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Showing posts from June, 2018

Mood swings

These aren't Ash's mood swings but mine.  By the end of every day I've usually figured everything out and all, or almost all, is right with the world.  However first thing in the morning is a different matter.  Since the day of his diagnosis Ash has been emotionally distant and nothing underlines this more than me reaching for his hand when we wake up only to find that he doesn't respond.  I am so used to being the centre of his world and the reason for his smiles that this is very disconcerting.  We got together a year before I took my 'O' levels (GSCEs for young things reading this) and the day my results came through the post had the potential for disaster.  As you may imagine I hadn't spent the year totally focused on school and only managed to scrape one B and one C.  My mum wasn't impressed.  Luckily Ash was around and spent the whole day lifting my spirits and making me laugh out loud (also luckily somehow the school was persuaded to let me move …

A new way of life

Two years ago I was working 50 hour weeks, dreading the 6.30am text saying that someone couldn't come into work.  When that happened I would have to leap out of bed, in the shower and out, breakfast and out of the door by 7.20.  Even when I went down to 3 days a week in that job it would still be the first thing I thought about when I woke up and the last thing I thought about before I went to sleep.  I never relaxed and, although I was never bored (my greatest fear), I was permanently exhausted both emotionally and physically.  We didn't go out in an evening because I was always too tired.  We didn't do anything at weekends because it made my time off go too quickly(!!!).  When I moved to my current job life improved so much I couldn't believe it.  I worked fewer hours, the responsibility was far less and the load lighter.  Now life has changed again.  I work 2 days a week (although if a job needs finishing I will finish it and if something extra is required I'll …

Feeling stronger

Yesterday I decided that, whenever I need to stay calm, I would close my eyes, count to 10 and think of somewhere wonderful we'd been on holiday.  But which one to begin with?  Holidays are my hobby and I'm either planning one, looking forward to one, enjoying one or coming home from one.  Sometimes two or more of these overlap!  I had an hour's journey home so lots of thinking time and settled on the 4 day camping trip to the Scilly Isles taken several years ago.  Things to remember?  Arriving at Penzance to find that Ash couldn't take his new camping stoves on the helicopter (recently bought and his pride and joy);  flying over the islands and being amazed at how blue the sea was (when you live on the east coast you're used to brown); the trip on the fishing boat from St Mary's to St Agnes where we were staying;  meeting the owner of the campsite and discovering (to my relief and Ash's disappointment) that we wouldn't have to carry all of our camping …

Keeping calm

A few months ago, before I started writing this blog, Jake and I went on a two day course to learn more about dementia.  This was through The Contented Dementia Trust, a truly inspiring small charity based in the Cotswolds, and was the most useful thing I think I've ever done.  For those of you who don't have boys, especially boys who went away to university at 18 and never really returned home, you will only be able to guess at how nice a time we had.  As Jake said, circumstances aside it was a really lovely two days.  Those two days however were also spent learning about what it feels like to have dementia and how those of us who don't have this disease can help make life better for everyone.  We can't change what's happening, we can only change how we deal with the situation and it's up to us to make sure those changes happen.  I have used lots of the strategies over the past 3 months and every one has made a difference.  Life isn't perfect however and t…

Choose your friends wisely

Today has not been good up to now (12.30pm).  I overslept having been awake in the night, Ash was then stressed because he woke before me which put him out of routine, then he didn't know what day it was and, when we'd got over all that, he left his beloved sunglasses at the petrol station on the way to Mum's.  I've phoned them and they looked but couldn't find them.  Result?  One very bad mood which I'm too tired to try and get him out of.  Once upon a time I would have felt really bad about it all but have realised I'm not perfect and sometimes life is just rubbish.

I now need something to focus on which will cheer me up and so I've been thinking about friends.  The vast majority of us have friends of one kind or another.  New ones, old ones, party friends, calming friends.  Lots and lots of different sorts.  I have friends I have known since primary school, friends who've been around since secondary school, those I met when we first got married a…

Don't put off until tomorrow ......

A friend was telling me last week about how her parents decided that when her Dad retired they were going to do all the things they hadn't had time to do before.  Her Dad died six weeks after he retired.

