Showing posts from October, 2018

Diagnosis not required

Have been thinking about my mum and her memory recently.  Yesterday I said I didn't think she had dementia but there's no denying that her memory is appalling and if I go by Contented Dementia thinking then she may have.  For example she eats the same things for breakfast and lunch each day and if I buy anything different as a treat it sits in the fridge until it reaches its use by date and then I throw it in the bin;  If I buy cream (which she has with fruit every day) she will only think to use it if it's the usual brand, anything different and she thinks she's run out and goes to the village shop to buy more; she writes things in the very small boxes on her calendar and often they won't fit in the space so I bought her a diary but she doesn't think to look in it; she asks the same questions again and again but never remembers the answers.  So all of these things along with a few others would seem to indicate that she has mild dementia however when her

Life lessons (#2)

I wrote yesterdays post while on a high from successfully getting my mum to her 'posh luncheon club' when she hadn't wanted to go and seeing her confidence and well-being grow just by walking through the door.  In fact I was feeling fairly smug and pleased with myself all day.  I collected her, drove her home and made a cup of tea before leaving to get back in time to cook tea but while we were sitting chatting she announced that she wasn't going any day when it was icy as she didn't want to be out on icy roads!  Now this didn't bother her last winter when I went over every week to take her out shopping and for lunch and I'm fairly sure it won't stop her coming over for Christmas but she is adamant about this.  I am equally adamant that she will be going every week as she has such a nice time and is so chatty for the whole of the following week.  The question is: how to deal with it?  The thing is I've realised that if this was Ash I would know exact

Life lessons

A few weeks ago I persuaded my mum to visit a local care home one day a week just so that she had people to talk to, things to do and something to tell me about.  Much to my relief this has been a great success.  The home is just like a 5* hotel.  It's stylish, sophisticated and the residents are all friendly and chatty.  Mum loves going but sometimes I think it's just too much effort for her.  Today was one of those days.  We'd had a busy day yesterday with a visit to the (now) 5 year old and the rest of the family, out for lunch and a walk back from the bistro so when she rang this morning to say it was icy (it wasn't) and she didn't want to go out I gave her the benefit of the doubt and, deciding she was just tired, told her that I'd be there in an hour to collect her so she needed to start getting ready.  When I arrived she was dressed but grumpy.  I ignored the grumpiness and started fastening curtains back and tidying up around the house while she put her

It's the small things

I sometimes read posts on forums from people who feel that looking after someone with dementia is a thankless task because the person they are caring for doesn't recognise how much is being done for them.  In our case I know I do a lot that Ash doesn't notice but that is the name of the game in this house.  I wrote a couple of days ago how he now has 5 sets of identical clothes so that he doesn't have to make a decision on what to wear each day.  I also wrote about how I collect up dirty clothes and replace them with clean ones while he's in the bath.  If I just put the clothes in the wash he then has to find a clean set which creates a few moments of anxiety as he has to remember where his clothes are kept and a little effort on my part removes that stress.  I did it last night and watched this morning as he put the clean clothes on without noticing what I'd done and felt a wave of satisfaction.  He doesn't say 'thank you' as he doesn't realise what

Unconditional love and determination

Dementia is a very irritating thing when it enters your personal life.  There are the endless questions, the low self esteem, the feeling of inadequacy, the irritability, the confusion, the inability to live life at a normal pace ....... If you are living with dementia, in whatever form, you will know exactly what I'm talking about, if not then I hope you're getting the picture just from reading this blog.  To get through it all takes an inordinate amount of patience, planning, strategies (which I seem to be mentioning a lot recently) but most of all love.  I really don't think anyone can do this without feeling unconditional love towards the person with dementia.  If you don't have that how do you cope with the decision making, the responsibility, the organisation of everything  in your lives, the lack of back up when you're feeling low, the keeping one step ahead just to keep things on an even keel?  Unconditional love helps you do all of that.  You do however als

Activities or opportunities?

