Showing posts from November, 2018


Ash and I always liked a party (well I loved them and he enjoyed them once I got him there) but for the last few years our lives have got quieter and quieter mostly because he had little conversation, preferred to sit in silence at home and there didn't seem much point.  NOW HOWEVER things are changing and this week is a fine example.  Tonight we have friends coming over for a meal, Friday we're driving a couple of hours to meet different friends for lunch and Saturday we're off to our (newly refurbished and very smart) local pub for a meal with yet more friends.  Everyone has been briefed on the 'no questions' thing, everyone we're meeting has a copy of the 'Contented Dementia' booklet so knows what to expect and I have high hopes of every single outing.  Who said dementia is the end of everything?  It's certainly been the end of our social life as we knew it but that really is no bad thing. NB: if you subscribe to this blog and don't rec

Who knew things could improve so much

A year ago today we got home from a major holiday and I still had no inkling that the irritating habits Ash had developed over the past few years were anything to do with dementia.  At best they were connected to the anxiety and depression diagnosed by one GP after another, at worst he'd got old and boring before his time.  We've come a long way in the past 12 months and I've found myself thinking about which of those habits still exists and whether, if they do, they still irritate me.  The result of those thoughts has been very interesting. Introducing a tv into the dining room means we no longer sit through meals in silence.  Timing meals to coincide with the news or a quiz show gives us things to talk about. Getting noise cancelling headphones means I can listen to audio books or music when I get fed up with the The Chase in an evening so I'm not bored and don't feel hard done-by Ash used to do almost all of the cooking but now can't cope with any of it. 

Working together

Following on from comments left a couple of days ago I've added a new page to the blog and updated an existing one.  There was already a page for strategies (Top Tips) but now there is a page for practical ideas too.  I've divided it up so we can have useful websites, helpful books and then practical things people have done to make their life easier.  If you have anything you want to share then please comment and I can add your suggestion.  If we work together we will be able to achieve so much more and just the couple of suggestions put forward at the weekend made so much sense and were things I would never have thought of.  I spend a lot of time trawling the internet looking for ideas to make our lives better and being able to access other people's experiences would be so helpful. I have to say that I'm really excited about this new development on the blog.  Writing it has already helped me so much and the thought of helping others just by being able to share inform

Life is a self fulfilling prophecy

A friend once said that she had told her psychiatrist of someone she knew who had an expectation of happiness in her life and was also always happy.  The person she was describing was apparently me.  Now I'm not sure about an expectation  of happiness but I do think that if we look hard enough we can find it in most situations.  I've thought this for a long time now but a few years ago when Ash and I were at rock bottom emotionally, financially and mentally I decided that I was wrong;  that happiness was present in some people's lives some of the time but it wasn't something we could control.  This life we're living now has shown me all over again that happiness is something that can be found and, often, in the most unexpected of places.  As in everything else to do with dementia (and any other aspect of life) you have to work at this.  I like to plan and I plan for all eventualities.  I was discussing Christmas recently and realised that around September/October I

Tipping point

Someone asked a group yesterday 'what is your tipping point'?  What they meant was what was it that would tip us over the edge into realising we can't cope?  This seems to me to be a negative way of looking at things and I wondered how we could turn it on it's head and make it a positive.  Don't get me wrong, I know there will come a time when I can't cope but I'm hoping that by looking at the positives I can put that day off for a long time to come and we're certainly not anywhere near it just yet.  Even Penny Garner from Contented Dementia Trust, who is the most positive person I know, tells us to be prepared for the one crisis which makes us realise we need professional help but day to day I feel we should be looking for solutions to make life manageable and even, dare I say it, enjoyable.  A friend told me once about the uncle who lived with her.  He had dementia and kept waking her in the night saying that there was someone in his bedroom.  She was

Putting others first helps everyone

 We have a slightly complicated clock system in our bedroom owing to the fact that we like to sleep in almost complete darkness.  First there is the clock radio which Ash bought me for my 21st birthday 37 years ago.  It tells us the time but the alarm doesn't work.  Then there is my phone which makes a noise when I need to get up.  Then there is the clock which tells us the day, date and time but is too bright to have on all night.  Generally I set my phone to wake us both at 7am, plug in the day/date/time clock when we wake up so Ash doesn't have to panic then go downstairs to make the tea (I do hope you're keeping up).  This morning I needed to be out of the house early to get to a conference for work.  Amazingly I woke before the alarm and started to creep out of bed thinking that I would get up without waking Ash but then I stopped, realising that by creeping out I wouldn't be able to plug in the day/date/time clock which in turn meant that when he woke he would hav

Do we need to discuss what's happening to us?

