Memory for two

I forgot to record this amazing event on Monday night so thought I would do it now before it's relegated to the back of my mind.  Last week I took my mum to the (not so local) hospital to have a small growth removed from her cheek.  I then made an appointment to take her to her surgery tomorrow (a week later) to have the stitches out.  Since then every night when I've phoned she's asked whether she should go to the doctors to have the stitches removed!!!  One night she asked when she should take them out which put me in a slight panic.  Anyway every night I've told her that 'I'm coming over on Thursday to take you to the surgery to have them removed'.  On Monday night I went to my book club and came back late for Ash to tell me that my mum had rung asking what was happening 'tomorrow'.  Ash said that he explained that I was at work the next day and that I was taking her on Thursday to have the stitches out.  This sounds like such a normal thing b...

.....and that's the dog.  Some evenings Ash can't remember whether he's fed Max or not.  Think the pooch has worked that out and so almost every evening he sits gazing at Ash to see if he can get a second helping.  Sometimes it works and sometimes it doesn't but tonight I think it did.  Have suggested double walks tomorrow just in cast it was a double helping! Keeping with the animal theme I'm also a happy bunny.  Sometimes when I've been at work all day I get home to find that Ash has spent his time trying to work out what he said he'd do and, in the process, not doing anything at all.  Today I got home to find that he's cut the hedge, finished painting the patio chairs that I'd begun yesterday and cleared all the weeds from the patio.  AT this rate we might be ready for Open Gardens after all.

After the hiccup yesterday morning we've had a brilliant two days.  The village 'Open Gardens' day is on 17th June and ours is one of them meaning we have some work to do to get everything looking smart after several years of doing the minimum we could get away with.  I have the attention span of a gnat (or a goldfish depending on your preference) but have just spent 4 hours(!!) fence painting and I have to say it looks very smart.  Ash needed to mow in the churchyard but was getting very stressed as he couldn't work out which bits needed mowing and which needed strimming.  That problem was solved by our amazing neighbours who sorted it all out so that Ash only needed to mow which he could get his head around and so he relaxed.  That was all he did but my expectations are lower now so it doesn't matter and I don't get worked up about it. Not long after we first got married we bought our own house and started decorating.  I had painted a door and was just ...

This morning I nearly blew it.  Really thought I'd got the hang of everything and we've been having such a good time.  Yesterday we spent the day with Jake, Sharon and Archie (4 year old who lights up our lives) and there wasn't a moment of stress, not before we left home, on the journey or at any time during the day.  Ash helped Jake put a tent up in their garden, Archie spent the day hammering tent pegs into the ground, we had pizzas cooked by Jake in the pizza oven and the dog behaved himself while  Sharon and I chatted.  I should have known it couldn't continue but but every time we get to this point I'm lulled into a false sense of security. This morning we woke up to beautiful sunshine and Ash asked his usual question of 'what are we doing today'?  I instantly forgot everything I've learnt over the past few months and launched into a list of jobs that need doing before 'Open Gardens' in the village on 17th June.  Result? instant panic on ...

Last night our local pub re-opened after around two months of renovation work.  At the beginning I asked if Ash could go and take photos as he really needed a focus to his days so  he's been going up every day and has got to know the workmen really well.  Last night we went and joined the throngs eager to see the transformation and, for the first time in a very long time, Ash left me and went to chat to people.  All of those workmen were there and everyone was greeting him like a long lost friend.  All of a sudden he had his confidence back.  He chatted, laughed, made jokes and was suddenly just like his old self.   What a wonderful feeling for both of us.

I used to think that I was one of the luckiest people I knew.  We had good friends, a great social life, wonderful family life, and lots of fun.  Most days Ash made me laugh from the minute we woke up to the minute we went to bed (not every day - that would be weird).  Then a few years ago everything started to unravel.  we were let down in a big way by people we thought of as friends and as a result our finances went into free fall and I was working 16 hour days just to keep things on track.  We both changed but looking back I think I changed far more than Ash.  I thought I had just put my head down and got on with things but the stress went far deeper in both of us than I realised.  Numerous times since then we have each shouted at one time or another 'why can't you be like you used to be?'  Now we've been plunged into this latest chapter in our lives I know that Ash can't change so it's down to me.  The holiday gave me time to step back an...