Those of you who've been following this blog for a while may have noticed that I used to work with children.  Now I support childcare providers and spend a lot of time advising practitioners that it really is better to provide learning opportunities rather than teaching activities.  An activity for teaching might be showing a group of children how to connect pieces of a train track and then move the trains around that track.  The children will watch and they may play with it for a while but I doubt it will stimulate them.  An opportunity for learning with the same resources might be to put out all the components of the train track and then leave the children to their own devices.  I can almost guarantee you won't get what you expect and probably won't even get a train track.  They might be set up to create a domino run, laid end to end to see who can make the longest line, stacked to see who can build the highest tower .....  It won't be what you think but it will keep

Strategies, strategies, strategies

As I've been reporting day after day recently Ash is so much better that laughter and joy are generally a part of every day living now and I thought you might like to know how we've got to this very happy place.  I have said before that I'm convinced it's strategies not medication (although I'm not saying that doesn't help) and those strategies involve me removing areas of stress from his life.  Examples are: Early mornings:  I set the alarm for 7am.  That way either I wake before the alarm goes off or we wake at the same time.  Either way he has no need lie panicking  that he doesn't know what's in store for the day as he can just ask me. Clocks:  We have two digital clocks, one upstairs and one downstairs both of which tell the date, day and time so he doesn't have to worry if he forgets. Grocery shopping :  we go to the same shops and in the same order each week.  We make a list before we go, write down what we want from which shop and then

Feeling very positive but .....

I love the fact that Ash is so smiley at the moment.  He seems to be getting back his enjoyment of life which has been missing for so long and that's wonderful.  The jokes and teasing have returned in force, there's conversation (not in-depth or exciting but it's there) and he even remembers some of the things I've told him.  BUT there is part of me which is waiting for this all to fall apart again.  Just as when we went on holiday in May and I was expecting to come home on day three now I'm anxious that one small thing could bring everything down like a house of cards.  However, looking on the positive side, not only did we stay in Lanzarote for two whole weeks those weeks were the start of the climb from the abyss to where we are now.  As we all know dementia isn't something you recover from but equally I haven't seen any studies showing how long it can be delayed.  Each case is so different that I suppose results, if we had them, would be meaningless anyw

The value of self esteem

Yesterday everything we did with the nearly 5 year old contributed to Ash's self esteem.  We needed him to set up zip wires, to tie knots, to get the guttering at the right angle for conkers to roll properly.  No-one else can do this like Grumps apparently and he was at an all time best.  Chatty, organised, assertive and able to make decisions just like he used to.  This morning it was time for lego building.  We'd been given a big box of lego and there was a picture buried in the depths of that box which the nearly 5 year old wanted recreating.  The difficulty was that the lego hadn't been touched for about 25 years, wasn't in any sort of order and some bits were missing.  The nearly 5 year old wanted what was on the picture but, for reasons beyond his control, Ash wasn't able to recreate the scene and the self esteem came crashing down.  It happened gradually so to begin with I didn't even notice but then I realised that conversation had stopped, there was no

Fun with the nearly 5 year old

Spent this morning at the beach jumping waves, collecting shells and making train tracks in the sand then this afternoon saw the nearly 5 year old and Ash creating a conker rolling system out of drainpipes and guttering as well as a zip wire using ropes, tree branches and a step ladder (for manouvering a bag of walnuts up and down).  The two of them are now flat out on the floor building a lego village.  A few months ago I posted after a day when Ash had spent hours building lego models with the little one but that was all he managed to do and there was no conversation to carry things along.  Today was so different I can't believe he is the same person.  Several people have commented recently on how much more like his old self he is and a friend asked today if I thought it was the cumulative effect of his medication.  My reply?  I think it is much more the consistent cumulative effect of Penny Garner's (Contented Dementia) strategies and the belief that a diagnosis of dementia

Being a realist

I'm sure that some people reading this blog think I live in a little bubble where I believe life is perfect, I have dementia conquered and everything will be all right in the end.  In reality I think that I am currently in control of our life the majority of the time, that I work hard to keep things as stress free as is humanly possible and that I live in the here and now while trying very, very hard not to look into the future.  I try to ensure we have a social life that Ash can cope with, I make sure I have a life independent of him and I try to treasure all the good moments just in case there are black times waiting around the corner.  I do therefore, contrary to what some people think, deal in realism and to that end yesterday we gave our ski gear away.  This was a bit of a wrench as it was most definitely a case of admitting that things are never going back to where they were.  I had tried to tell myself that we could go to an indoor ski slope but thought 1. I might be setting

