Showing posts from September, 2018

Viewing life differently

Have just spent the last two hours cleaning moss from between the cobbles that run along the back of the house.  They cover the area under a brick veranda which Ash built 19 years ago.  He laid the cobbles too and every so often he's swept them (usually when Open Gardens in the village has been looming) but nothing more has ever been done to them.  This is a little like the ivy I've spent the summer clearing from the brick patio he built not long after Jake was born.  The wall now looks beautiful and the cobbles are moving in the same direction.  I was pondering my motivation in this (which is another way of saying I wondered what on earth had got into my head when I first started these jobs) and  think it is all to do with being able to see more clearly all the things Ash has created over the years.  Not long ago I would have thought of these jobs as mind-numbingly boring but now I find them therapeutic.  Over the past few months I have learnt to slow down and enjoy the moment

Becoming a grown-up

Last night I came to a momentous decision.  I had been pondering on it all day and was worried because I couldn't discuss it with Ash which is, contrary to what most people who know us thought, something I had always done.  It was a private joke between us that everyone thought I was the one in our relationship who made all of the decisions and that Ash had little or no say in what we did.  In reality we had such an equal relationship.  We discussed things and decided together but the truth was that most of the time he was happy to go along with my ideas.  If he didn't want to do something or he thought I was out of line he would say so but quietly and away from others.  You don't need to know what this particular decision was just that it came about because I was cross and usually that would have been enough for me to rush headlong into a crisis.  This time, because I couldn't rely on Ash to put the brakes on, I knew I had to think longer and harder about which way to

Rubbish day

This has been a rubbish day.  Nothing to do with Ash or the family but everything to do with the other two main aspects of my life.  The hardest thing is not being able to come home and talk about it all which is exactly what I would have done in the past.  I do know that he might not really have been listening to what I was saying but he would have pretended to and he would have given me a shoulder to lean on and that's what I miss.  It's very hard being a grown up on your own. Anyway tomorrow is another day as they say and at least I have discovered there are dementia services in Lincolnshire including the Dementia Friendly Support Service run by the council.  I found this by accident and would love to know why we weren't given any indication it existed back in December or even when I went to see the 12 year old GP a few months ago for some little white pills.  No-one has spoken of it and I'm beginning to wonder if it's actually a secret society.  I've now c

Happiness is up to us

I woke up this morning feeling a little sad at the way things have changed.  I started remembering how we used to be and what fun we had and all of a sudden I didn't want to get out of bed.  So what to do - lie in bed feeling sorry for myself (and 'us') or get up, pull myself together and get on with my day?  You may not be surprised to learn that I chose the latter.  I got up, made us tea (previously Ash's job), took it back to bed along with his tablets and then watched the sky lighten and turn pink as a new day beckoned.  I have told you in this blog about the time we traveled to the south of France with the tent and the dog, how everything that could go wrong went wrong and how at the end of every day we would list all the things that had happened and how they could have been worse.  I am using that experience in this life I have now.  Things could almost always be worse.  I may no longer have a husband I can rely on to get me out of scrapes; he may no longer be abl

Worrying is such a waste of time

Yesterday I was back at work after almost three weeks off and have felt sick at thought of it all over the weekend.  This wasn't at all because I don't like my job (in fact it's one of the nicest jobs I've ever had) but more to do with the fact that we have had such a nice time over the weeks I haven't been at work.  The minute I closed my computer on Wednesday 5th September and said 'that's it, no more work for two and a half weeks' Ash relaxed, in fact I could almost see him physically unwind.  From that moment it was as though he felt there was nothing to be anxious about, nothing to think about and nothing to worry about.  He didn't have to remember anything, he didn't have to think of things to do, he had no responsibility.  For twenty days he could let me do all the thinking that needed to be done and all that he needed to do was follow my lead.  Now you may think this happens anyway and you may have noticed that is the way I plan our lives


I now belong to two forums both supporting people with dementia in their lives and the difference between the two is quite astounding.  The first, which almost made me give up the fight the minute I joined it, seems to be populated by people who constantly moan about having to care for someone with dementia, how their life is no longer their own, how they didn't sign up for this etc. etc.  One post I read was from a lady who moaned that her husband (who had dementia) didn't take her a cup of tea in bed any more because he couldn't be bothered!  Not all posts are like this but too many are from people unhappy with their lot in life.  The second forum is much more positive.  There are photos of loved ones, genuine requests for advice (and equally genuine advice given), few rants and a positive vibe about the whole thing.  If I comment on a post on this forum it seems to be welcomed even if the comment is a little off the wall whereas when I have posted on the first one the po

A dementia friendly life continued.......