Over the years I have been told over and over that everyone thinks this kind of thing will never happen to them and that they have all the time in the world.  I certainly thought that and if I have one real regret it's the amount of time in the past that I spent at work.   It's now been brought home to me with brute force that life can change in an instant (or a diagnosis) so my advice is 'Go For it' whatever it might be.  'It' might be the trip of a lifetime, a weekend away, a bungee jump (although why would you want to do that?), a trip to see long lost friends or relatives.  Whatever it is do it sooner rather than later.  If my regret is spending too much time at work my satisfaction comes from knowing that we had some amazing holidays when we spent time…

Pros and cons of living with dementia

We're been on a fairly even keel recently.  Of course life has it's ups and downs but then that's the same for most people.  No-one's life is perfect even if it seems so from the outside.  Although I'm sure it won't last this sense of calm has made me think about how our lives have changed and whether it's better or worse.  I've said lots of times that I thought the world would come to an end when Ash was diagnosed with dementia but it didn't and it really isn't all bad so what have I lost and what have I got in return?

Things I miss are:
Being able to rely on him.  Ash would always do whatever needed doing.  He would fix things, collect things, organise things ....... now he does those things sometimes but I'm never quite sure what I'm going to come home to.
Coming home to a meal.  This wasn't always on the table as he quite often didn't know what time I would be home but it would at least be in the oven.  At one time he thought a…

Picnic in the park

I had a lovely time yesterday afternoon with 2 friends I was at school with (which means we known each other over 50 years).  You know the sort of friends you don't see or talk to for weeks on end but it doesn't matter?  Well that's the scenario we were looking at.  We met at 12.30, took a picnic to the park and stayed there until 5pm talking about not much at all really.  I got home to Ash still fretting about almost running out of food but I was so relaxed I just finished off the shopping list he'd started and we headed out to restock the cupboards.  Think some of my relaxed mood rubbed off on him as, by the time we got home, he was pretty relaxed too.  Lesson learnt from this is, once again, go with the flow and chill.  In those circumstances life often chills with you.

Social skills still intact

Yesterday we went to the funeral of a friend.  It was lovely.   Not in the least bit religious but very, very personal and so many friends were there.  At the get together afterwards we chatted to people and, to all intents and purposes, Ash was behaving 'normally'.  However, this friend had suffered from Vascular Dementia and he isn't stupid.  He knows he has a form of this disease even if he isn't inclined to discuss it and I'm sure the implications weren't lost on him.  We managed to stay a while but then he started to get snappy every time I made a comment.  I recognised the signs and suggested we leave.  The snappiness continued when we got home (a short walk through the village) and he then became convinced that we were running out of food and needed to go shopping immediately.  I agreed but persuaded him to wait 24 hours and suggested he took the dog for a walk while I got tea ready.  This strategy was a great success and, with peace restored, we had a l…

Ending yesterday on green

Yesterday I messed up Ash's feeling of well being when I got home, saw he'd put things in the skip that I wanted to keep and then stupidly mentioned them.  Luckily I managed to get everything back on track so well that, by the time he had picked up Fish and Chips for tea, he was able to use the hated new mobile to let me know he was on his way home.  We both then spent the rest of the evening feeling very pleased with ourselves albeit for different reasons.

I pondered this earlier while I was having breakfast and realised that in the not too distant past we would have had yet another row about the whole thing which wasn't conducive to feelings of well being in either of us.  This stopped me in my tracks as the revelation came that dementia is not the worst thing that could have happened to us.  On the day we were given the diagnosis I thought the world had come to an end but the saying 'if I'd known then what I know now .......' is alive and well in this house.…

The skip's arrived

Been out at work all day so came home to find that the skip, ordered on Monday, has arrived and Ash has spent the day cleaning out the first of the three sheds.  This was brilliant and he was very happy until I saw things in the skip that I didn't want throwing out.  Instead of keeping my mouth shut and retrieving them when he wasn't around I mentioned them and sent him into a spin.  One of these days I'll learn but for now am going to have to do a lot of what Penny at the Contented Dementia Trust calls 'flipping from red to green'.  If you want to know more about the technique I can recommend the book, if you want to know whether or not I can do it look here tomorrow.

One small victory

A small victory over dementia this morning and it might not seem much but each one makes me feel less as though I'm hanging on to my sanity by my fingertips and more as though I'm in control.  I woke up at 7am to find that Ash had already gone downstairs.  This didn't bode well as he wouldn't have figured out what day it was and would be stressing about what he had/hadn't got to do.  Sure enough when I joined him he'd spent 10 minutes trying to get the internet to work (what you actually have to do is bring the computer to life and leave it a while to think about what it wants to do - much like the rest of us) and he was in a really bad mood.  In a previous life I would have started the whole 'what's wrong with you? nothing.  yes there is.  no there isn't' scenario which would have made things 10 times worse and probably escalated into an argument.  This morning I asked if I could have a cup of tea and went back to bed.  When I got up half an ho…

