believed it.  Then the friend asked what I'd been doing and I started to tell her about going to my mum's each week to take her to the 'posh luncheon club'.  I told her how I leave home at 8am, drive an hour to get to Mum's, take mum to her 'club' then do her shopping for the week before going back to her house to stock the fridge and cupboards, do the washing, get the washing dried and then go back to collect her, take her home and have a cup of tea with her before leaving and getting home around 6.30.  …

Learning to take life one hour at a time

I definitely like a plan but have also learnt over the past year to take life one day at a time.  Now that learning has developed and I have slowly realised that it really is best to take life one hour at a time.  This morning was a prime example.  Monday is the day I pick mum up and take her to the 'posh luncheon club' which involves me leaving home at 8am so I got up and took Ash his cup of tea before getting my breakfast and having a shower.  When I took his first cup of tea he was perfectly happy but when I went to get dressed I thought I'd treat him to a second cup and took that in to a completely different man, one who was lying rigid in bed with a look of despair on his face.  Apparently he was useless, no good for anything and there was no point in getting up.  Usually when these rare moods come on him I sit down and try to talk him round but this morning there wasn't time so I just assured him that he wasn't useless, that it was all in his head and that I …

Success rarely comes without commitment

Yet another really good meet-up with friends last night and the third in three days so we seem to be on a bit of a roll at the moment.  Things going pretty well in normal life too although there are always some moments when I kick myself for saying the wrong thing or doing something where I should know better.  I do  know though that I'm not perfect so don't beat myself up if I go wrong and am getting very quick at retrieving situations so feeling quite proud of myself really.  To get to where we are now however has taken hard work, planning, strategies and a determination I never knew I had.  I used to adhere to Quentin Crisp's theory that 'if at first you don't succeed maybe failure's your thing' and I have to say that it served me very well until this happened to us.  Now failure isn't an option.  If I try something and it doesn't work I have to start all over again; if I do something which triggers a bad reaction I need to backtrack faster than …

Not taking things personally

Out of our three back-to-back social events we had planned two have happened and have gone without a hitch.  The third is tonight so I'll let you know tomorrow how it went.  What I did notice was that Ash was really tired at the end of yesterday (a 2 hour drive there, 3 hour lunch and 2 hour drive back at the end of the day) and when we got home he was very grumpy.  We'd had a great time but I said one wrong thing and it was the end of the world.  I know by now though that there is always a reason for the outbursts, decided he was tired and left him to it.  He lit the fire, we settled down for the news followed by an episode of Pointless and, after a couple of hours, he was back to his normal self, making jokes, finding the answers to questions and generally happy.  This morning the alarm woke me which is never good so I lay for ages working out how to get my eyes to open.  Suddenly Ash snapped and asked me if I was ever going to make the tea.  In a previous life I would have …