Memory for two

Those of us who live alongside dementia or care for those with dementia know that self esteem is the key to everything.  If your loved one feels good about him/herself then all is right in their world and, conversely, if we fail to boost that self esteem everything very quickly comes crashing down and nowhere can this be seen more clearly that with the rickety table Ash fixed to the back wall to support the hose pipe.  As I said when it first went up, it's not the best thing he's ever created, it's not level, the legs don't match (they're not even standing at the same angle) and there are pieces of wood sticking out everywhere but he's so proud of it.  It's been admired from every angle, I've been called outside at least once a day to comment on it and it's done two jobs perfectly.  It's the perfect place to stand the hosepipe and it's boosted Ash's self esteem to the highest point it's been in years.  What I didn't realise though...

I think I may have asked this question before, albeit in a different guise, but here we go regardless.  Have you ever wondered what sort of person you're going to be when you're out the other side of this?  Have you taken this opportunity to reinvent yourself or have you just become more of the same?  Some people are patient and wise anyway which would really help when living alongside dementia while others had no patience before dementia came along and have even less now but who will you be and who will I be?  Before all of this I was one of the least patient people I knew.  I wanted everything NOW, I wanted life to be perfect and I wanted to be happy as much as was humanly possible.  The minute I was out of my comfort zone I turned into a screaming dervish and if I couldn't do something easily I handed it over and walked away.  Now if you know anything at all about dementia you'll understand that a personality like that isn't going to deal well with ...

When your husband/wife/life partner is diagnosed with dementia everything changes.  Make no mistake this change doesn't happen overnight, the road to the diagnosis is a long, winding and very lonely one as you watch the person you love turn into a stranger before your very eyes but you cope.  In our case I thought it was my fault, that there was something I wasn't doing that I should be or something I was doing that I shouldn't but whatever the problem of course it was my fault, the only thing was I didn't know what that problem was so I couldn't do anything about it.  Then you get the diagnosis and by that time your whole relationship has changed and it continues to change until it no longer resembles what you once had.  You're living with a stranger and you don't know how to behave so you become a different person just to accommodate this new being who now shares your life and all this happens so slowly and insidiously you don't even notice what's ...

Ash has always done the DIY in the houses we've lived in (only 3 in total but still ....).  he's self taught and I still remember the time I came home from work to find he'd taken a sledge hammer to the pantry wall and piled the bricks in the middle of the front lawn.  He then had to plaster the remaining wall to cover where the join had been but couldn't get the plaster to stick so watered it down and painted it on then wallpapered straight on top leaving a slightly less than professional finish.  He got better over the years and when we moved here just over thirty seven years ago there was lots to do.  Over the years he's replaced the kitchen three times including moving it to a different room once; redesigned the bathroom; plumbed in a utility room and shower room from scratch; knocked down sheds and replaced them with a raised brick patio and on and on until his 'piece de resistance' was to build a brick and tile veranda along the entire length of the ba...

Yesterday, you may remember, I joined some friends on the beautifully mown field in front of the house for a socially distanced coffee.  The sun was shining, my tan was topped up, we put the world to rights and discussed my birthday and I thought 'maybe this is the way forward'. I have a feeling you see that my coffees and mornings/afternoons out might be a thing of the past when this pandemic is over.  Before the lockdown I walked with friends two mornings a week and then it was coffee/lunch/afternoon tea on many of the other days.  I had realised that whole days out were a thing of the past but it seemed to me that if Ash was only on his own for half of each day everything would be ok.  Now however he's had my undivided attention almost all day, every day for the past nine weeks and it seems he's got used to it.  So yesterday I sat 100 yards from the front door, he could see me out of the window and the whole thing lasted for an hour and a half, what could pos...

Out this morning on the field in front of the house for a socially distanced coffee with friends when suddenly the question was asked 'what are we doing for your birthday this year?'  Other friends had asked the same question last Friday and I realised I had no idea.  It's a big one you see and birthdays, even every day ones, have always been important in this family.  Even now Jake, whose birthday is in June, will start planning the celebrations as soon as we head into Boxing Day.  We've always planned surprises for each other and we've always done something special except that since dementia entered our lives we haven't.  Now Ash would hate doing anything exciting or out of routine for his special day and equally he'd find any special celebration of my birthday very stressful so I've begun to put them out of my mind.  A few years ago, before dementia, I had given this one some thought (don't panic, it's not until October) and decided that what ...