Not disagreeing is very hard

Twice this morning I had to stop myself as I was about to disagree with something Ash said.  The first time was to do with the pressure in my tyres which he sorted out yesterday.  He wanted to check them again and I couldn't see the point.  Realised however that there was nothing to be gained from pointing out that he'd already solved the problem and all to be gained by letting him get on with it so agreed that it would be a good thing to do and he was happy.  Second time was when I said that I could hear buzzing coming from the loft and thought there might be a wasps nest up there.  I had mentioned this before but presented it as a new problem (which I was very proud of myself for remembering to do).  I was amazed when he pointed out I'd already told him but made out I'd forgotten and then he said he been up there and there was nothing so I must be imagining it.  I knew I wasn't but decided if he'd checked and not seen anything then it probably wasn't a pr…

Open Garden a success

As reported in the run up to this weekend, it was Open Gardens in the village today and once again this had the potential to be a disaster.  The garden needed to look good, the summer house still needed clearing out,  the veranda needed sweeping, the dog needed walking and then on top of all that people would be visiting and conversation would be required.  This was going to be very stressful .......  or was it?  I can tell you now that it all went perfectly.  All of the work was done before people started to arrive and  Ash managed to talk to everyone who came into our garden.  He wasn't fazed by the questions they asked and could tell them about the history of the house.  On top of all that a lady came in with a photo of the house in 1870.  Apparently her great grandmother had lived here.  We were all very excited and she let us take a copy of the photo which was one we hadn't ever seen before.  Then to finish off the day we went up to our newly refurbished village pub with …

lovely surprise

Open Gardens in the village tomorrow and, after two nights away at mum's, I expected to come home to weeds, long grass and lots of deadheading so that we looked reasonable for people to come and look round.  What did I find instead?  The roses were neat, the lawn was trim, the windows on the summer house had been cleaned (which means you can actually see the view) and there wasn't a weed in sight.  All of this without being asked and it's times like this that I question the diagnosis.  However I do know better so it's only for a moment that I indulge in that particular fantasy.

One other thing I've learnt over the past couple of days is that when Ash calls me to stress about how he doesn't know how to use his new phone (which is something that happens only when he's in a confused state) I just need to tell him that he doesn't really need one so I'll use it instead of the very old one I currently have.  He agrees, relaxes about it all and forgets tha…

A very busy day cont.........

Over the last twenty four hours I have discovered that my 89 year old mum bounces.  Yesterday she fell quite spectacularly and hit the pavement with a resounding thud then spent the next 10 hours either in an ambulance or in A & E.  I had visions of unearthing the walkers out of the garage (last used 3 years ago by my step dad) and was grateful that she had kept the stair lift serviced even though she doesn't normally use it.  The bruises were showing last night but she managed to walk up the stairs by herself and got ready for bed without help.  This morning she was aching and the bruises were a vibrant colour but she got dressed in her usual colour co-ordinated way and retraced the downwards steps to the bottom of the stairs without the use of that stair lift.  First thing this morning I organised for someone to come and discuss what help mum will need over the coming weeks.  This afternoon she's talking about meeting up with her friends for lunch tomorrow as usual.  I j…

A very, very busy day

Well today was full on.  Funeral this morning and then, while I was helping with teas, news that my mum had fallen.  Left everyone else doing the work and raced home to news that staff at her local cafe were waiting for the  paramedics to arrive.  Ended the day in A & E watching bruises come up everywhere however my mum bounces well and there were no bones broken so she was allowed to come home.  I'm having to stay the next couple of nights and this could have been a disaster but Ash was having a good day and still seems quite calm about the whole thing so we're going with the flow.  To recap Mum chose a good place to fall (outside the cafe surrounded by her friends), a good day to fall (Ash is very switched on at the moment) and a good country in which to fall (the staff at the local hospital were amazing and it's free).  All in all things could have been much worse.

playing the game

I realised today that what is getting me through all of this at the moment is treating dementia as something to be outwitted which makes it into a strategic game.  Dementia wants to make Ash feel inadequate so he needs things which bolster his self esteem (queue the new truck which is actually proving very useful even though I thought it wasn't really needed); dementia wants him to get confused so life needs to be simpler in order to give him time and space to get his thoughts in order (the best thing for this was the clock I bought which tells the date, day and time so he no longer needs to ask); dementia wants him to lose all of his skills so he needs jobs he can still do to find ways he can use those skills he still has (this is really useful - in the winter the house was decorated and now, in the summer, the garden is looking it's best for many years).  As I keep saying, life isn't all bad.

work life balance not working quite so well

Woke up at 6.30am and realised that I had an important work deadline looming ie 10am.  All of those plans around keeping things calm in a morning so that Ash doesn't get anxious went completely out of the window as I leapt out of bed, raced downstairs and logged on to the work system only to discover that today was Tuesday, not Monday as I'd thought, and I had missed the deadline by almost 24 hours.  Am obviously overdoing the calm and relaxed mode!  With heart still thumping I made a cup of tea, took it back to bed and then sat and worked out a way round it all.  Must have done a decent job of it as Ash didn't even notice there was anything amiss. 