Frequently I hear 'my husband/wife/partner/parent won't accept they have a problem, what should I do'?  I found this at the very beginning.  I would try to talk to Ash about the future but either he couldn't get his head around it or he would refuse to talk about it or he would decide that he didn't have a problem and had no idea what I was talking about.  The first time I talked to a friend about what was happening to us (the friend who put me on the track of Contented Dementia) my words were exactly that.  'He won't talk about it.  What can I do'?  He very wisely told me that there didn't seem anything to be gained from talking about it and to leave well alone.  He was right and I now feel I should pass those words of wisdom on.  Over the months I've been writing this blog I hope I've shown that what will most positively affect your lives at this moment are strategies.  Ash is on medication and I have no intention of stopping it in case it

Attitudes are linked to respect

Yesterday I talked at length about how important respect was for everyone living a life affected by dementia.  It boosts self esteem, increases confidence and makes us all feel better about the whole situation.  Last week I also talked about how it's our attitude to dementia which robs a person of their dignity not the dementia itself and I really do think the two are linked.  Yesterday I heard someone say that his wife often comes through to tell him about something she has just heard on a quiz show and how sad it is that, by the time she gets to him, she's forgotten what she was going to tell him.  What I think is sad is that he isn't proud of her for wanting to tell him something interesting in the first place.  Does it really matter that she can't remember what she was going to say?  Isn't it more important that he was the person she wanted to tell?  Ash does something similar and it always sparks a conversation between us even if he can't remember the detai

Respect shouldn't disappear when dementia rears it's head

All too often when we're told a person has dementia (or any other illness/disease/disability for that matter) our response is to say 'oh'.  What we actually mean is 'oh no, how awful for you all'.  I did this myself only the other day when told someone had Motor Neurone Disease and I really should know better.   I was cross with myself because I only saw the disease not the person behind it,  I saw the difficulties not the skills that person still had and I instantly assumed that their life had suddenly become difficult.   The problem with dementia is that all we hear about are the negatives.  The reduced cognitive abilities, the confusion, the frustration, the anger, the distress.  People rarely tell us about the pluses or about how to turn those negatives into positives (although I hope that, if you're reading this blog, you're learning fast) and so it's the complications we focus on.  By doing that however we are forgetting the person we once k

An irritating aspect of dementia?

Questions, questions, questions.  These can be the bane of your life if you are living with dementia.  The person with the diagnosis asks them constantly, the person one step removed finds themselves doing one of several things in response.  We either give the same answer over and over or we snap and say 'I've already told you' or we assume that we're not being listened to etc etc.  However we respond all too often, at least in the beginning, we fail to consider the reason for the question.  So why all the questions?  One theory I heard a couple of days ago is that 'it's just another of those irritating things about dementia so you might as well get used to it' which is not a solution that endears itself to me.  There will be a reason, we just need to look for it.  A friend looks after her brother who has  dementia.  The friend broke her leg so couldn't do all the things she usually did and hobbled around on crutches.  Friend's brother continually as

Treading on eggshells?

I read lots about people who feel they are treading on eggshells around their loved one when he/she has dementia and think that maybe this is another example of when we should be looking at the illness differently.  At the beginning of all of this I never quite knew what was going to set Ash off.  I would say or do something and he would almost immediately start to get cross with me or become anxious and I was at a loss to know why.  I would ask and either he couldn't tell me or the reason he gave made no sense.  Over the months I've gradually come to realise that he is only like this if something doesn't make sense to him, if I'm trying to rush him, if I give him more than one instruction at once or if I overload him.  If I keep instructions simple, don't ask questions, stay calm and keep conversation to a minimum then he's ok.  I've also realised that most conversation is unnecessary.  A couple of weeks ago we were at the visitor centre at our local nature

