Showing posts from May, 2019

Events as a lesson to be learned

This morning I was congratulating myself on how well the new strategy of not speaking first thing in the morning was working.  I've managed to remain silent until Ash is ready for conversation for the past few days and as a result he's started each day in a much calmer frame of mind so I was feeling very proud of my efforts (and those of you who know me will appreciate what an effort it's been).  Unfortunately today went downhill from that point on.  It was a day of confusion and angst right up until tonight and all because there wasn't enough detail in the diary Ash keeps.  All was sorted before bed time but now I'm waiting with baited breath to see if it was a blip or whether this is another slip down the slope of dementia.  If it's the former then we're ok for a bit longer but if the latter then lessons must be learned and more detail it will have to be so watch this space.

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Moments to savour

This weekend has been full of moments to savour and all the more so because life bore some semblance of normality.  To begin with Ash's DIY skills, which I thought were consigned to history, were resurrected as I got the summer house (AKA The Shed) ready for the months to come.  I've discovered over the past year and a bit that it's best not to ask for things to be done as it only puts Ash under pressure and that's always when life begins to unravel so instead I just do them myself.  This time I needed plaques and pictures hanging on the walls of The Shed so on Sunday I found some tacks, asked for a hammer and starting banging.  He came out to see what I was doing, obviously decided I wasn't doing it properly and took over.  This made me smile as it was almost history repeating itself.  Many years ago when we bought our first house I was replacing a door knob when Ash came in and started to tell me where I was going wrong.  I handed him the screwdriver and left him…

Conquering life

Saw this quote on fb just now and thought it deserved a comment or two.  When dementia entered our lives the first reaction to hit both of us was shock.  Ash had much more of an idea that something was seriously wrong than I did, he had after all spent the past few months/years crying out 'what's wrong with me?'  My reaction had been to bury my head in the sand and assume that, if there was something wrong, it could be fixed.  Life isn't always like that though.  Things happen which can't be fixed and we have to work out what to do about it.  Do we sit and feel sorry for ourselves or do we accept what's happening to us and get on with our lives?   Or, as this image suggests, do we take life by the horns and say 'I deserve more and I'm going to go out there and get it'?  This really is up to each and every one of us and I've decided to go with the latter.  As you'll have noticed I don't manage it every day but somehow I survive the bad da…

Friends, friends, friends

Another two days without posting but this time for a very different reason.  The past couple of days have been spent with friends.  Thursday was out learning about gardens and history with someone I have been friends with for 34 years and knows far more about both than I ever will and yesterday with two friends I have known since before Ash (and there aren't many of those around).  All of my friends are lovely and supportive and both days took me out of myself but there's something about those who've known you since before you became an awkward teenager, and then a grown-up, that is particularly comfortable.  You can sit in silence if you want to, you know when to laugh and when to keep quiet and there is no hiding, no pretending and no need to say if you need help.  They seem to know instinctively what I'm thinking and are always there if I need them.  They laugh at me as well as with me too which is no bad thing, in fact it really isn't possible to take myself se…

There's a new mower in town

The past few days/weeks for some reason have been difficult not because of anything new that Ash has or hasn't done but more to do with my state of mind and that can't go on.  I have now given myself yet another shake, pulled myself together and decided that life is for living not for moping.  I've realised that I need more and different strategies one of which is to stay quiet first thing in a morning.  I find this really difficult as I used to start  my days by telling him what I had planned for the hours ahead.  This was for me of course, he didn't really need to know and still doesn't.  Not only that but the more I talk the more confused he gets and I've noticed that if I lie quietly until he's ready to talk we start the day off much better.  You might think this is obvious and wonder why I didn't see it before but, as someone said a couple of days ago, sometimes we get so bogged down that we can't see the wood for the trees.  I think I've b…