An amazing birthday celebration

I'm sure that we all think of a diagnosis of dementia to an important person in our lives as the end of everything.  I certainly did.  It's now 10 months since we were given the awful news and sent on our way.  We sat in silence through the journey home and tried to work out what to do next.  I've said only recently that with the diagnosis come a vision of Ash sitting in a corner unable to communicate with the outside world but I really have discovered that, in our case at least, this really doesn't have to be the truth.  Elsewhere in this blog is a list of the strategies I've put in place and the daily posts have noted the ups and downs of our lives since last December but I am here to tell you that this weekend I have had one of my best birthdays ever.  On Thursday evening we went out for a meal with newly discovered friends where Ash not only joined in conversation but even started new topics, telling stories that made us all laugh; yesterday, which was the actua

New and unfamiliar can work

As reported yesterday we went somewhere new for a meal last night and. not only 'somewhere' new but with 'someone' new.  You really can't beat old friends who know you inside out and have been with you through thick and thin but new ones are also great.  New things to talk about, new plans to make and new surroundings to see.  Not only that but Ash was so relaxed.  I've noticed this on several occasions now and mentioned it to a friend who's known us for years.  She suggested that he's less anxious because there's no pressure on him to remember events or people from the past and I really think that could be true.  He's getting better with everyone and, apart from the odd blip, can cope with most social situations now but it really was good last night to see him not only join in the chat but also to begin conversations.  Onwards and upwards as they say and here's to more evenings like it.  If you're in a similar situation and are thinking

New friends are always welcome

Tonight we have been invited out for a meal.  That might not seem remarkable to many people and once upon a time for us it would just have been something lovely to look forward to.  This however is different because we have been invited somewhere new by people who don't really know us.  The important thing here though is that they do know Ash has dementia and have invited us anyway.  When dementia enters your life if you're lucky the vast majority of your friends will continue to include you in invitations, you will still be able to attend village events and your social life will carry on much as normal for as long as possible.  That has happened to us and I am very grateful however for someone new to invite you to their house is mind blowing.   They really don't know us and we have no friendship history to fall back on so they are just taking a chance that we will act normally, that the evening won't be too difficult and that we might even all like each other at the en

Patience is a (newly found) virtue

I am learning patience when dealing with Ash but if you mention how patient I am to Jake he will probably double up laughing.  Patience has never been my thing not when he was a baby or when he was growing up or even when I was running any of the nurseries I've been involved in over the years.  I loved managing the nurseries but if you ask anyone who's worked for me over the years they will tell you that I was much better at the management side of things than I was at working with the children for any length of time.  I think I was quite good in small bursts but not for days on end.  Now however I am learning how important it all is.  If I rush Ash it confuses him; if I pretend not to mind how long he is taking over something he will see through me and become anxious; if I comment on something not done his self esteem is damaged more than I could ever have imagined.  Over the past few months I have come to recognise all of this and also to realise that being impatient, in any f

Staying the course

I had a conversation with someone yesterday which set me thinking.  She is in a similar situation to me (not quite but almost) and we were discussing how surreal life can sometimes get when living a life affected by dementia.  The length of time it takes to wash up, the washing up of pots that could go in the dishwasher (one of my pet hates for some reason), the looooong explanations as to why something hasn't quite gone to plan, the sudden realisation that you're watching the fifth quiz show of the evening, the circular conversations that there can seem no way out of.  All of this was the same for both of us and the relief of finding out we weren't alone enabled us to laugh about it.  Then she said something which really made me think.  Following the diagnosis (slightly different in each instance) we made a choice to stay.  This is something I really hadn't thought about but it's true.  Nobody made us decide to see this through, nobody locked us in the house and or

Not necessarily something to be feared

I read today that dementia is our most feared illness even more than heart disease or cancer.  I can relate to that as, for the three months following Ash' s diagnosis, I was more frightened than I have ever been in my entire life.  More frightened than at the top of a mountain ready to ski down when I realised I was scared of heights, more frightened than the time it dawned on me that  I had no way of stopping my pony as it took off down the road with me hanging on for dear life, more frightened than when I was pregnant and realised  I was actually going to have to be a grown up for the first time in my life .......... There have been so many times over the years when I have been frightened but nothing compared to those feelings of pure panic as I thought of what life had in store for us as Ash got progressively worse because that's what happens to people with dementia isn't it?  One minute you're both enjoying life as you plan what your're going to do with the yea