The benefits of embracing the good times

A few years ago I was in a situation I really couldn't escape from, working 14 hour days and close to exhaustion.  When I got time off I wouldn't do anything as it made the time off go too quickly and so we hibernated for almost six years.  I had an end date for this situation so spent a lot of time feeling sorry for myself and wishing that end date would come.  This year I've once again found myself in a situation I can't escape from and I know there is an end date (although the precise day is unspecified) but this time instead of hiding away and wishing the end would come I've begun to embrace what's happening, learn from it and use what I'm learning to make things better.  Instead of hiding away from the world I meet friends and have had so many lunches out I'm actually psyching myself up to do the 'Couch to 5k' programme before I end up the size of a house.  These lunches and catch-ups have been brilliant not only for making sure I keep up wi

Looking at dementia differently

A while ago I posted on a dementia facebook group the quote 'Dementia does not rob someone of their dignity, it's our reaction to them that does'.  The vast majority of people responded positively but some disagreed which almost made me despair.  Those people still thought it was dementia that was stealing the dignity but as this  article demonstrates it really is the way we think about it. Everyone changes as they go through life.  If I dare to look back at the person I was at school I recognise bits of me but, thankfully, not the whole person (I like to think I kept the nicer parts and discarded the rest).  A person with dementia is no different.  Their personality may have changed on the surface but deep down something of the old them remains and it's up to us to find the bits that are hidden.  If we assume that they are their d

In the words of the Kaiser Chiefs .......

......... 'Oh my god I can't believe it'.  As most of you know by now Ash loves to watch quiz shows and would watch them back to back if he could, I however can only stand so much so we have reached a compromise.  We watch Pointless at 7 pm while eating our tea on the basis that it usually triggers some discussion, then we watch something of my choosing for the next hour.  At 9 pm Ash watches The Chase while I switch on my headphones and listen either to music while I read or to an audio book.  This has worked well for the past few weeks but tonight I couldn't find a single thing in my 8 o'clock slot so I suggested Ash could have two hours of The Chase and I went to the office  to look through emails, see what was for sale on Rightmove (a hobby of mine, not because I'm planning a house move) and any number of other computer related activities.  I'd just settled into web browsing when he came through asking if I'd seen the Scrabble board as he thought we

So what next?

Life is very calm here at the moment and things feel under control.  I realise that this is a reckless thing to say and that I should be touching wood in every direction but it's true that we are currently in a little hiatus however short it may prove to be.  Ash is very capable just now.  Logs are being split, the bathroom floor has been painted, social events are better than just manageable, conversation is increasing (as long as I pick my moments) and things are looking up.  Not only that but where I was dreading the winter evenings when I thought I would be condemned to sitting in silence watching quiz shows I now have my noise cancelling head phones so can read, listen to music, use to meditate, pay attention to audio books (although I'm having to train my mind not to wander - hence the meditation) and am looking forward to learning to play the piano and to knit.  No time then to be bored but room in my brain for other things hence the discussions with The Thomas

There is no end to what can be achieved .......

Yesterday I had lunch with another friend who I haven't seen for ages.  A year ago this friend was the first person to pick up the phone and ask me if Ash had a problem.  He'd been bush beating for them as he does every year but this time had got lost on the way there, phoned her and not known where he was, not even if he was at a T junction.  He had acted out of character all day and she (and her husband) were worried about him.  I, being in denial, assured her he was just suffering from anxiety and she, bless her, pretended to accept the explanation.  The bush beating season is about to begin all over again so I emailed her to ask if they wanted Ash this year.  I hoped they did as he is so looking forward to it but would have completely understood if they felt they couldn't cope and backed away.  I am so happy to tell you that, not only are they welcoming him back with open arms, but the reason for the lunch yesterday was to see what they need to put in place to make sure

'The end of life as we know it' isn't confined to dementia

Yesterday I heard about the death of an ex colleague.  We didn't work with each other for long but it was, at times, a difficult project with only the two of us actually on the ground day in, day out which meant we relied on each other,  He had skills I lacked such as attention to detail and the ability to look at a group of numbers without them scrambling in front of his eyes.  He also made me laugh on an almost daily basis.  Most of this was from a distance as we lived in completely different parts of the country but it all helped to make the project a success.  I haven't seen him since February this year but we have kept in touch with the occasional email.  The thing is that when I saw him last Ash had just been diagnosed with dementia and I thought my world had come to an end.  He on the other hand, although not particularly fit or healthy, had plans for his future.  There was no sign of the tumours growing inside his head and no reason to think that 11 months down the line