An emotional rollercoaster

Yesterday was lovely.  We loaded two bookcases (discarded as I gradually turn my office into a sanctuary just for me) into the back of Ash's truck and headed over to Jake's collecting a lawn mower from mum's on the way.  The whole afternoon went off without incident.  We had lunch, went for a walk with the 5 year old, installed the book cases, mowed the lawn and generally relaxed and laughed just like old times.  Then we reloaded the truck with stuff Jake needed to be rid of (and Ash had said he would take to our local tip) and headed home. Got home, had a cup of tea in front of the fire and then Ash went outside returning a few minutes later looking puzzled.  What, he asked, were all those bags doing in the back of the truck?  where had they come from?  was someone collecting them?  and for a few minutes a wave of despair washed over me once again.  The despair didn't last I hasten to add but sometimes I just can't help it.  However despair doesn't help anyone…

One of those days

Yesterday was one of those days that made me question everything I thought I knew about us.  Did we laugh together? did we share glances across a crowded room? did Ash think I was amazing? was he always there for me?  So many things I thought to be true but maybe they weren't, maybe I imagined every bit of our life together and built it up to be something it wasn't.  Then, after an exhausting day when I felt emotionally battered and bruised, I remembered our 25th wedding anniversary.  Our honeymoon was spent on a campsite in the south of France.  One of those where the tent is already up and we went by coach which took hours and hours.  I was a month away from my 22nd birthday, Ash was 23 and we had our lives before us.  After 25 years of marriage, and at least 5 years before dementia began to rear it's ugly head, we went back to the same place but this time we flew to Nice, picked up a soft top hire car and drove to the village to stay in a hotel.  Our room opened up onto…

The benefits of writing this blog

I've been threatening for years to write a book and several times have sat down to begin but then been overwhelmed by the task in hand.  I have the attention span of a gnat and, although common sense told me otherwise, a whole book felt as though I would have to sit for hours and hours writing solidly until it was finished.  This blog then is perfect for me.  I can sit and write for five or ten minutes, giving a snapshot of what's going on in my life, and then move away leaving the next short chapter until tomorrow.  There are other benefits as well though as I'm gradually discovering.  It hones my writing skills, it improves my grammar, it (mostly) helps me pay attention to the positive, it keeps my friends up to speed with what's happening which in turn means there's more time to discuss what's going on in their lives rather than focusing on my issues but, more important than all of those things, it has put me in touch with new people who are living through i…

Uncertainty rules

What I find really difficult about this life we're leading is the total uncertainty of how our days are going to go.  We can start the day heading in one direction and suddenly, without warning, swerve onto a completely different road.  Every morning I wake up and carefully watch to see how we're going to start and then just try to follow the signals but sometimes I get it so wrong I'm left in complete confusion as to what happened.  What's even more difficult is that these experiences usually follow a brilliant day where everything seemed on track.  Yesterday was one of those days and this morning was one of those mornings.  We started off ok but I was fooled into thinking a chance remark which led to a short discussion was heading down a conversation route.  How silly of me.  I really need to remember that there are no conversation routes nowadays, only cul de sacs.  Soon we were in the middle of some heated (on Ash's part) 'discussion' on when we were go…

Reducing the challenges

I may be generalising here but I think I speak for the vast majority when I say that when the diagnosis of 'dementia' in any of it's various forms is delivered we truly think our world has come to an end.  If we're very lucky we get support from the outset but mostly we flounder in a new world where it feels as though the ground is forever shifting beneath our feet.  Everything we thought we knew about our lives is no longer true and all our plans for the future disappear in front of our very eyes.  Then someone comes along who assures us that it's possible to 'live well with dementia' and that makes us stop and think, to re-evaluate all over again.  Life can be different and, obviously, if we can 'live well with dementia' all will be right in our world again.  Now there may be some people for whom 'living well with dementia' has turned out to be true.  Maybe from the day they were told it was possible their life has been perfect but what do…

A new regime

Thought you might like to hear that the running continues and, following our trip to Sherwood Forest, I've started running through the wood near our house.  It's not very big and there's only one track through it but there's definitely more to look at than running up and down the lane.  The surroundings also take my mind off the fact that the lovely run down the wood is followed by a slightly more strenuous run back up the track.  As in Sherwood Forest for 'up' read 'gentle slope' but when you're still trying to fight your way to some sort of fitness any 'up' feels very steep.  Anyway I have a wedding in 6 weeks time as my goal for looking sleek, slim(ish), fit and suntanned so it's very lucky that not only is Ash leaving all the gardening to me but I've also noticed that, although he thinks he walks miles with the dog every day, the reality is that it's one 20 minute walk in a morning.  Max is a spaniel and needs lots more exerc…


Conversations in this house sometimes take on a surreal tone nowadays.  Take this example from last night when we were watching The Chase.