Ash was hunting for something in the loft this morning and found a box of photos we hadn't seen for years.  Going through them we found photos of the two of us as teenagers: some of Ash before we got together, one of him on the school ski trip where we first met (how fashions have changed), some at the Royal Wedding street party the year before we got married (again, how fashions have changed) and some of us with his parents in a tent neither of us remember.  It was wonderful.  We both looked so young and full of fun with our whole life in front of us and once again I was reminded of how things used to be.  Over 40 years ago now.  Before Jake, before Max (the dog), before this house, this village and, mostly, these friends.  We had no idea how things would work out but looking back over those 40 plus years there aren't many things I would change.  This thing called dementia that has entered our lives is just one more addition to the layers that we have built together over the y

Sometimes you have to push just a little bit

I spend a lot of my time nowadays accepting life as it comes because this is what keeps stress levels low and helps Ash to function at a relatively normal level.  This means that we shop on the days he wants to and in the shops he knows, we generally watch the quiz shows he likes and he walks the dog in the village wood every day.  However he doesn't get things all his own way.  In an evening he now watches a quiz show from 5pm - 6pm (this is the man who once upon a time wouldn't be inside until it got dark), the news from 6pm - 7pm, a quiz show from 7pm - 8pm and then I gently put my foot down and we watch something else.  Whatever it is it's never very exciting but at least it's not a quiz show.  Saturday mornings we go into the local town to buy the paper and have a coffee at one of the cafes, sitting in the window to watch the world go by, then come home.  Today I suggested that after the coffee we went to have a look at one of the new housing developments just to b

Recovering my positivity

Listening to that answerphone message three days ago seems to have been a watershed moment.  I have been very positive for quite a while now especially since discovering the Contented Dementia Trust and Young Dementia UK.  Both of those charities have been more supportive than I could ever have imagined and just knowing they were there made all the difference.  Having said that the last few weeks have been a struggle for some reason and I was beginning to think that I was going to live the rest of this experience in an ever increasing uphill struggle against despair.  I don't like despair and have rarely in my life succumbed to it so this was totally unexpected and to be honest I didn't know how to handle it.  I really felt as though I was imagining how good life used to be, that I had turned Ash into something he had never been and that our relationship had always been like this.  That message, which I have now listened to several times, made me realise that what I thought was

Being caught unawares can be a good thing

Yesterday I talked about how I was caught unawares when I listened for the first time to a voice message recorded by Ash before dementia set in.  It knocked me sideways at the time because of the contrast between him then and him now however after I'd caught my breath I thought about that recording again and again and finally plucked up courage to listen to it once more this afternoon.  That second time of listening was actually, I decided, quite lovely.  I have written a lot about what good fun he was, how he made me laugh all day every day, how he liked to surprise me and how he always made me feel good about myself but recently I've found myself wondering whether I'd imagined it all, whether it had been a dream or whether in my mind I'd created something that had never existed.  That answerphone message made me realise all over again that we did have something amazing and we had it for a very long time.  Now I think we still have something amazing but it's differ

Beware being caught unawares

When you live with someone day in and day out you really don't notice minor changes until you are at the point where you know in your heart of hearts that something vital has changed.  I knew that Ash was permanently anxious, I knew that he was acting out of character and I knew that life was different but I wasn't really aware how much we had both changed until very recently.  Today he had left a message on my phone asking what he should do with a washing machine full of wet clothes.  He asked me to let him know and then said that if he didn't hear from me he would leave them in the machine to deal with when I got home.  I listened to his voicemail and then phoned him.  What took me unawares was the message on our home phone saying that no-one was there to take my call.  Ash recorded this message at least five years ago and I hadn't listened to it since then as, usually, when I realise he's not there I hang up. Today for some reason I carried on listening and what

Heated discussions aren't worth the effort

On Saturday a heated discussion began in our house and my heart sank as I knew I could and should have avoided it.  I have no idea now how it started but apparently I am always on the laptop, I never listen and I am always rushing around 'doing things'.  I have to hold my hands up to two of those things but I have my reasons for each one: I am on the laptop a lot as two days a week I'm working, mostly to pay for all the things that Ash's odd jobs used to pay for but also because I write this blog and that's what keeps me relatively clear headed about what's happening to us.  It also gets me out of the sitting room in the evening when Ash is on his 4th hour of watching quiz shows.  I don't want to stop him as he answers an awful lot of the questions still and it's good for his brain but there is a limit to my capacity for them. I am always rushing around doing things but for several reasons.   Because we do so much together I need to be with friends