Peace of mind

A friend gave me a book yesterday called 'Slothology - the art and wisdom of taking it easy'.  It's full of so many sayings with which I totally agree that I have read the whole thing with a huge smile on my face.  The one that struck me more than all the others was 'Set peace of mind as your highest goal' and that is what I now aim for every day.  It takes hard work, involves planning and means going with the flow when sometimes your every instinct is to run in the opposite direction but I really do feel it's the only way to live.  I am a control freak and there are things Ash does which drive me crazy.  He washes up when he could put the pots in the dishwasher, he wears walking boots all the time when I think he would be more comfortable in trainers, he puts things away in different cupboards each time so that I have to hunt for them, he doesn't delete photos from the memory card in his camera so each time he wants to download the latest ones it takes him

An exciting and life enhancing opportunity

I've been thinking for a while (and may have mentioned it before) that there are many similarities between dementia and autism.  There is the same need for routine, the possible triggers for anxiety are endless and unpredictable, the need to be within a comfort zone is inescapable and, most importantly, every single person with either dementia or autism is unique.  I also know that holidays with either group can be fraught.  All of this then led me to the recollection of a family run holiday complex not far from where we live which has been designed especially for families of children with autism.  The idea is that the whole family can stay in a cottage alongside but independent from others in a similar situation.  As they say in the brochure 'There is just one rule; no need to apologise, no need to explain'.  Anyway today I went to have a look and it is truly wonderful.  There is an indoor heated swimming pool which families book for private use, there are woodland walks,

A quick post

Am out all day today so wanted to write this before I set off.  Last night we went out for a meal with friends.  They are very good friends, we've known them forever and were out with them three weeks ago.  The thing is that they don't read the blog and I hadn't thought before the last meeting to tell them about the 'don't ask questions' strategy.  They are lovely and very polite so the first thing they did was ask Ash how he was and what he'd been doing.  This threw him completely and all he could think to say was that he hadn't been doing anything which is a bit of a stumbling block at the beginning of any conversation.  We had a great evening and Ash chatted but it was almost as though he was on the periphery of the group.  A few days later I called to see them, took the 'Contented Dementia' booklet and told them about not questioning.  Last night it was obvious they'd taken it all on board and the difference in Ash was staggering.  He not

Not hiding away

I've just been watching this clip  and it made me think of how far I've come with all of this.  The guy in the clip is talking about how important it is not to hide away when dementia affects someone you love.  When we were told at the memory clinic that Ash had dementia my first instinct was to run and hide.  I thought it would be embarrassing, that it was an old person's disease and that it would be too hard for other people to have us around.  Initially I told five very close friends, but they were sworn to secrecy, and then I went away to lick my wounds.  Ash's feelings didn't really enter my head as I assumed that he would just stay at home unable to function and that we would sink further and further into isolation.  We got through Christmas and the following few weeks and then I decided that maybe other peo

Yet another break through

A few years ago we had our central heating boiler replaced and the removal of some pipes left a large hole in the bathroom floor.  We don't have the perfect house so just left the hole as it was and, after a while, stopped noticing it.  About a week ago Ash decided he was going to buy some filler to put in the hole and then paint over it all.  Three days ago he did just that and I didn't think any more of it.  That's the first part of the story.  The second part is begun by me telling you that a while ago whenever he woke before me he would lie in bed rigid with fear that if he got up he would wake me.  This would make him cross and the day would start badly so I began to set the alarm for 7am which would mean that we both woke up at the same time, I could go and make the tea and the day would get off to a calm start.  Two weeks ago (I hope you're keeping up here) I forgot to set the alarm and when I woke it was to be greeted with an angry Ash saying that he had lain st