Question: (actually can't remember what it was, sorry)
Me: (correct answer)
Ash:  I think we've seen this one before.
Me: We have, it was on last night.
Ash:  thought so.

10 mins later:
Question: (again can't remember what it was, this memory thing is catching)
Me: (Correct answer)
Ash:  How did you know that?
Me: I remembered from last night.
Ash: Was it on last night then?

As I said a few days ago sometimes I think I've joined Alice in Wonderland.

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'Living with' dementia

The collective wisdom around dementia is that the term 'living with dementia' should refer absolutely and solely to the person with the diagnosis but those of us sharing that life also 'live with dementia' on a daily basis and perhaps that should be recognised more than it is.  I don't want to be controversial but our lives have also been turned upside down, we too are confused by what's happening to us and to our relationships (not only with our partner who has that all important diagnosis but also with friends and relatives), we never quite know whether we're going to understand events on any given day, we never know when we wake up whether it's going to be a good day or a bad day.  In other words confusion reigns in our lives too and, if we are totally committed as most of us are, there is no escape.  Someone said yesterday that, although her husband shouldn't be defined by his dementia, as a couple they are and I too find that.  We can no longer…

The benefits and challenges of being at home more

Just coming to the end of my second (almost) work-free week and have been thinking about how it's all going.  Is it what I expected?  Has life become easier?  Is Ash any better?  Lots of questions but not quite so many answers and certainly not the ones I wanted.  So where are we now?  One of the things I thought would happen is that Ash's dementia would instantly improve because I would be at home to make life easier for him.  What has actually happened is that I've had time to notice that his dementia is more advanced than I realised.  The difficulties aren't caused by spending too much time alone and they're not lessened by me being around more.  What I think has happened over the last year is that we've both been kidding ourselves and this has been a little scary to come to terms with.  We've both been telling ourselves that if only life was a little less hectic and a little more stable, a little less busy and a little more relaxed then everything would…

All those 'last times'

I discovered last night that the non mowing of sections of the lawn yesterday had more of an effect than I realised.  To be perfectly honest it played on my mind all evening and then I found it was all I could think about when I went to bed.  I couldn't understand it, it was after all only two small patches of grass that were now slightly longer than the rest so why did it bother me so much?  I've thought and thought about this and decided it's because that particular change in Ash is so noticeable.  Other parts of his personality and being have disappeared almost in a drip-feed kind of way.  The Ash I've known and loved for all these years is melting away so slowly it's only when I look back that I realise how much of him is missing and which bits are gone.  With the grass mowing however we've had a long gap called winter so this missing part hasn't been noticeable until now.  I've just read an on-line article about 'the last time' where we wer…

Biting my tongue

Now that I'm in almost total retirement Ash and I are spending more time together, something we're both still adjusting to.  Today I suggested gently that perhaps the lawn needed mowing and  that in itself shows how he's changed.  Once upon a time the lawn was his pride and joy, it was mown to within an inch of its life and this was done weekly as a minimum but sometimes more.  Now it grows and grows until I can't stand it any longer and have to make a comment so today was that day.  The lawn at the back is divided in three with a fourth section at the front of the house and what I found very weird is that he mowed two sections at the back but not the third and also left the piece at the front.  When I plucked up courage to ask if he was leaving the unmown bits until tomorrow he gently pointed out that once I'd had time to settle down I would realise there was no hurry to do anything.  I bit my tongue and smiled sweetly!  This is most definitely not the man I have …

Don't look back?

