Showing posts from August, 2018

Benefits of a blog

I started this blog to help me focus on the positive and it's helped me more than I could possibly have imagined and in more ways than I would have thought possible.  I'm not good at talking about personal stuff and anyway at the beginning of all of this I couldn't talk about it without crying so that was no use to anyone.  The blog has meant friends can follow my life (not in a creepy way you understand, at least I don't think so - they are my friends after all) and this means they know where my mind is most of the time, what stage we're at and what's happening to us.  They are completely and utterly supportive so I'm obviously not scaring them too much and it means I don't have to keep filling them in each time we meet.  That then is one consequence of the blog.  Another is that it seems to be helping other people which in turn makes me feel good and them feel better.  A third, and totally unexpected, 'thing' (have run out of different words an

Laughter really is the best medicine

Just had the picture below pop up on my facebook page and it made me think.  Yesterday was a good day and today has followed suit.  Not only do we have some freshly painted floors (shower room, utility room and back hallway) but Ash has mended the tumble dryer, restored the utility room following the mending of the tumble dryer, mowed the lawn, trimmed the edges of the lawn and weeded one of the paths.  All of these have given him such a sense of purpose his well-being has risen sky high and he is back to smiling and joking.  In fact today has gone so well I'm in danger of forgetting (but I promise I won't).  The thing is that laughter and joy really do cure most evils and there are days if you're dealing with dementia when there is little of either so the trick I've decided is to grab the good times with both hands and laugh as much as possible whenever you can (although you need to keep the hysteria at bay obviously).  Before all of this started most days Ash would ma

Today is a good day

After the horrendous start to Monday I thought we were on our way down with all of this but ...... Ash got to my mum's, cut the grass and came home, managed an evening and whole day without me and painted the utility room and hall floors so they look better than they have in a couple of years.  On top of that today he cleaned  the utility room (a major job I can assure you) while I went to see a friend for a cup of tea AND when it came to taking the dog for a walk he remembered where I was so called to check I'd got my door key with me in case I got home before him!!!  I'm trying to keep the 'high' in check as I know it won't last but am so happy I can hardly contain myself.  It really is amazing how the small things can make so much difference. Have also decided that this is the year (or at least while it's still possible) to say 'yes' to any invitations that come my way.  I have no idea how much longer I'll have this freedom so am determined

Use your friends wisely

I have talked quite a lot in this blog about the importance of friends.  I/we have very, very good friends who are more supportive than I would ever have thought possible and I have even written a post regarding choosing your friends wisely (which I have obviously done) but this time I need you to think about the best 'use' for these friends.  At the beginning of all of this I got to a point where I thought I really couldn't cope so I went to the GP and asked for some little white pills (actually any colour would have done but I'd been told about the white ones).  I explained that the only person I'd ever been able to cry in front of was Ash and that was no longer an option so the pills would have to help instead.  A lovely 12 year old GP told me very kindly that she couldn't give me the pills I thought I needed but would instead give me 10 sleeping tablets to be taken when I really needed them and then suggested I went home and cried to my friends.  Now this wa

Enjoying some peace and quiet

Ash is out and I'm enjoying the peace and quiet of home which seems quite a rare thing to do nowadays.  Looking through the window into the garden I've been thinking about how much we've achieved with it and how none of it would have been possible without the skills neither of us knew he had when we got married.  Our cottage used to be three and the people before us had knocked it into one and taken up the fences between the gardens.  That was just about the extent of their 'Love your Garden' thinking although they had used the window frames and cupboard doors, discarded through the renovations, to create a fence which meant, they assured us, that the dog wouldn't be able to escape.  Looking at old photos now I don't know how he did it but somehow, over the years, Ash knocked down four sheds and built a raised brick patio in their place; took down, moved (away from the back door) and rebuilt a metal shed, dug and planted flower beds, put in gravel paths, cre

The saga continues

The floor painting saga that is and I was going to tell you all about it.  In fact I had typed out the whole episode before I decided that it really was too depressing to dwell on so all I will say is that, after a slight battle of wills, painting will resume tomorrow after I've left for a brief overnight away and the floor will hopefully be dry by the time I get home on Tuesday evening.  To take my mind off the whole sorry story I've spent the past hour printing off photos from the holiday playscheme you've heard about over the past few weeks and looking at those children smiling away for the camera has made me realise all over again that my life could be so much more difficult than it is. The picture/quote below is from 'Dementia Awareness Everyday' and is something I try and hold on to.