A couple of months ago I bought a clock which showed the day, date and time.  This was because Ash panicked every morning because he didn't know what day it was and I thought that would solve the problem.  It arrived in the post and he was really pleased with it until I made the mistake of mentioning that I had also ordered one for my mum (aged 89)!  At that point the clock was placed on top of a cupboard in the kitchen and ignored.  When we got home from holiday I said I was ordering another one for the bedroom as in the middle of the night I couldn't see the time on our clock radio (true).   The new one duly arrived yesterday and was set up in the bedroom.  This morning we woke up and the first comment was 'that's brilliant, I know what day it is'!  Not sure whether this is just the new, relaxed husband or whether he'd forgotten that he was refusing to use the original one but whatever the reason we are both more relaxed.  The message here ...

Last Thursday evening saw the boiler refusing to switch off, Ash's door keys refusing to show themselves and his mobile phone refusing to switch on.  Pandemonium beckoned.  Would this be the total undoing of the the amazing benefits of days of sunshine and nothing to do?  Thankfully not.  Everything was dealt with and life settled back into what seemed to be a normality we haven't seen for at least 2 years.  I even started to relax and thought that maybe, just maybe, there had been a misdiagnosis.  Then I got a message from our accountant.  We're in the process of closing Ash's business (part of the process of removing layers of stress from our lives) and he'd taken the final books to the accountants in our local town.  The message left on my phone said that Derek the accountant was a little concerned as Ash had dropped the paperwork off and left the building only to return twice as he couldn't remember where he'd left his car.  I'd been at t...

Fantastic day today.  A couple of months ago Jake and I went to the Cotswolds for two days to attend a course run by The Contented Dementia Trust ( http://www.contenteddementiatrust.org/ ).  The course was amazing and was the beginning of a whole new way of living with dementia in this family and a desire to tell the world about the strategies we learnt and the fact that the diagnosis isn't the beginning of the end just a new way of living.  I'm discovering new facts every day about dementia in all it's differing forms and the most surprising has been that there are six people living in my small village with that diagnosis (out of a population of 147).  Who knew? I mentioned this to Penny Garner who is the driving force behind the Trust and she suggested that we could become the first dementia friendly village in the country.  To that end I agreed a date when Penny and her team could come up to Lincolnshire ('is it near Suffolk?' she asked - right side of t...

It's not until you have had two whole weeks of nothing to think about and nothing to do that you realise how stressful real life can be to someone with dementia.  Back home yesterday to find boiler not working properly then just as we were going to bed Ash couldn't find his keys which sent him into orbit.  This morning his phone is fully charged but won't work and he can't work out what day it is.  Guess what, the stress levels are back to normal and there are no jokes, smiles, chit chat or decision making.  For me, after two weeks of strolling to the sea front for coffee followed by lunch followed by a stroll to the pool for a spot of sunbathing and/or swimming I have been tilted straight back into reality.  Doctors first thing for Ash's hypertension test (which he passed with flying colours) and then to the supermarket to restock the cupboards.  Back home to hang the washing out then over to my mum's to get her leg dressed at her surgery, then to the su...

Two weeks away with no stress or strain, great journey back, again with no stress or strain then get home to find the boiler seems to be on all the time.  Supposed to switch off at 7pm but still on with radiators going full blast an hour later.  I point this out and Ash goes into full stress mode!  However I've learnt over the past two weeks and shut up immediately.  will phone the plumber tomorrow.

Well that's it.  Two weeks of sunshine and relaxation have come to an end and tomorrow we head for home.  This holiday has made me realise that I need to slow life down at home and cut out the stress but, having looked at my diary for the first time in two weeks, this isn't going to be easy.  Not at first anyway but am determined to hang on to what we've just had for as long as possible so I need to get through next week and then I'll have a rethink.  Whether I'll be successful or not remains to be seen but nothing ventured, nothing gained. I've also realised how helpful keeping this diary has been.  Without it I would have been tempted to think I'd imagined all the stress in the lead up to the holiday but I can read what I've written and see how far we've come.