If you're very lucky, before dementia enters your life you share that life with someone you love, someone who makes you happy, someone who makes you feel good about yourself.  That special someone will put his arms around you just because he wants to, he'll give you a kiss just because he loves you and he'll hold your hand because he wants to feel connected to you.  All that happened to me but sometimes I didn't appreciate it.  Ash didn't always pick his moment perfectly.  Sometimes he'd want a kiss when I was dishing up the tea; sometimes he'd want a cuddle just as I was leaping out of bed, late for work; sometimes he'd want to hold my hand as I was trying, with fear in my heart, to negotiate my way along a boggy footpath so, as you can tell, sometimes I shook him off or turned away because the time wasn't quite right.  What I've learnt over the past few years is the importance of enjoying those moments; of embracing, in more ways than one, the ...

We had a socially distanced village coffee morning this morning on the field right outside our house.  Everyone arrived bearing chairs, coffee/tea, cakes etc, we all stayed 2 metres apart and it was lovely.  Really wasn't sure how Ash was going to cope but he stayed for the whole two hours and took photos of the event.  Have now put those photos on the village fb page and keep showing him the lovely comments so he's quite fluffed up with pride.  The sun shone, we didn't get blown away and it was all great fun but not only that, mixing with other people and knowing he'd coped in his first social situation for a while seems to have done wonders for Ash's self esteem.  This afternoon then I've been sorting through old photos.  I started this huge challenge when I thought Jake ought to have some to remind him of the things he did with his dad when he was growing up (and they did a lot together) but also in order that the 6 year old will have an idea of the sort...

Two weeks ago Ash decided to give up driving and that was something I didn't think I'd ever see.  Driving you see has always been part of who he is both at work as part of his job and at home as the man who seemed to know every short cut, every motorway services and every back road in the country.   If we got stuck in a traffic jam it was ok because he knew a way round, if we were running low on diesel it was ok because he know where the next service station was and on and on.  In 2017 I was asked to run a project at work which involved driving to the other end of the country by myself several times over a period of nine months.  The first time I had to go I walked out of the house crying because I was so scared.  Before that the furthest I'd driven was probably just over a hundred miles but this job involved me being a grown up, travelling to a part of the country I'd never visited before and one which involved a six hour drive in each direction.  In ...

Had my second run of the week this morning and just wanted to tell you it was ok again.  The very first time I did this was in Florida last year.  I decided to start then because I figured it would be warm, there was a proper running trail in the resort, it was flat and, most importantly, no-one would know me.  It was all of those things so I wasn't disappointed but what did take me by surprise were the signs warning to watch out for crocodiles and snakes - you don't get many of those in Lincolnshire.  What also took me a little by surprise was the fact that, after the first one minute run/shuffle I thought I was going to die.  I couldn't breathe, my legs ached and I had another seven of them to do.  I still have no idea why it took me by surprise because the last time I did any sort of running other then after a toddler was forty years before when obviously I was a lot slimmer and a lot fitter.  Anyway I struggled on for the two weeks we were there an...

In this new world of social distancing it's all too easy to retreat behind closed doors especially, as in our case, when the one living with dementia is finding life much easier with fewer social interactions but it's really not healthy to live a life confined to just the two of us.  And so there are the weekly get-togethers, the video chats with different groups of friends in different parts of the country/world as well as with friends right here in the village.  You'd think that with lockdown, and that all important social distancing, coffee mornings would be a thing of the past but a group of us have been video chatting, coffee in hand, since the beginning of all this and then last week we decided to work out a way of getting together while still obeying the government guidelines.  You'll be pleased to know I'm sure that we managed it.  We each took our own chairs, coffees and snacks then sat with two on the pavement and two on the road and managed to chat undist...

Following yesterday's achievement with DIY in the garden involving two bamboo canes and a length of bird netting I was feeling pretty pleased with myself when I woke up this morning.  So pleased in fact that I decided to try running again.  Some of you may remember that last year I started using the 'Couch to 5K' app, in fact I started it twice but, as with a lot of things in my life, once it started getting difficult I gave up.  The idea is that you do 3 identical runs each week with someone in your ear telling you when to run and when to walk.  Week one consists of running for 1 minute, walking for 1.5 minutes, running for 1 minute etc until you've done 8 very short bursts of running and walking.  Each week gets progressively harder until, by the end of week 9, theoretically you can run 5K.  I wouldn't know about that because both times I've got going on the programme I've given up at the end of week 5 just when it starts to take just that little too much...