Those of us living a life affected by dementia are told never to look back, always to live in the moment, never to plan for the future and mostly I manage this.  I listen to those who say there's nothing to be gained from gazing into the past and I genuinely enjoy most of what's happening now but it's that word 'never' that's difficult and, as I've realised this morning, sometimes looking back is very useful indeed.  When you're in the middle of all of this it's very easy to think that this is all you've known, that what you thought you had was all in the mind and that you had deluded yourself that the person you fell in love with ever really existed.  I'm in the middle of a massive clear out, a proper 'spring clean' and this morning I discovered some photos from a family holiday to Santorini in 2004.  Jake had taken two friends with him and we'd rented two studio apartments, one for the boys and one for us.  I thought I'd re…

The joys(?) of housework

The question mark in the title of today's blog is there because I would never in a million years have thought of or described housework as joyous in any way, shape or form.  It used to be something Ash and I did together when things became desperate.  Maybe we couldn't find space for a plate on the kitchen table or we looked at Jake's knees when he was crawling and realised that the floor needed washing or we couldn't open the door on his playroom and realised that something had to be done.  Admittedly as we all grew up (Ash, Jake and me) things did get better and on the surface the house usually looked relatively clean and tidy and no-one ever got food poisoning but still it wasn't ever something either of us looked forward to.  As mentioned at the beginning Ash and I used to share it then he got to the point where he would hoover and mop if I asked, then he would hoover or mop and recently he's panicked if asked to do anything in the house at all.  As you'…

Living in a parallel world

Sometimes I think I know how Alice felt in Wonderland and just now was one of those moments.  Jake and I, along with the 5 year old, went to see my Mum today.  She's safely ensconced in her new care home (the one with the pub and the cinema) and each time I've been to see her I've had to interrupt a conversation she's having with someone.  Today was no different, she was chatting away with a broad smile on her face and all was right in her world.  We went through to the 'pub' and got toys out for the 5 year old then settled back ready for her to tell us what she's been doing.  The first thing she said was 'Can you book me back into that place I've just left, it's boring here and there's no-one to talk to'!  Luckily I'd spoken to one of the girls on the way in and heard that Mum had been out for coffee (Costa and Cafe Nero) three times in the ten days she's been there and had also been into town  so there's little chance she&#…

Stepping out of a comfort zone

I don't know about the rest of you but I hate being out of my comfort zone.  I like what I know and I like to feel safe.  I don't like heights, I hate having my head underwater, I don't like the feeling of speed, I don't like not speaking a language if I'm travelling etc. etc. so I have no idea how I managed all those years ago to fall in love with someone whose favourite form of transport was a motorbike, who discovered windsurfing as a passion, who would head down the nearest black piste on skis even if it had been years since he'd hit the slopes, who learnt how to water ski on holiday in the Caribbean then went from Comino over to Gozo six years later without having practiced in between times, who would order something he couldn't translate from a French menu just to see what it was ..... the list is endless.  As you can see in many ways we were completely incompatible but for some reason it worked and the best part about it all was that, when it came to…

Short break cut a little shorter

Last night I was counting the cabin in the woods as one of my more successful ideas.  We'd been for long walks, the dog was more than happy, the cabin was beautiful and we were having such a nice time.  This morning I fell into the trap of thinking life was normal so decided to lie in and listen to my favourite DJ after Ash got up.  BIG mistake and one I would hate you to make which is the only reason I'm telling you all this.  By staying upstairs and leaving Ash on his own there was far too much time for him to think, to panic and to wish he was at home.  He completely forgot how, less than 12 hours earlier, he was saying what a great time we were having and how he couldn't wait to return in October.  Now apparently he couldn't find anything, he didn't know where he was and everything was too complicated.  I quickly agreed and suggested we had one last walk then pack up and go home.  I also tried my best to stay calm but underneath it all I was kicking myself.  I …

Giving up is not an option

I've been running in the forest which is very exciting (although when I say 'running' I actually mean 'gentle jogging' but still it's exercise).  Since I went over on my ankle the running has been a little sporadic.  I'd reached run 2 on week 6 and was feeling very pleased with myself but then took a 2 week break to get over the trip then decided to start at the beginning of the programme which was ok the first run but then a little boring, then the app didn't work, then I got onto week 3, then the app didn't work and I became quite dispirited.  I may have said this before but if I can't do something easily my default position has usually been to give up and for a while the decision hung in the balance so this week was my 'begin again' chance, the ideal opportunity to put on the trainers and get out there.  You may remember that I began when we were in Florida where it was sunny and warm then we came home and running without looking out …