Showing posts from July, 2018

Home as a place of calm

Slightly difficult day at work today including a shouting parent, a stroppy teenage volunteer and an agitated teenager whose carers were late collecting him.  It was really lovely then to come home to a (relatively) clean house.  Without instruction Ash had realised that the floors needed hoovering and mopping and just got on with it.  This was great as I really haven't had time to do it myself and quite often he just doesn't notice.  This isn't a dementia thing you understand just that we could be knee deep in dog hairs and he still wouldn't see a need to do anything about it.  I have also recently been testing Quentin Crisp's theory that after four years the dust doesn't get any thicker so I had a quick look to see if Ash had interfered with my experiment.  He hadn't but for some reason I don't feel relieved and may have to tackle it myself at the weekend.

To camp or not to camp ......

Most people with any knowledge of dementia will tell you that those affected by it are better off at home in familiar surroundings but we have always gone on holiday and often to somewhere just slightly unusual.  Those of you who are following this story will have read about Osea Island off the coast of Essex; Morroch Bay on the west coast of Scotland; Comino, the rock in the Mediterranean; the citadel in Corsica etc.  There were lots of amazing holidays in quirky destinations and the trip to Lanzarote in May made me realise that Ash is at home with travelling.  He can cope with being out of routine because for him being on holiday is part of our routine.  However we live in a slightly altered world nowadays and whereas I would normally have our next holiday booked these aren't normal times and I can no longer plan anything too far in advance.  However I've been observing and thinking ever since we got home in May and I think I have an idea.  When Jake was little we took off ev

A small change leads to great confusion

It really is amazing what a tiny change to routine can make to our lives.  Usually Ash takes Max the spaniel on a short walk in the morning and a long walk in the afternoon.  Today we were both invited to a 50th birthday party and were leaving Max at home.  My mistake was to ask Ash to take the dog on his long walk this morning.  He went off quite happily but had a panic attack half way round as he couldn't remember what time we were leaving and, consequently, what time he needed to be back from the walk.  By the time he got home he was making no sense at all until I had the bright idea of telling him that he needn't come to the party.  As soon as I said that the pressure was off and he was back to his old self again.  He didn't come with me and for a while I was a little sad about that then I realised that, even before he was ill, he was never a social butterfly.  He wouldn't have known many people and certainly no-one well enough to have a conversation with so he was

New facebook group

Those who have followed this from the beginning or even those of you who have read the 'about me' page may remember that the reason I started the blog was because I couldn't find anywhere else that focused on the positive side of life with dementia.  There are forums out there where people can tell of their experiences, ask questions and find people to support them which is great but I found too many of them told very scary stories and/or weren't interested in those positives.  At the time I felt I was living my own very scary story and didn't really want to hear about those of others.  Instead I wanted to know that things might work out ok and that a diagnosis of dementia wasn't the end of the world so I searched and searched until, in the end, I realised that if that's what I wanted that's what I was going to have to produce.  I now know of at least one other person who has found this approach incredibly helpful and she and I email everyday which is he

Grocery shopping made easier

Not sure grocery shopping can ever be easy.  Too many variants - weather, number of holiday makers, traffic, stock missing from the shelf etc. etc.  however it's certainly easier than it was.  Before dementia, in fact before the discovery of Contented Dementia Trust, a trip to the supermarket would involve Ash drawing up an incomplete list, trying to get everything at one supermarket and then having to decide which other one to visit to get all the things not available at the first, a row because I knew where everything was and didn't see any reason to visit aisles we didn't need and me getting frustrated when going through the self checkout too quickly for the bar codes to register.  The Contented Dementia course didn't tell me how to go shopping, obviously, but it did show me that I needed to change the way I viewed our whole situation which in turn meant I changed the way we did things.  Now grocery shopping takes place on a Thursday evening, Friday or Saturday (any

Going back in time

Now at the end of the first of 4 weeks working long days, 50 miles from home.  This week it's been 4 days and from now on 3 days a week.  I said yesterday that I was worried how Ash would cope with me being out so much and had almost organised people to call in on him each day but didn't get sorted in time so thought I'd see how it went and it actually went really, really well.  This puzzled me the first few days but then I realised that this is the life he knows.  Those of you who have been following this will know that this week and the next 3 weeks I'm running a holiday playscheme for children with complex needs.  I leave home at 7.30am and get back at 5pm and when I'm home all I talk about is what happened during the day.  The thing is that from 1993 to 2016, almost without a break, I ran child care settings usually leaving home at 7.30 am and getting back at 6pm.  You might see some similarities there and you'd be right so this is actually the life Ash know