On this theme a few weeks ago I wrote about him asking me several times a day if I had slept well the night before and that eventually I said yes and, because he didn't have to worry about me anymore, he stopped asking.  I am currently rereading 'Contented Dementia' by Oliver James (Can highly recommend it and think…

Still making life simpler

Now on fibre optic broadband which will be interesting.  The lady on the phone offered it for free, just an upgrade to our existing service but no extra cost involved so a bit of a no-brainer.   She promised speeds of up to 50mb and seemed surprised by my scepticism but obviously doesn't live in rural Lincolnshire.  Anyway the new hub arrived and Ash (to everyone's great satisfaction) got it all sorted so we are up and running.  Speeds are no different than before but, as my expectations were beyond low in the first place, that's ok.  Am sure my friend at the phone company will be disappointed when I tell her but it will be the beginning of a new learning curve for her.  The problem came this morning when I made the mistake of saying that we now needed to connect the two wireless extensions to the new hub.  As we live in a cottage edging towards 200 years old without the extensions we don't get wireless connection anywhere other than the office and kitchen.  Unfortunat…

finding solutions to everyday problems

Ash is in charge of drawing up the weekly shopping list, working his way through the cupboards as he does it and writing down what's missing.  For the past 3 weeks he has added floor cleaner to the list and each week I've told him that we have several bottles already.  He has then opened the cupboard under the sink (where it has never been kept) and shown me that there isn't any.  This is followed by me going to the cupboard where we do keep it and showing him all the bottles stored there.  This week we went through the usual process but after showing him we had them I moved them so that the floor cleaner now lives in the cupboard under the sink.  I still can't quite believe how many weeks it took me to come up with this solution.  As I said a few days ago, I'm learning ...... but very, very slowly.

Life is a rollercoaster ......

Had an up and down kind of week with Ash's moods either riding high or sinking low.  Most of the time now though I can catch things and rescue it all before he hits rock bottom and this week has made me think about all of that.  This morning he was in such a good mood that I was lulled into a false sense of security and started listing all the things that he could do while I was out.  I suddenly realised what I was doing and changed the subject (which meant I ended up wittering about how nice the garden looked) and managed to avert a crisis which gave me a great deal of satisfaction.  I hear lots of people talking about 'walking on eggshells' when dealing with the mood swings of someone who has dementia and I certainly know that feeling however I find if I can focus on the triggers for the bad mood I can try and make sure to avoid it in the future.  I'm not a miracle worker and can't manage it all the time but when I successfully divert or rescue a situation it doe…

I'm learning, not as fast as I'd like, but learning nonetheless

We both went to my mum's yesterday, Ash to mow her field and me to take her to the opticians and to stock her cupboards.  The plan was to go in separate vehicles so Ash could come home as soon as he'd finished mowing but, before we set off, I had to collect my car from the workshop in the village where it was having new tyres fitted.  I walked up to the workshop but before I left we discussed Ash following me to see if my car was ready.  If it wasn't then I was going to join him in the truck and use it to take mum out (getting her up and into it would have been a sight to be seen I promise).  He must have left the drive approximately 5 minutes after me but didn't appear at the workshop at all and I decided that he obviously hadn't retained any information from our conversation but had driven straight out of the village.  Luckily my car was ready so I set off in his wake.  Now at one time I would have rung to find out why he hadn't waited to see if the car was r…

Birthdays

My mum is 89.  I knew this but hadn't followed the knowledge through to the obvious conclusion that this means next April she is 90.  Only a chance remark by a friend on the planning going in to his mum's 90th birthday celebrations made me realise that maybe I wasn't totally focused on this momentous event.  Anyway my mum may have memory problems but, contrary to what Ash has always thought, she's switched on in every other way so I thought I'd better find out what she wanted to do.  The conversation went like this:

Me: what would you like to do for your birthday next year?
Mum: Oh that's ages away we don't have to think about it yet.
Me:  But you're 90 which is special so maybe we should start planning.
Mum:  Well I don't want everyone to know I'm 90.
Me: So you don't want a big party then?
Mum: NO ABSOLUTELY NOT!!!