One of the things I have found heartening about the news of Barbara Windsor's Alzheimers is that she was diagnosed four years ago and it's only now that her husband has found it necessary to tell the world.  A gut reaction for the vast majority of people is that a diagnosis of any form of dementia is that it is the beginning of the end and this was certainly my initial reaction .  However this holiday has made me realise that what is most important is for me to watch closely and make notes (mentally if not physically) of what helps make life easier then put what I've learnt into practice.  I can't change what's happening but I can change how I feel about it and how I approach it. 

Today was wonderful.  Relaxed and stress free just like holidays used to be.  so much so that I spent quite a lot of time working out how to carry that feeling back into real life and really believing I could do it.  Then I phoned my mum.  She gashed her leg in three places just before Easter and those gashes are refusing to heal so I've been taking her to the surgery twice a week which is a 2 hour round trip for me.  That's been ok and while we've been here a friend has been taking her so that's been ok too.  I had arranged all of her appointments up to and including this Friday and had organised our first day home around that Friday appointment.  Tonight she tells me that she's going next Monday instead when I can't take her.  She's not sure either whether Friday's appointment has been cancelled or not!  Having spent the day chilling with Ash and believing that life at home will be manageable for a while at least one conversation with my mu...

 I had a rubbish night's sleep last night but, as I've learnt, it's best to tell Ash that I slept well when he asks.  So when the question came this morning I was ready with the positive reply then found that as the day went on instead of thinking about how little I'd slept I didn't give it another thought.  Usually I would have been dead on my feet but today I felt fine.  Proof that positive strategies can produce more than one positive result I think.

I've been told that if your person with dementia keeps asking the same question it's because they haven't been given the answer they want.  At home Ash asks me each morning whether I've slept.  I then tell him in detail about my night ( I've usually been awake for a couple of hours at some point and have often gone downstairs and onto the computer).   He will ask that question several times and I usually repeat the answer I first gave in the belief that if I repeat myself often enough he'll remember what I've said.  It never works!  After a couple of days on this holiday I decided to see what would happen if I just said 'yes'.  Did that for three mornings and found that each of those mornings he only asked the once.  This morning I forgot so when he asked my reply was 'no not really, my sunburn was hurting'.  He then asked the question again and again until I changed the answer to 'yes'.  Then he stopped asking.  Not sure it was the...

Have had suspicions over the last few days that the 'follow by email' gadget hasn't been working properly on this blog but, being a technophobe, had no idea what to do about it.  have now fiddled about, pressed keys on the laptop and am hoping it's working but we'll see.

Yesterday I had a look at a forum I signed up to at the beginning and someone was complaining about people saying the wrong thing and everyone offering to help but not coming up with the goods.  My feeling is that none of us know what to say in a situation we're unfamiliar with and none of us knows how to help if we don't know what will be useful.  To combat this I've organised a talk on dementia in our village in the hope that a few of our close friends would sign up.  The limit was 20 but 5 or 6 would have felt good.  It's in just over a week's time and we have the full 20 with a waiting list.  People do want to help and they do want to know how they can be there for us we just need to make sure they have the information.  I have also found that if I need help and I'm specific about what's needed then that help is there.  None of us are mind readers and we shouldn't expect other people to be either.

Yesterday I said that on the surface it can seem that everything is back to normal and then a random comment will come out of nowhere and show me it isn't.  Tonight was a prime example.  We've had a brilliant day: morning coffee down on the seafront, sunbathing on the terrace, reading, listening to the radio and, to top it all off, we hear that friends have found a new truck for Ash which makes him so happy he can't stop smiling.  We go out for a meal and I actually begin to think that maybe there's been a mistake and it really was anxiety all the time.  Then we get back to the apartment and he can't find the tea bags so is adamant we've run out.  This is followed by complete stress because he thinks he's lost all of the photos he took this evening (he didn't take any).  He's now relaxed again and all is well with the world but I know it's not just anxiety. On the bright side we do have a new truck.