The joys of relinquishing responsibility for a while

This morning Jake came over so that he and Ash could go for a walk complete with dog and cameras.  The weather was glorious, the dog was excited and Ash was anxious although he tried hard to hide it.  Think this is the first time for months and months he has gone anywhere other than the local town or the tip without me and he obviously found it a little daunting.  However he went and I had two whole hours to myself without having to worry about him.  The sense of relief was greater than I would ever have believed possible.  It was as though a huge weight had been lifted from my shoulders and everything seemed brighter.  This did feel odd as I hadn't realised how much I was struggling but think that's so often the case.  When you are in the middle of  a situation you plough on.  It's only when you have time to lift your head and look at the view that you realise how difficult things have been.  Anyway the walk was a success on all sides and there will be more of them apparen

Making decisions

Lovely start to the day with a birthday breakfast for S involving family, friends (isn't it a lovely thing when those two descriptions mean the same) and the nearly 5 year old dressed as Robin Hood.  After breakfast it was into town to buy a new wiper blade for the car and Ash managed to take the old one off and fit the new one which was excellent.  This might seem an insignificant event but I hold my breath each time he attempts something he would have in the past done without thinking and am always relieved when he shows some of his old skills.  Then it was home to see if anyone had looked at yesterday's post on here.  Around 150 people had and some of them might be you in which case I just hope that you accepted the challenge and have had a go.  It's not easy is it?  A friend told me yesterday that following our last conversation on strategies for dealing with dementia she had tried not using questions.  Tried but failed apparently so I thought we might go through a typi

A challenge for you

It is so hard trying to explain to someone what it feels like to lose your best friend to dementia.  I realise it's not the worst thing to happen in life but it can be quite soul destroying especially in the beginning.  Once you realise what's happening and start making adjustments to your expectations, thinking and behaviour (and it has to be you that make those adjustments) things start to get easier but life is most definitely different.  Anyway I thought that maybe you might like to join in an experiment, just for half a day if you like but a whole day if you think you can.  This is for anyone who isn't currently living a life affected by dementia (or not that you yet know about).  There are rules of course: Decide which of you is the person with dementia then that person can spend the day doing what they want when they want with no thought for or awareness of anyone else.   The person with dementia can't start a conversation. You must not ask questions.  Nothi

Be careful of your memories

It's been a difficult few days (not with Ash just life in general) and yesterday grief flew out of nowhere and knocked me sideways taking me completely by surprise.  It followed me all day, sneaking up and attacking me just when I least expected it but I had no idea where it had come from.  I have signed up to a facebook group which sends me positive quotes on a regular basis and I feel better each time I read one but yesterday they didn't help, in fact nothing helped and I was at a complete loss with what to do.  I struggled through the day, managed to get a grip in the evening when I went out with friends and felt better by the time I went to bed but I was concerned.  What to do?  I'm not one for counselling or talking things through with friends but no other options presented themselves.  I was still at a loss when I woke up this morning however 9.30am saw me driving in the sunshine through the Lincolnshire Wolds singing along to Dolly Parton on the radio and very little

The up and downs of living with dementia

On Sunday I spent a couple of hours quietly clearing moss from the cobbles at the back of the house while Ash spent his time watching 'The Chase' on tv.  This is something he would never have done BD (before dementia).  He was always the first to be outside getting on with jobs and I still can't quite believe that before I understood what was happening to him I thought he was just being lazy when he sat playing games on his computer.  Now I just find things to do and keep myself busy leaving him to be content with life.  The up side of this is that he's started coming to tell me what's going on in whatever programme he's watching and on Sunday he made me laugh out loud at least three times with his comments.  In fact he was so much like his old self that I almost forgot.  In contrast I came home yesterday evening after a day sorting out my mum, put the tea in the oven, set the timer on the cooker and then rang Jake to tell him how well my efforts with his grand

There is always a solution if you look hard enough

Not only do I have Ash to consider but there is also my mum.  She is 89 (shh don't tell her I told you) and hates being on her own.  She lives in a village, goes out for lunch three times a week and has friends to talk to but no-one can take the place of my stepdad who died nearly three years ago.  I have tried everything from getting her to take up sewing again, persuading her to organise a scrabble group for her friends, suggesting she phones friends who have moved away etc etc.  Each one has worked really well briefly but then fallen by the wayside until I was at my wits end.  Luckily I don't give up easily so last week, after putting my brain into overdrive, I suggested we looked for a care home where she could go one day a week to join in activities and chat to people.  Now she might be 89 but she in no way considers herself ready for sitting in a corner of a home unable to think but she agreed that I could look (mainly I think to shut me up).  Well I would like you to kno