At peace with myself

I've discovered that to live comfortably with dementia you must first be at peace with yourself and this goes for both the person with dementia and those of us once removed.  Before I learnt this I would race through life being busy, searching for things to do, places to visit and people to be with.  There was no time to 'just be', no room for contentment and no space for watching the world go by.  I was always looking for a new experience, planning the next holiday, waiting for the next social event.  There is a poem by W H Davies which says it all I think: What is this life if, full of care, We have no time to stand and stare. No time to stand beneath the boughs And stare as long as sheep or cows. No time to see, when woods we pass, Where squirrels hide their nuts in grass. No time to see, in broad daylight, Streams full of stars, like skies at night. No time to turn at Beauty's glance, And watch her feet, how they can dance. No time to wait till her mouth ca

One step backwards, two steps forwards

Even though things are going pretty well we still have moments where life isn't quite on track and this weekend was like that.  Most of Saturday Ash was grumpy and didn't want to talk except to argue then friends came over, we had a lovely evening and I thought we'd got through it.   Yesterday morning however started off much the same and it felt as though we were moving backwards which put me into despair for a while but despair produces no change for good and I realised it was up to me to do something to pick us back up.  But what?  Something nice, something interesting, something to grab his attention and something for both of us.  One of Ash's favourite past times is photography so I suggested a trip to the coast (only 10 miles away luckily) and coffee in the visitor centre at the local wildlife trust.  I've been before through work but, as often happens when something is on your door step, we hadn't ever been just as visitors.  I suggested cameras and binoc


I am  bemused on behalf of all those who are friends of people with dementia in their lives.  Just now I have read a post on a forum written by someone who has had a few difficult holidays recently.  She had told a friend that she had given up on holidays and the friend instantly suggested that this lady and her husband (who has dementia) joined them on holiday so that the friends could be there to lend a hand where needed.    This was apparently completely insensitive and the friend had no idea what demands dementia brings.  The lady was now considering not speaking to the friend ever again.  I'm hoping you're with me in being bemused at this.  There was no recognition that the friend was trying to help, no understanding that the friend was willing to adjust her own holiday needs in order to be a support and no comprehension that this offer was a big deal by any standard of friendship.  All that mattered was that the friend 'didn't understand the situation'.  I don

Focusing on needs

After reading yesterday's post a friend asked me if I thought that Ash was now able to think about something other than his own survival because the strategies I'd put in place had given him space in his head to focus on something other than just that and I really do believe it.  If he was overwhelmed with the thought of choosing what to wear in a morning why would he get out of bed?  If he couldn't cope with questions why would he risk starting a conversation? If the thought of having to work out what jobs needed doing (never mind worrying because he no longer knew how to do them) stressed him out why would he move from the breakfast table?  All of those fears must have been a block weighing down on him and preventing him from enjoying the life he used to love.  Just buying five sets of the same outfit helped but he still had to work out where the clean ones were which panicked him.  Replacing dirty clothes with clean ones dropped in almost exactly the same place has remov

Small steps lead to a big breakthrough

This might not seem like a big deal to some people but to me it makes all the difference.  At least since Ash was told he has dementia (and probably for some time before that) he has been emotionally distant.  He's rarely noticed if I've been upset, the times he has noticed he hasn't asked why and the vast majority of the time he's only really been interested in how events have affected him.  For my birthday Jake organised for mum to buy me some very expensive noise cancelling head phones so that I could have music on and read while Ash was watching yet another episode of The Chase (I can only stand so much).  I have tried them twice and was irritated because I could still hear the television.  It doesn't help that Ash has a problem with his hearing so we have the television up quite loud but I thought 'noise cancelling' meant 'noise cancelling' and wasn't a happy bunny.  I tried again last night and was, once again, complaining that they weren&#

We've come a long way

This morning I was thinking about how far Ash and I have come over the last 12 months.  A year ago we went on holiday to Florida and I planned it just like any other holiday with the hire car, the different accommodation, the list of activities to experience and the destinations to visit while we were there.  In fact that holiday was my most ambitious ever and entailed 11 different bookings.  That holiday was quite hard for him as it entailed lots of driving on the 'wrong' side of the road, we stayed in four different apartments in three different places and we needed to make decisions almost every day. We flew to Fort Lauderdale, travelled down through the Florida Keys to Key West for just over a week then back up to West Palm Beach where we spent a week on the beach before returning to Fort Lauderdale.  Six weeks later Ash was diagnosed with Dementia.  Now that diagnosis didn't suddenly mean he was much worse or in fact that anything had changed at all but over the last y