Seven days ago I was panicking that this trip could be the biggest mistake I had ever made.  At that point I would have settled for Ash not pacing the floor all night at the airport hotel, for not freezing in terror as we went through security and for not getting lost inside the apartment or out.  None of that has happened and he's been more relaxed than I've seen him in months if not years.  So am I satisfied?  Of course not.  He doesn't lie in bed in a morning rigid because he doesn't know what day it is, he doesn't shout because he feels I've made him look stupid, he doesn't sit crying and asking 'what's wrong with me?' but still this holiday isn't quite the same as it would have been.  He's making me laugh, he's talking to me and he's interested in every day things but every so often some random comment or something he does pulls me up short and then I realise that nothing will ever be the same again.  However  the whole point...

A normal day at home begins with Ash rigid with fear as he asks 'what day is it'?  followed by 'what am I doing today'? then a panic that means we have to get up so he can look in the diary and try to work out if he's forgotten anything (this can sometimes be as early as 5am).  This morning it was 'what are we doing today'?  The answer from me was 'nothing'.  His reply?  'I'll go and make a cup of tea then'.  Some of you will know what a relief this is while others can maybe only guess.  I was so worried about how this was all going to turn out and had numerous sleepless nights in the run up as I wondered whether I was doing the right thing by taking him away from everything that is familiar.  Turns out it was the best decision I ever made. The other thing I've learnt this morning is that it really is best to keep answers short.  Jake and I went on a course at the end of March to learn more about dementia.  It was run by a small cha...

Don't you just love the internet.  I've heard that some people have subscribed to this blog and also that some have left comments which is all brilliant.  What isn't quite so brilliant is that the part of the blog which should tell me that isn't working so I have no idea whether you're able to follow our adventures or not.  I have a great friend who knows lots more than I do about all of this and she's working hard to sort it all out but until she does I wanted you to know that if you want to get in touch you can email me at memoryfortwo@gmail.com.  If you have anything positive you want to share with people about your experiences with dementia please let me know and I can add it.

... and still going strong.  Still chatty, still making decisions, still people watching and I'm sure it's because all stress has been removed from daily life.  Usually the first question of the day is 'what day is it'? closely followed by 'What are we doing today'?  This morning he did ask what we were supposed to be doing but when I said 'nothing' there was nothing left to say and nothing to get worked up about.  Now just need to work out how to translate this into real life.

...... that life could suddenly become become so much fun after months (if not years) of stress.  Have found a bar on the seafront where we can sit on the balcony and watch the world go by beneath us.  We don't drink alcohol anymore so it's tea for Ash and cappuccino for me but the people watching remains the same and there are certainly sights to be seen.  We have begun to have conversations again and he makes me laugh just like he used to.  Not sure if all of this will survive a return to the real world but for now it's enough.

Can't quite believe it but we've had another stress free day!   Up early and got to the airport with plenty of time to spare which meant we had a leisurely breakfast.  Fast track through security was well worth the money and then got to the departure gate without a rush so no problems there.  only downside to the trip was that the plane was full to bursting and there seemed to be a toddler in every other row.  Not all of them were used to flying.  Out the other side and straight into a taxi to the resort.  Long may this continue.

Strategies have worked really well for the first day.  No rush before we left home, great drive to the airport, cup of tea then a stroll down to the restaurant for evening meal before back up to the room to watch a couple of quiz shows then bed.  No traumas, no stress, let's just hope tomorrow goes as smoothly. 

For the first time in 33 years I'm packing Ash's bag to go away.  The upside of this is that I get to choose what he's going to take and you've no idea what a plus that is!

Today had the potential to be a complete disaster but, like most things you're not looking forward to, things turned out quite well.  Had to take my mum to the hospital this morning and then to the surgery this afternoon (gashed her leg 4 weeks ago and it's refusing to heal so she needs to get it dressed twice a week).  Last night she informed me that the hospital appointment had been cancelled and she knew this because she'd crossed it off her calendar!  This was a surprise as it was still on the calendar when I was there on Friday but it was too late to ring the hospital and find out and we would have to set out before the department re-opened so we decided to go anyway.   Lucky that we did as, when I phoned the hospital on the way over, they still had her down for her visit so no idea what happened there.  On top of that I'd decided to tie my visit in to Ash mowing her field which he's been putting off for weeks.  He was completely silent until we'd...