Resistance is futile

We live at the end of a track, have a dog and Ash can't see the point in taking his wellies off when he nips in and out of the house so a few years ago we took up all the carpets and painted the concrete floors cream which looked lovely for a while.  Unfortunately those floors need repainting on a regular basis and the paint can take up to 72 hours to dry.  On Thursday I came home from a visit to my mum to find Ash out with the dog and note on the shower room door saying 'No entry, wet floor'.  Now in the scheme of things this wasn't a problem once I'd got my head around the fact that I needed to go and buy shampoo for the morning as I couldn't get to the bottle in the shower.  What worries me a little is that he now has it in his head that he's going to paint the floors throughout the house and I'm not sure how much of a strategy there's going to be.  On the flip side he has such a broad smile on his face because he's done a really good job, the

Dementia brings yet another new experience

Today I had lunch with someone I have 'met' through this thing called dementia.  We bonded through a forum, then the blog and finally by email and decided to meet face to face.  I've never done this before but Jake assured me that internet friends are no longer considered weird so took his word on it and we set a date and found a venue.  Am now here to tell you that talking to someone who is going through a similar situation to yours is a very positive experience.  We kept finding that we worried about the same things and found the same solutions worked wonders which also meant that we know we're not alone.  One of the things I think is most difficult about this situation we find ourselves in is that no-one really talks about it they just get on with life and manage as best they can which means you have no idea that other people are facing the same difficulties you do or feel the same way as you.  Today has been so helpful that I traveled home smiling all the way (even

Feeling a little overwhelmed

Sometimes I admit to feeling  a little overwhelmed and this morning was one of those times.  It began with one of those circular discussions around grocery shopping which I really should have learnt to avoid by now.  I foolishly suggested that we go really early on Saturday morning as I was out all day today and the same tomorrow and it's bank holiday this weekend so our seaside town will be heaving anytime after 9.30am on Saturday.  This sent Ash into a downward spiral of confusion and led me to promise myself that in future I will arrange our week so that we can always  go on Thursday evening or Friday morning.  Sorted that out and then my mum rang. Mum:  'What time are you coming today?'  Me: '11am just like we discussed last night' Mum:  'I've got a doctor's appointment at 12.20' Me:  'I know that's why I'm coming' Mum: ' The cleaners will be here' Me:  'I know.  We're leaving them a key so they can lock up&

The importance of self esteem

I have written quite a lot about the lack of self esteem in those diagnosed with dementia but actually those of us sharing that life can also have problems in that direction.  I know it's been mentioned before but think it's worth saying again, when a person is diagnosed with dementia they have probably been covering up the problem for at least five years before that eventful day and that can be a long slog for the whole family.  Even without a diagnosis most partners or those close to the person with dementia will notice small changes in behaviour and attitude and it's only natural to take those changes personally.  It's very hard not to think it's you that causing the emotional withdrawal, the lost sense of humour, the anxiety and the unwillingness to move out of the house.  What was I doing wrong? what could I do differently? what situations should I have avoided?  I still have a feeling that a stressful situation I got us into was the trigger for all of this eve

Lessons from a four year old

So my lessons today were: if you're going to collect stones at the beach you really don't need a trolley, a dumper truck, a spade and a digger.  What you do need is a long handled metal egg separator and a bag to put the stones in.  Note for the next visit?  take less! There is a particular way for bashing nettles which renders them useless.  If done my way they spring back up and hit you on the arm. If pulling a garden trolley containing a four year old through the local wood keep to the flat parts of the track or said trolley will tip over taking the four year old with it. Lessons 2 & 3 were useful in more ways than one as they allowed Ash to feel particularly superior which sent his self esteem into orbit especially when the four year old (after the tipping episode) would only allow him to pull the trolley. All in all another successful day and once again a wonderful example of how confidence can do wonders in diminishing certain aspects of this thing called

Company of a four year old makes all the difference

I was told very early on in this 'journey' that one of the big problems with those diagnosed with dementia is that by the time they get that diagnosis their self esteem is at an all time low and that was certainly the case with Ash.  He thought he was useless, a waste of space and so gave up on doing almost everything.  The company of the gorgeous grandson over the past 24 hrs has changed all of that.  How can you think you are useless if someone, however small, thinks you are amazing?  How can you think you're a waste of space if a small person thinks you are the only one who can rid the world of wasps?  I do know, having been the mother of one (even though it was a long time ago), that the company of a four year old doesn't always lead to contentment but, if you are living a life affected by dementia as we are, the benefits are enormous.  If you don't have one of your own I recommend you borrow one as soon as possible. On top of that piece of advice, if you are