Matching mugs and matching pegs

I've spent the last two days managing a holiday club for children with complex needs and have found, as in previous years, that there's nothing like being in the company of 25 children, none of whom can do a single thing for themselves, to make you appreciate what you have.  These children and young people are amazing and I have come home at the end of each day full of admiration for them and their parents.  Not only that but being there absorbs me so completely that there is no time for wondering if Ash is coping (he is), whether he's managed to hang matching mugs on the mug rack (he hasn't), whether he's remembered to hang the washing out (he has), whether he used matching pegs (I know, I know, it's just one of my quirks that he's always refused to indulge so he hasn't) and I'm ready to go all over again tomorrow.  When I knew this was coming up I was a little concerned as I would be working 3 days a week for 4 weeks and 50 miles from home so not n

an anniversary

42 years today since Ash followed my school bus home and asked me out.  It was the last day of term when I'd just finished 4th year (year 10 if that makes more sense to you) and it/he wasn't quite what my mum had planned for me.  She dreamed of me marrying a local farmer's son (no-one in particular, just someone with plenty of money who would keep me in the style to which she would like me to become accustomed) and she had assumed it would happen when I was thirty.  Instead, at not quite sixteen, I came home with a police cadet from a local council estate who rode a motorbike.  Forty two years later she can see I made the right choice but at the time I think it was a little traumatic for her.  None of her objections made the slightest difference to me.  Ash made me laugh, looked after me and made sure I was happy.  What not to love?  Even now, on a good day, he can still make me laugh, can remember to ask me if I've had a good day (although he doesn't remember my an

The summer holidays are here

....... and I do mean here!  We live 10 miles inland from the east coast and the traffic is getting busier by the day.  Yesterday Ash decided to go to the tip which is almost his favourite activity.  I've said that I'm getting more interested in gardening but in reality my 'expertise' extends to snipping with secateurs which means that I am continually filling the green bin.  Last week it was emptied on Wednesday and by Thursday night it was full again so something had to be done.  What I didn't expect however was that Ash would notice it was full and realise the trip to the tip was necessary.  Without saying anything he filled the back of his truck and then announced where he was going.  What he had forgotten was that it was the first weekend of the summer holidays in the middle of a heatwave.  Lots of traffic, lots of people and few brain cells in evidence.  None of this threw him however so the trip was a success and he had something to moan about afterwards whic

Unnerving kind of day

Today I learnt that I'm not everyone's cup of tea (although I think I knew that already).   Someone took exception to the positive tone of the blog and decided it wasn't helping her one little bit.  I think she felt my life was a little too perfect and she judged me on what she read which isn't the best way forward by any means.  The problem is that people only see what they want to see.  My life isn't perfect by any means and it would be so easy to sit and feel sorry for myself.  Ash isn't the man he was, he isn't a part of me the way he used to be and our life isn't headed in the direction I always thought it would but what I don't understand is why it's better to dwell on all of that.  I have been told that forums are wonderful as they give you a chance to rant but what good does that do?  I can rant to my heart's content but nothing will change other than we will both be miserable.  I don't feel better if I rant, I feel better if I l

Moving forward

When you first get a diagnosis containing that dreaded word 'dementia' you feel as though everything you know and love about your life is about to end.  All I knew was that everyone with dementia goes into a steady decline, enters a nursing home and dies, all within a short space of time.  This I have discovered, in our case at least, does not have to be the outcome.  Last December and in the months leading up to that awful day Ash was declining steadily.  He didn't make conversation, couldn't think for himself and was unable to make a decision so you can see why I, and many of those around us, thought that the diagnosis was the beginning of the end.  The three months that followed were equally awful as we both tried to come to terms with what was happening to us and almost the worst thing of all was the day I completed the form to send to the DVLA and asked Ash to sign it.  I really thought he might lose his license as his driving was becoming unpredictable and, as we

False memories

A friend said yesterday that one of the things she misses is being able to have any sort of meaningful conversation with her husband who has dementia.  I agreed with this but realised many hours later (ie today) that Ash was never one for real meaningful conversations, he was just happy to enjoy life and go with the flow.  He liked, sometimes, to discuss plans for the future but never too far ahead and would much rather enjoy what we had and what we were doing already rather than talk about something which was in the future and might never happen.  On reflection I think now that what I'm missing is a perfect world which never actually existed.   In that ideal existence the sun always shone, we never argued, I was slim and we had deep and meaningful conversations.  Real life isn't like that.  Over the past few months I have lowered my expectations and am starting to settle for what we have (which is still pretty good) rather than what I would like.  For instance I would like to