As you know I'm quite a newby to gardening and, for the first time ever, I've not only planted tomatoes but also committed to keeping them alive.  Only two plants so not overdoing it for a first attempt but I've been really pleased with the way they seem to be growing and I glow with pride each night when I'm watering and I see they've crept up in height just that little bit further.  Then this morning I go out to inspect them (in fact I may even be getting a little obsessed with the height bit) only to find that something's been pecking at the compost.  One of the plants is almost horizontal and compost is everywhere.  I looked at the mess and then did what I've always done in the past and went to find Ash.  He came out, looked and then we discussed what was needed to protect the greenery from the birds.  Next he went off to see what he could find to make some sort of a frame and I waited for him to wave his magic wand and produce the perfect solution....

I had the thought this morning that this journey through dementia might get a little easier as we go along.  I can hear some of you take a deep breath at this point and especially those of you already struggling with mobility, feeding, incontinence etc because obviously I don't really know what I'm talking about.  We're not at that point yet and I know that physically Ash is still very fit; he can still walk quite a way, he sleeps just like he used to, his appetite is just as it was but I wondered whether, as those skills diminish, it might be easier emotionally to deal with all of this.  At the moment you see I'm caught between two worlds and one of those worlds often fools me into thinking he's still here.  A quick joke, a smile, a suggestion that shows he's thought about me, all trick me into forgetting just for a short while that he's slowly disappearing from my orbit.  I grab those moments when they happen and then, every single time, I'm disappoint...

As most of the world remains in lockdown many, many people are talking about what our lives will be like when we've returned to some semblance of normality.  Will we still think nothing of jetting off across the world? Will we still be eating out?  Will all that home baking grind to a halt?  So many questions as we consider what we're living through and how but that has made me think about what I'll be like when I'm on the other side of this dementia affected life and I wondered if anyone else has considered how different they'll be.  Already I'm not the person I was. I'm far more confident and comfortable in my own skin; I'm more patient than I ever was before; I'm more willing to make decisions by myself; I'm far less selfish than I was; I'm able to face any dilemma with a commitment I didn't know I had and, most importantly, I'm able to face a life on my own without fear rising from my very depths.  What intrigues me though is how ...

So I think I've learnt, mostly, when to speak and when to be quiet but, as someone said on Twitter, it's then what to say and how to say it when it's time to speak and that I haven't quite got the hang of.  Yesterday afternoon we gathered our things together ready for a walk with the dog and Ash hadn't picked up a coat.  The sky was black and rain was forecast so I said, exactly as I had on a similar day last week, 'You'll need your coat'.  Last week that suggestion was met with 'oh, ok, that's a good idea', yesterday the whole episode turned into something from a soap opera with shouting, snapping and the information that he was perfectly capable of deciding whether he needed a coat or not and he definitely didn't.  I was stunned and hit by an emotion that I thought was anger and I felt guilty because I know he can't help it but that didn't make me feel any better.  So my 'anger' continued and the walk was a disaster as w...

Do you ever cast your mind back and try to remember what you talked about?  We rarely had deep and meaningful conversations but we did talk.  One or other of us would burst through the door at the end of the day full of what we'd been doing, who we'd seen, what problems needing solving and then, over a glass of wine or two, we'd talk and we'd listen and by the time we went to bed we'd be talked out.  In the summer we'd sit out in the garden until it was dark sometimes listening to the radio, sometimes reading but often talking and always together and I miss those times.  Over the past two and a half years I've learnt an awful lot including, mostly, when to talk and when to keep quiet.  In the old days we would wake in a morning and talk about the day ahead, now I keep quiet; I used to burst through the door with a thought I wanted to share, now I keep quiet; I used to ask for an opinion on everything and anything, now I keep quiet.  Interestingly the one th...

The past three days have been lovely as you've probably been able to tell but then came this morning and all was not well from the moment Ash drew back the curtains.  I sometimes feel I should know by now what the triggers are that pull him down into the depths and add confusion to his life for good measure because if I can learn what they are I can try and avoid them and sometimes I do.  I've learnt not to overload him with conversation; I don't suggest he does more than one thing at a time; I try to remember not to ask him questions and I always make sure his favourite programmes are on the tv when he needs them (if they're not available in 'real time' I've discovered that I can plug the laptop into the tv and find old episodes of The Chase or Pointless for him to watch).  So I do all of that and most of the time it works but this morning it was sheep and that took me totally by surprise.  Our bedroom overlooks a field and usually at this time of year that...

You may have noticed that our life at the moment is full of ups and downs, how one moment everything in the garden's lovely and the next I'm in total despair and maybe you, like me, are wondering why I can't just keep it all on an even keel.  I do try and most of the time it's ok but then, just as I begin to relax and start thinking we're really happy again, something happens and it all comes crashing down.  I've thought and thought about this as I do most things and really had no explanation until yesterday when someone got in touch to give me an idea of what she and her husband go through every so often and what happens when they're through it and I realised that she was describing my feelings and the events in this house.  When Jake was little I felt that we lurched from one phase to another and just when I'd got the hang of what he could do he was off into the next phase and could do completely different things.  I remember that at one point he could...