Take a deep breath, keep calm and think of a way out

This morning I woke to find Ash in a state.  Apparently he'd been awake half an hour not daring to move in case he woke me and I was cross!!!! Something similar has happened on a couple of occasions before and each time I've messed up and made the situation worse so I took a deep breath, kept calm and said I was going to make a cup of tea.  When I returned with the tea he carried on with his agitated explanation of why he was upset and apparently it was all my fault.  In the past I would have got into the endless circle of discussion where I would try to reassure him that I wouldn't be cross and he would get more anxious.  This time I made myself keep quiet (anyone who knows me will tell you this is not an easy thing for me to do at the best of times!) and focused on the next few days with the gorgeous 4 year old who's coming to stay and then moved on to what I would spend our lottery winnings on if we ever had any.  Also, just in case you're beginning to think I

Interesting how change soon becomes the norm

Three weeks ago I went to a party on my own, Ash having opted out.  Even though I'm not worried about doing things alone it felt odd not having him with me.  Since then I've been to two more events while he's stayed at home and yesterday's (the third) felt perfectly normal.  Not only that but I noticed that several other people were there without partners and those that were with someone wandered around chatting to people they knew and I suddenly realised all over again that I can do this.  Being with someone, however much you love them and however long you've been together, isn't the be all and end all of life.  If Ash is having a good day and wants to come to something with me then that will be lovely but if he's having a bad day or loses his confidence, however temporarily, then that's ok with me.  While I can leave him I will do things on my own and it will be far more comfortable that having him by my side wishing so much that he was at home sitting

'Rules' to live by

At the very beginning of this journey through dementia our lives were very difficult.  We were both stressed, we argued all the time and I had no understanding of what Ash was going through.  Then (and forgive me if you've heard this before) two things happened.  I talked to a friend in a similar position and he gave me some strategies to use then Jake and I went on a course run by the Contented Dementia Trust where we were given additional strategies and a completely different way of viewing what was happening to us.  All of these things improved our lives almost overnight and we have rarely looked back (however I'm not a saint and so I do occasionally slip).  Now when I was first given all that advice I was at rock bottom and couldn't see a way out.  I was so desperate that I would have tried anything to help us and any advice was gratefully accepted.  A couple of days ago I saw a list of 'rules' very similar to the 'Top Tips' page on this blog.  I was r

Staying focused

Living with dementia can be so frustrating and it's often the little things that are the most irritating.  We were going out last night and it was a quick turnaround from me getting home from work to us getting out of the door which is never easy nowadays.  Ash got changed and then asked if his trainers would be ok to wear.  I suggested flip flops and he agreed.  I then went up to get changed, came down and found him wearing the grotty trainers!  Not so long ago I would have pointed this out, asked him why he'd wanted my opinion if he was going to ignore it, he would have had no recollection of asking the question so would have been scared about the gap in his memory and everything would have escalated.  Well everyone, I am hear to tell you that over the last few months I have learnt several important lessons and this time it was that footwear is not an important issue.  Did it really matter what was on his feet?  Was anyone actually going to notice?  The answer to those two qu

Keeping occupied

I have written on here that I now take life one day at a time and that is completely true in that I most of the time I am able to change our lives according to what I think is needed when it's needed.  I say 'most of the time' because I'm not perfect.  I try but sometimes I just get it wrong.  I don't listen or watch closely enough, I say or do the wrong thing, I'm wrapped up in me and then everything falls apart and I have to start again.  Anyway I've been thinking about the past few months and how I've managed to stay sane and realised that there are a few things (other than amazing friends and family) which have helped.  After 36 years of marriage I've finally found an enthusiasm for gardening (although that's mostly snipping.  Give me a pair of secateurs and I've discovered there's no stopping me); this blog has helped me more than I would have believed possible, it occupies my brain and makes me focus on the positive; work - when I&#