New relaxed attitude seems to be working

Yesterday I wrote about how I felt my high stress levels were affecting Ash's feeling of well-being and I was right.  Two days ago we were back to shouting at each other and he was angry at life which he hasn't been for ages.  I decided that I needed to put work in a box totally separate from what happens in our personal life and it's worked.  Last night I spent time out in the garden which meant I was relaxed when I came into the house and this morning we both woke up feeling better.  I've been at the office all day and came home to find Ash finishing off what I'd started in one of the flower beds and all without being asked.  It looks great and he's very pleased with himself so a win-win all round.  Tonight we're going up to the pub for a meal just the two of us, something we haven't done for ages, and life is lovely again.  I don't think I can say often enough that your attitude to your situation will make all the difference.  You can rail against

Memories and dementia don't always mix

The team at the Contented Dementia Trust will tell you all about the snapshot photos that we take throughout our lives.  They will also tell you about the beginning of dementia when those snapshots aren't always taken.  Instead there is a memory of a feeling and that can be either a good (green) memory or a bad (red memory.  The next time something happens we try to link the event to a snapshot of something similar that has happened before (I'm paraphrasing here so suggest you buy the book 'Contented Dementia' or contact them to ask for a booklet where it will all be explained properly).  When a snapshot is missing then we rely on the feeling, whether it be 'green' or 'red', to make sense of what's happening in our world.  I thought about this when I woke up this morning and, even though I was making a real effort to put the stresses of the last few days behind us and relax, Ash was still grumpy and uncommunicative.  I then considered it all day and

stress as a trigger

Over the past few days my stress levels have risen as I get ever closer to a work deadline.  I only work 2 days a week so you wouldn't think it would affect me but trying to match 27 members of holiday club staff not all of whom work every day to 27 children not all of whom attend everyday has not been the easiest of tasks.  Unfortunately my stress levels have had an effect on Ash's behaviour and he has been irritable, confused and unhappy which in turn has raised my stress levels even higher.  The odd thing is that it took me a while to realise what the problem was.  I thought we were just going backward (which we were in a way) and that we were sinking into the quagmire of a few months ago which meant that all the hard work of the past few months had been for nothing.  HOWEVER I'm pleased to say that I've finally recognised that the problem is me and, having finally finished my staffing rotas, it's time to put my feet up and relax a little.  Tomorrow is a new day!

Dementia can be very wearing

Definition from Google - If you say that a situation or activity is  wearing , you mean that it requires a lot of energy and makes you feel mentally or physically tired.  Well this morning ladies and gentlemen that was me.  A discussion about a lack of grass mowing opportunities due to the weather led to the fact that Ash apparently has nothing to do nowadays and we went downhill from then on with the circle of discussion getting smaller and smaller until I couldn't stand it any longer.  I suggested we got up and looked at all of the other jobs that needed doing in the garden.  It seems that those are my jobs now (who knew?) and not worth him bothering with so I showed him a small tree that needs taking down, digging up, sawing into pieces and then taking to the tip.  Problem solved.  I obviously can't do all that so I left him happily locating the saw while I went out for lunch with a friend and, when I came back a few hours later, the tree was gone, that particular corner of

Watch for the signs

I've been out and about in the car today on my own (I know I would have been better off in the garden but work called) and it gave me lots of thinking time.  The team at Contented Dementia Trust will tell you that by the time a person has been given their diagnosis they will already have been living with dementia for approximately 5 years and will have been scared beyond anything they've previously experienced at the gaps that kept appearing within their time line.   Certainly for around two years before diagnosis  Ash cried out on a number of occasions 'what's wrong with me'?  When he did that I reassured him that there was nothing wrong other than anxiety and depression both of which could be dealt with through medication.  He knew though that it was something far more problematic and I could kick myself for not taking his fears seriously.  I was too eager to reassure, too eager for it not to be dementia so what I want to say here is that, if you're loved one

What constitutes a difficult day?