At least that's one less thing for me to think about although it won't go totally unmarked regardless of what she thin…

Ask and (if they can) people will help

I'm always saying that people will help if you tell them what you need, it's only difficult when they don't know what to do.  A few weeks ago I booked a day out in London with friends to take place this Sunday as (and you may not know this) it's Open Gardens weekend across the city.  I'm looking forward to immersing myself in the rarefied surroundings of Belgravia and aspiring to the sort of garden I will never have for myself.  When I organised it all we were still in the post holiday feelgood mood and I didn't actually give Ash a thought.  The past two days have been difficult however and, as I'll be leaving home at 7.30am and not getting back until 9pm at the earliest, I've started to worry about how he'll cope on his own.  Thought and thought about this and remembered that one of his ex work colleagues had said if I ever needed anything to let him know.  I contacted him and now, even though it's a Sunday and I'm sure he had other things …

Confusion reigns

It's quite amazing how little it takes to send Ash's life off the rails.  This morning everything was fine.  My car had to go into the garage to be looked at and this afternoon I needed to go on a visit for work so Ash was going to take me and wait in his truck until I'd finished.  I then worked out that it would be better for the car to go in tomorrow so sorted that out and told him I could get myself there thinking that would make his life easier.  He immediately went into a tailspin and lost track of absolutely everything that he'd planned to do.  By the time I went out in the middle of the afternoon things seemed to have settled down however so I wasn't concerned BUT got back to find him in a confused state worrying about not being able to use his (new) phone to ring me and pacing up and down panicking about everything and nothing.  I realise now that it would have been much easier to have left the car where it was and be chauffeured.  One of these days I might…

Deflated for a while

Had two opposing experiences with a forum today.  The first was from someone who wanted to start a conversation with me.  Very positive, similar situation (but for much longer) and someone I feel I would like to get to know.  The second replied to a positive comment I had put on there and cut me down with one sentence leaving me feeling totally deflated.   I have now picked myself up, dusted myself down and worked out that I can succumb to railing at the world and complaining that my life isn't working out as expected or I can play the hand we've been dealt and make the best of everything.  Guess which one I'm going with!  Interesting though how people's responses can have such an impact.

great end to yesterday

After the trials and tribulations of yesterday morning (and a good chunk of the afternoon) we went to friends last night for supper.  Haven't seen them for ages and, as at one point I was all ready to cancel on them thinking Ash wouldn't cope, I wasn't sure how it would turn out.  Well I need to tell you that we had such a good time.  Ash was relaxed and chatty, took part in the conversation and laughed along with everyone else.  Once again what had promised to be a rubbish day ended on a high.  He even remembered where we'd been when we got home which is always a bonus.

Today we've been out in the garden which meant he could fill his 'new' truck (also his pride and joy, 2nd only to Archie the 4yr old grandson) with green waste to take to the tip.  This in turn meant he could feel smugly superior to those people in the queue in front of him who don't go very often and don't know how it works which boosted his self esteem no end.

All in all think we&…

Unsettled is the word of the day.

Had a slightly difficult start to the day which carried on through a shopping trip and into weeding/planting in the garden.  After the past few weeks of being on a high and thinking I'd cracked it (I really should have known better) it felt as though we were back to square one.  However I had a look on one of the forums I've joined and someone on there was also having problems but was determined to look at all the good in her life.  I can't begin to tell you how much this lightened my mood and just proved that I need to focus on the positive as much as possible.  There really is too much negativity around us and I need to remember that when Ash is unsettled he can't help it but I can.  I went back out into the garden with a smile on my face and the world righted itself.

On  lighter note I took my mum to the surgery on Thursday to have her stitches removed and was part of the following conversation:

Nurse:  So how old are you Mrs Palmer?
Mum (looking at me):  How old am…

Difficult circumstances are not exclusive

In the past ten days three friends have told me about rubbish things that are going on in their lives and it started me thinking.  Sometimes, when we're in the depths of despair, it's all too easy to think that bad things are only happening to us and that no-one else can possibly know how awful we're feeling.  Actually bad things happen to everyone so people might not be experiencing your awful but they will know the feeling.  One of the forums I've visited seems to be full of people complaining that no-one understands and that people make promises they don't keep but all I have found is sympathy, support and willingness to help if I say what's needed.  Luckily my three friends are all strong people (or so I think but what do we really know about anyone) and understand all of this.   They have all been there for me recently so now it's my turn but I need to remember to ask what's needed as that's the best way, I think, to be effective.

Two years ago…