Planning is the key to everything

Have started thinking about our next holiday and those of you who've been following this will know that after talking to a friend I've been considering Florida.  I have no idea how long it will be before dementia well and truly rears its ugly head and I do realise that up until now we've got off quite lightly so think I'll go for it while we still can.  I've learnt from the last two holidays so no hire car which means wherever we go must be within reach of the airport at least by taxi.  We also need to be within strolling distance of the beach and shops where we can buy food.  Sight seeing isn't a problem as Ash has always refused to do that so as long as we can experience another way of life and spend time lying in the sunshine it will be enough.  So I know how to get around all of the issues surrounding Ash but then there's my mum.  She's 89 and lives on her own.  She's fit for her age and doesn't need carers but that means if I'm in Florid

Nothing stays the same

On the page in this blog giving suggestions on how to make travelling easier the fist tip I give is not to go anywhere for fewer than four nights.  That was written in April and this weekend shows 1) how far we've come since then and 2) how, when dealing with dementia, you need to recognise that nothing stays the same.  The last time we went away for a short break it took Ash three days to relax and work out where we were.  I wrote about that and also remembered all the other times we'd been away for less than a week and he'd woken in the night not knowing where he was or woken in the morning worrying about what we were going to do for the day so I was a little apprehensive about visiting friends for the weekend.  Four months on from our last short break and we've had a lovely trip.  It's a long time since I've seen Ash so relaxed and I kept commenting on it but it wasn't until this morning when I discovered that I'd forgotten to give him his anxiety tab
What a difference a few days make.  Five days ago we were in crisis over the weekly grocery shop.  Ostensibly light bulbs were to blame but thinking back I feel it was because I'd pushed the shopping day back to Sunday.  This morning Ash opened his eyes, realised it was Friday and asked 'what are we doing today'?  As soon as I said 'food shopping' he visibly relaxed and all was well in his world.  It seems ridiculous that something so small can take on such importance to him but it does and is just one example of how he needs structure to keep him on an even keel.  When he was working he never knew from one day to the next which part of the country he would be heading for or where he would end up but he thrived on it, Life today is just so different. We are now going away for a couple of nights.  This is the first time since February I've been brave enough to try a short break but we're going to friends with whom he feels very relaxed and comfortable so I&

A memory for two

If your loved one has been diagnosed with dementia you really will need a memory for two.  There will be no opportunities for 'do you remember when.......?' or 'just like when we .......', instead you need to make sure you hang on to those memories that you have of your past together.  It doesn't matter how you do it.  It can be through photos, a diary, reminiscing with family and friends, any number of ways but you really need to make sure you hold on to it all as that will sustain you when the long chats into the night have gone, when the companionable walks in the country or on the beach no longer happen, when the adventures together are no longer possible, when the snuggles on the sofa are things of the past, when the romantic meals with just the two of you have disappeared or when family get togethers are not quite the same.  In our lives things are changing slowly but I make a real effort to notice the small shifts in behaviour and attitude as that way I find

A life gone by plus a life still worth living

Talking to old friends a couple of days ago about things they'd done, adventures they had and what was planned for the future.  When they'd gone I was sad as I thought of all the things we're now not going to do but then I thought of all the things we'd done in the past and I was cheered.  Over the years, as a family we've camped, skied, cycled and hiked.  Two thirds of the family (Ash and Jake together) have used surf boards, body boards, skim boards and windsurfers as well as learning to water ski.  As a family we've travelled to Australia, Canada, Comino, Antigua, Santorini and various parts of France.  We've also been to Scotland (East and West coast) and Wales.  As a couple we've travelled to Corsica, Canada, Australia, California, Florida, Sardinia and Venice as well as France and the Republic of Ireland.  On top of this we've visited numerous places in the UK.  We've stayed in holiday cottages, apartments, youth hostels, tents, glamping po

The power of positive thinking

Yesterday began as a miserable extension of Sunday.  Even though I was trying hard not to be I was still cross and upset from the circular discussion over light bulbs (and how stupid does that sound!) so I snapped when Ash asked a question which in turn made him snap back as my snapping had made him feel stupid and so it went on until I'd dug a big hole I didn't feel able to get us out of.  We were both upset and he was angry with the world all over again.  After a couple of hours of this I'd had enough and took myself off to write about the lovely time we'd had at the Christening on Saturday.  The change in my mood was almost instant as I found myself remembering the day and the way Ash had smiled the whole time and chatted to everyone around.  What a difference to the light bulb scenario.  What I also found however was that as my mood lightened yesterday so did his and this happened so quickly that within half an hour of me finishing the blog he'd got the mower ou