Most people would think that my difficult days are the ones where Ash is confused, irritable, forgetful and all those things which come with dementia but, although all of those things undeniably make our lives uncomfortable, the days I find most demanding are the ones where life is almost normal.  So 'almost normal' that I forget.  We laugh, have a joke, plan things, discuss what we're going to do and then, out of nowhere, he makes a chance remark or does some random thing and it all comes flooding back.  We had a lovely day yesterday.  Met up with friends, had a walk in the shade of a country park, lunch at a pub on the riverside and there was that 'almost normal' feeling.  Ash drove the hour and half each way with no difficulty whatsoever, I slept most of the way there and back - 'almost normal'.  He even remembered it and said several times during the evening what a nice day it had been.  So when we woke this morning, for a moment I thought that our life

Radical thinking? possibly

Ash was diagnosed with early onset dementia last December.  He was prescribed Donepezil and then we were sent on our way.  Two follow-up phone calls came from the memory clinic to check that the medication was suiting him (it was) and then a message to say his care was being transferred to a different team who would contact him in 12 months time to invite him for another memory test to see how he was progressing (or not as the case may be).  We were left to our own devices and those of you who have followed this blog will know that eventually, and with the help of a number of people unconnected to the health service, we were set on the right track and are doing ok.  We are doing ok because I am removing the stress from our lives and one of the main ways of doing this is cutting out questions.  Now those of you who are lucky enough not to have been in a position where you have needed to visit a memory clinic may not know that the method for testing memory loss is to ask a list of questi

new trick (sorry, strategy)

Have come up with something new and can't believe it's taken me all this time to think of it.  I now always start conversations from scratch even if we've been discussing something earlier.  For example Ash has been painting the veranda at the back of the house which involved taking down the surf boards, body boards etc that had been stored in the rafters.  Yesterday we discussed whether to put them back in case Jake wanted them in the future or whether to get rid of them.  This morning they hadn't moved so I just said 'we really need to decide what to do with the boards.  whether to hang on to them or get rid'.  Ash's answer?  'Well I'm not putting them back up'.  He'd completely forgotten the previous discussion but was able to make a decision without feeling stupid of getting muddled.  Works well for me!

Having a vision (but not a hallucination!)

Had a conversation with the manager of pre-school this morning and we talked about how important it was to have a vision if you wanted to improve.  Her pre-school has been graded 'good' and she's now aiming for 'outstanding' which is how it should be.  I have always thought that those childcare settings who gain an outstanding from Ofsted are the ones who are continually working out where they need to improve their practice and what changes they need to put in place to get there.  These are the ones with a vision.  I pondered this as I drove away and realised there are parallels to living a life with dementia.  There is no point in making changes and then thinking that's it.  The most recent changes will make a difference but then the dementia will take a different turn and you need to be ready to make more changes.  In fact you need a vision of how want your life to be.  It must be an  achievable vision (there's no point, for example, in deciding that you&#

Something odd

Having spent all day sat in front of a computer trying to staff a holiday playscheme my brain has turned to mush so have turned to this for a little light relief. Ash has spent the last two days painting all of the woodwork on the outside of the house (other than windows) black and it looks amazing.  All the way through we've both been admiring it and wondering why we hadn't gone for black sooner.  He's even used the wood stain on the horrible old grey drain pipes.  They look equally good but we're waiting to see what happens the first time it rains before we declare that a success.   Anyway we've both been congratulating ourselves, and each other, on the choice of colour, the success of it all and the fact that it's now finished so I was taken by surprise when he suddenly said last night 'do you think I've made a mess of all that painting'?  I was taken aback to put it mildly.  I wasn't humouring him with all of the admiring remarks and there

Making plans (in a good way)

Had lunch with a friend today.  One of those things where we've been saying for months 'we must get together' and never managing it so about six weeks ago we put a date in the diary and today was the day.  Great company, lovely lunch and a thought provoking comment.  Those of you who know me or who have been following this story will know that holidays are my passion and planning them is my hobby.  I've been thinking about the need to get away in the winter and said that I was thinking about Spain just because it was easy.  Also said that I'd thought about Florida as it would be great fun but a little more work.  S said 'why don't you aim for Florida while you can as there will come a time when Ash won't be able to manage the journey'. Considered this all the way home and it seemed so obvious I couldn't believe I hadn't thought of it for myself.  Some people (maybe lots) will think I'm mad but stick with me while I explain: Ash really i

Searching for paint tins

The day didn't start well.  Well actually it did and that was the problem.  I was lulled into a false sense of security so I blame dementia for what followed.  Everything was fine when we woke up.  The sun was shining, we'd both slept well and Ash was smiling which is always a good way to start the day.  Then I blew it.  For some reason I thought he'd like to know what I was going to do with my day so told him all about the tins of fence paint in the shed that I was going to take into work so they could use them at one of the nurseries.  Which shed?  How many tins?  What colour?  He had no idea what I was talking about even though we'd had a discussion last week over whether they were any good for painting the summer house.  We lay in bed with him worrying about where this paint was and what it looked like, even what make it was and I could have kicked myself.  However, and I have noticed this a few times recently, by talking calmly to him, taking the blame for the conf