It's been a difficult week which culminated in a very, very bad day on Thursday hence no blog post.  However yesterday was absolutely lovely and the only reason that once again there was a post missing was that I ran out of time and that is never a bad thing.  Great video chat in the morning with two of my oldest friends who never fail to make me laugh out loud however bad I'm feeling, followed by a spot of gardening/weeding then up to the road to raise a mug of tea in memory of those who sacrificed themselves in WWII.  Ash joined in with the toast and the mug raising and I even put a dress on for the occasion.  Luckily the village is very spread out and not too many people to shock with the rare occurrence of me wearing something other than black trousers and black vest top so events went very smoothly.  After the toast we moved down the village to chat from a distance to friends we haven't seen for ages and it was all so jolly and relaxed that Ash stayed out f...

Yesterday was a really  bad day from the moment I woke up until around 5pm when I had a complete melt down.  The difficulty with experiencing something like that when you have dementia in your life is that the most important thing is not your personal crisis but the well-being of the one actually living with dementia.  As we're discovering, how I feel and how I react to life events has a huge impact, for good or bad, on Ash and so the need to escape to the other end of the house and hide myself away was what was needed.  I managed it and although he commented afterwards on the fact that I looked as though I'd been crying he didn't really want to know and whereas, once upon a time, he would have put his arms around me and held me tight yesterday he was happy for me to just shrug it all off and move into the kitchen to cook tea.   The good thing was that having cried it all away I instantly felt lighter than I've done for days and this morning I was able to f...

Bad day today almost from the minute we woke up and a fog descended on my brain which I couldn't seem to shake off.  Do you know that feeling?  That notion that things could be so much better but you don't know how to move forward?  Luckily relief came in the form of a video chat with friends where there were other topics on offer and things to make us laugh so, for an hour of my morning, life was almost normal.  One thing I'm quite proud of is getting Ash into the habit of coming with me for a decent walk every afternoon.  There's no conversation of course but, after managing to coax him around that first walk last week, he now comes without hesitation and without a shred of anxiety in sight although that last is only as long as we stick to roads and as long as, in his mind, the walk doesn't last longer than an hour.  The result of all this is that we're doing something together every day and we're keeping fit, as is the dog I might add! The walk this afte...

Social distancing is nothing new to most of us living alongside dementia.  Certainly in our case Ash rarely accepts invitations to go out and mix now as it's something he finds very difficult to do and so life has changed beyond all recognition.  In fact, looking back through old photos recently, I found it hard to believe that the couple smiling out from all those groups at village events, evenings in the pub, nights out with friends etc really was us.  We weren't in isolation then, we mixed, we laughed, we joined in, we had so much fun but we were different people.  So the lockdown hasn't affected us too much in that way but today I realised that there's another way we've remained unaffected too because social distancing has brought with it emotional distancing in that families are apart, hugs aren't part of their lives, cuddles are missing and, however good your internet speed, the body language and empathy between them and their loved ones just isn't the...

I've learnt some useful things about Ash in this lockdown partly due to being in close proximity to him all day, every day and partly due to our slower pace of life.  I've watched what he does and I've had time to work out why. I've learnt that he now prefers to walk along lanes instead of country footpaths and I think that's because he knows exactly where he is at any given time whereas I'm quite likely to get us lost on footpaths which makes him nervous. I've learnt that he'll walk any distance as long as he thinks it won't take any longer than an hour and a half.  If he thinks we're going to be out longer than that he wants to turn back after ten minutes because it's too far. I've learnt that his knee doesn't hurt if we walk on lanes for no longer (in his mind) than an hour and a half.   If we walk on footpaths and he's not entirely sure where we are his knee begins to hurt. I've learnt that he's comfortable wit...

The day started off really well with Ash waking with purpose and enthusiasm as he announced that he needed to go up into the loft to fix the dripping overflow he'd noticed yesterday.  My enthusiasm for the project was a little dampened by the fact that getting into the loft involves a tall ladder and a screwdriver.  The entrance, you see, is on the side of the house which involves climbing the tall ladder then using the screwdriver to undo the screws holding the small narrow door in place.  Once upon a time the door was on hinges but for several years now we've used the screws and screwdriver option which means the whole thing takes a little maneuvering.  I said nothing however as I've learned along the way that suggestions of possible danger or advice about being careful only result in shouting and a rush at the job to prove it can be done so nothing to be gained in that approach but I was obviously more than a little concerned and went downstairs with a heavy heart...