Good times

With all the difficulties yesterday I forgot to tell you about the lovely day we had on Saturday.  This just shows the ups and downs of dementia and also the need to focus on the positive.  I started the day expecting to write all about it and then found myself telling you about an argument on the subject of light bulbs.  Which, I ask myself, would you rather hear about?  And so to the Christening on Saturday.  Really wasn't sure Ash would go as he's bailed out of the last two social events we'd been invited to.  The first one however was somewhere he wouldn't know anyone which would have been difficult for him at the best of times and the second was at the end of a long day which had seen him drive a four hour round trip to Norfolk and back so both understandable.  This then was a kind of test to see where we are on the dementia spectrum.  The Christening was a family one (through Jake but family all the same) and, although there would be many people there we didn'

Consequences of not listening to advice

My own advice that is.  This morning started so well that I was back in the land of make-believe where everything was fine and life would get back to normal however we were going grocery shopping and Ash started to make the list as he usually does.  You really don't need the details but a discussion started over light bulbs of all things.  At this point I really should have heeded the TOP TIP on here and on the fb group (both of which I added myself!) regarding 'don't argue' but I genuinely had no idea that this was where we were heading.  I was soon kicking myself for pointing out that we get light bulbs from the local hardware store not the supermarket as, very soon, raised voices could be heard in the house and probably right across the village.  The thing is that if I hadn't started this blog I would no doubt have believed Ash when he told me we were permanently at loggerheads, that he couldn't do anything right and that I was always criticising him.  Luckil

'living with' not 'suffering from'

I was listening to the radio on the way to work the other morning when I heard something which made me consider how far we've come over the past couple of years.  I can't remember the exact wording but the gist of it was that suffering is caused by resisting change in our lives and resist I did on a grand scale.  When I think about it I realise that Ash began acting out of character as far back as 2012.  He began forgetting conversations he'd had with people, he would repeat himself , he would ask the same question more than once, only occasionally to start with and then with increasing frequency.  He lost all his enthusiasm for life and all of his confidence until he doubted everything he wanted to do.  I resisted all of this.  First I assured him it was normal, then I got cross, then we went to the GP where, eventually, he was diagnosed with anxiety and depression so then I promised him that medication would cure him.  He went for a CT scan which came back normal and he w

Retail therapy

As with ranting I don't really 'do' shopping but went to mum's today for the first time in two weeks and we decided on a little retail therapy that wouldn't be too stressful for me.  This summer I've spent more time in the garden than ever before and so have also had time to notice things.  What I've noticed more than anything is that our summerhouse (AKA 'The Shed') is looking a little stark.  I love it as it is a calm refuge from which I can look out on the garden and the birds helping themselves to seeds and nuts from the feeder.  Outside it is black with pale green window and door frames.  Inside there is more pale green on the two chairs, small table and worktop that is wonderful for spreading the Sunday paper out on.  The walls are white with only a (pale) canvas, a skim board and an apple crate holding bird books to break it up and that is almost it as far as colour is concerned.  This makes for a calm environment but is, I've decided, a l

Ranting for positive effect

You may have gathered by now that ranting really isn’t my thing.   I have begun to avoid forums as that seems to be all I read and I find it so depressing.  Personally I feel that if I rant about this situation we find ourselves in it focuses me on the negative rather than the positive and that's not at all helpful.  However a friend and I were discussing the subject of ranting this morning and she pointed out that I do rant occasionally but in conversation.  Friend said that to rant in this way can actually do you good as it gets some of the frustration out of your system and doesn't require a reply.  She pointed out that when I rant to her she 'mmms' and 'aaahs' without actually agreeing with me (which I hadn't noticed!) and lets me run on until I feel better.  However she pointed out that the problem with putting a rant into solid form especially on the internet invites agreement  from readers and the responses are generally negative in tone reinforcing

Managing expectations

I told a friend recently that to deal with her husband's dementia effectively she needed to lower her expectations but have been thinking about this and realised it's not true.  What those of us living with dementia must do is change our expectations not lower them.  Before I got my head around all of this life was very difficult.  I would get home expecting the house to be tidy, the lawn to be mown, the tea to be cooked and on and on.  After all Ash was at home doing nothing all day so why wouldn't everything be neat, tidy and ready for me?  Then I would get home, nothing would have been done and I was frustrated, disappointed and cross.  In the end I dreaded going home as what I expected was a house in turmoil and an argument (and almost invariably that's what was waiting).   What I didn't realise was that his mind no longer worked that way.  He wasn't capable of running the house, keeping the garden tidy and doing things in an orderly way which would mean eve