A little like a busman's holiday

I used to work in childcare.  In fact over the last 25 years I have managed three completely different types of nursery with the last being all consuming for a variety of reasons.  Now you may wonder what childcare has to do with dementia (although those of you connected with either may see similarities already) but I have remembered the staff meetings held at the most recent of those three and how useful they were.  Each month on the agenda would be a list of children who needed support.  Perhaps they had just joined us, maybe there were difficulties at home, possibly there had been a transition period in the nursery itself, whatever the reason we would look at what was happening, where help was needed and, most importantly, what changes we, the grown-ups, needed to make.  The list would be different at each meeting as children responded to the changes and those that benefited were moved off the list.  Where our changes hadn't made a difference we discussed why not and looked at w

Strategies need to be a moveable feast

A few weeks ago Ash kept putting floor cleaner on the shopping list because he couldn't see any bottles in the cupboard under the sink where he'd decided we'd always kept them.  I moved the bottles we already had from the cupboard in the utility room where they'd lived for several years and put them in the cupboard under the sink feeling very pleased with myself for solving a problem.  He's now stopped looking there as, apparently, we keep floor cleaner next to the sink in the utility room so when he can't see any bottles there he decides we don't have any and puts it on the shopping list.  Have now moved the two full bottles from the cupboard under the sink in the kitchen to the space next to the sink in the utility room.  Who knows where they'll have to go next.  On top of that while at my mum's last week I opened the utensil drawer in her kitchen to find a single, sprouting potato nestled amongst the knives, masher, serving spoons etc!  My life ge

Managing the situation

I have spent today delivering a training course to early years practitioners.  The course was about partnership with parents and getting parents involved in their children's learning.  Now this might seem a million miles from what we're experiencing just now but when we were discussing how to involve one particular parent in one particular setting things started to connect.  There were barriers to this parent getting involved but it seemed obvious to me that the nursery just needed to look at everything from a different perspective, think of different ways to approach the problem and keep at it until they found something that worked rather than getting frustrated because what they were doing wasn't working.  Then I stopped as I realised that it took me several months to get to the point where that happened in this house.  All the frustrations of the first few months crowded in on me but I also realised that we have done that and everything is so much better because of it. 

Finding a cure?

Everywhere I look at the moment there seems to be a request or a suggestion that I help to raise money to find a cure for Dementia.  Now I know that we need one and that life will be much easier for people in years to come when one is found but realistically that isn't going to happen any time soon.  What those living with dementia need is consistent support with what life is throwing at them right this minute.  When Ash was diagnosed with dementia the first thing that happened was for us to be asked to wait while staff at the memory clinic dispensed the drugs he had been prescribed.  The second thing that happened was that we collected those drugs and made our way out to the car and came home feeling stunned.  We were given no advice about services, who to talk to or where to go.  I found The Contented Dementia Trust by accident and it was the team there who gave Jake and me the strategies that made such a difference to Ash's life.  By accident I discovered a few weeks ago (fr

It may be sunny outside but ........

I've spent all day inside at a computer working so not much to report regarding dementia.  However I can tell you that Ash tried to complete the installation of the new tv today.  That sounds very grand but really just involved connecting wires so that the dvd player/recorder functioned.  The difficulty was that the tv and recorder decided that they didn't like each other very much and weren't going to communicate.  In that same situation not so long ago a crisis would have loomed and I would have spent a large portion of the day calming things down and sorting it all out.  Today Ash just decided that, as long as the TV worked (it did), the rest of it could wait until he had figured it all out.  What a relief that was!!

Another positive for dementia

Am discovering that arguments with a person who has dementia last just as long as it takes the other person to walk out of the room.  Just been putting a new tv together (courtesy of my mum) and a slight disagreement broke out over the plug of all things.  I decided it was easier to leave him to it so left the room and by the time I went back in 5 minutes later he had no recollection of the difference of opinion and just wanted to show me the tennis.  Who says dementia is all bad?

Breakfast with the four year old

Lovely, lovely day today.  needed to be out of the house by 9am as meeting up at mum's with J, S and the 4 year old light of our lives.  Jake brought and cooked breakfast and the 4 year old entertained the grown ups and the dog so what more could we want?  Ash in a good mood and very switched on the whole time so it felt like a normal family get-together.  May there be many more of them.