Yesterday I wrote about the importance of being part of a community that understands what you're going through and this set me thinking even more.  I have recently joined a facebook support group and I very soon realised that almost all of the photos added by members are of elderly relatives in varying states of incapacity.  Something else I realised is that this is most people's perception of dementia but it most definitely does not apply to my husband.  Ash is 59, physically very fit, mentally (mostly) with it but he still has dementia.  He repeats himself, he forgets things, his sense of taste is fading, he can't concentrate, he is easily confused and he can't learn anything new.  He can however hold a conversation, join in social events (as long as he knows the people he's with) and would not, under any circumstances, attend a group consisting of mainly elderly people.  He doesn't have anything against them you understand, in fact several of our closest frie

A dementia friendly life

No time to write yesterday as friends took over the day.  In the afternoon I went with a group to sing along to Mama Mia 2.  I realise that this might not be everyone's cup of tea but we had a ball.  We went to the local cinema (which was full) and sang at the top of our voices to every song.  There was even an interval ('how quaint' I hear you say) with time for a cup of tea before the second half where we sang even louder.  Came out feeling amazing. Got home in time for another cup of tea with Ash before we headed across the road to the village hall for the Harvest Supper.  We spent the evening with around sixty of our friends and neighbours eating sausage and mash, bidding for produce in the auction afterwards and having a brilliant time.  In many areas there are dementia friendly cafes and dementia friendly activity groups which I know are a great way of getting to know people if you don't have friends around and can also be a source of support as you meet those

Outing, outings outings ...............

This week has seen both of us (plus the dog) out in the wilds of the Peak Distict on Monday, lunch with my cousin at our local pub on Tuesday, coffee with a friend on Wednesday, grocery shopping (which always ends with coffee and croissant at M & S) yesterday and today I've been in  Norfolk with another friend all day.  The fun doesn't stop there as tomorrow afternoon I'm going with a group of friends to sing-a-long to Mama Mia 2 at our local Cinema, tomorrow night is the Harvest Supper in the village and Sunday is Harvest Festival in the church next door.  I did say a while ago that my aim was to accept (almost) all invitations that came my way and to do as much as I/we can while it's still possible and this week seems to have been a prime example.  On top of all of this when we woke this morning Ash had remembered not only what I was doing (trip to Norfok) but also what he had planned (taking garden rubbish to the tip).  When I got home he'd actually exceeded

The satisfaction of small steps forward

This morning we were both booked to have a hair cut at 10am.  I mentioned this when we woke up then thought no more about it for a while.  At 9.20am Ash came through to say he was taking the dog for his morning walk.  As this usually takes 10 minutes I didn't mention the haircut but assumed he would be back in time to leave.  When he hadn't returned after 15 minutes I started to panic, not because I thought something had happened to him but because I hate to be late for anything.  I phoned the hairdresser to explain and then started planning what to say when he finally got home.  If I got it wrong he would immediately plummet into the depths of anxiety, blame himself for us being late and be miserable for the rest of the day.  I knew  that he'd forgotten so decided to go by myself, leaving a note for him to say I'd gone to see a friend.  He wouldn't notice my hair when I got back and wouldn't be interested in where I'd gone so there would be nothing to expla

Keeping a journal

An article cropped up on my fb page today about the usefulness of keeping a journal when caring for someone with dementia.  It suggested keeping note of symptoms & care needs; challenging behaviours; eating & nutrition; toileting & incontinence; health & safety issues; medication effectiveness & side effects and information for medical appointments.  The idea is that by keeping this journal you will be able to spot what triggers problems and therefore help you avoid those problems in the future which in turn will make life better for everyone.  Making life better is obviously a good thing but what seems to be missing is the suggestion that there are things to record which will make life richer for all concerned.  There was no mention of 'joy'.  So, what to record?  I suggest one or all of the following but you may have others with which to create your own list: What makes your loved one laugh?   A comedian we both like is on at our local theatre in a coup

I'm learning

For the past two weeks the printer/scanner has refused to speak to my computer via the airwaves.  The computer would work plugged in but the scanner wouldn't even do that.  Today when I mentioned buying a new scanner Ash decided he would fix it!!!  Not too long ago I would have told him not to bother as I wouldn't have believed he could do it, a heated discussion would have ensued and we would have both ended up cross and out of sorts with nothing else achieved.  Today I thought briefly and decided that the worst that could happen was for the machine to stop working.  As it currently isn't working properly anyway that didn't seem particularly important.  What was more important was for Ash 1. to have something to do 2. to have the opportunity to fix something that wasn't working.  As I've said before I'm not the most patient of people so thought it was best to leave him to it and actually within 15 minutes he'd managed to get the scanner working even if

'Life with dementia' update

Last December, just after a mega three week driving trip to the Florida Keys, Ash told the doctor at the memory clinic that we'd been to Spain for a week.  In February I was away from home when he phoned me to ask me how my day had gone following that up with another phone call half an hour later to ask me how my day had gone.  A couple of weeks after that we went to stay with friends and he kept asking where the bathroom was even though it was across the hall from our bedroom and we had stayed there lots of times before.  Even in May when we went on holiday to Lanzarote I half thought that we would be coming home after three days.  However that holiday was I think the turning point.  He relaxed, regained his sense of humour and started talking again.  It also gave me time to take a step back from 'us' and work out what he needed from me and others around him.  I said yesterday that I have felt we've been slowly climbing out of the abyss and today I think we might have

The benefits of love and compromise

A friend and I were talking last week about whether you always end up with the love of your life and decided that not everyone does and that any relationship needs work to keep it on track.   Until a few years ago I think we had one of the most equal marriages I knew.  We made decisions together, discussed ideas and moved in the same direction (almost) at all times.  We knew what we wanted from life, which was most definitely not to be stuck in a rut and drift into middle age and that was what we worked towards.  If we went away anywhere Ash would always pull a bottle of champagne and two glasses out of the bag as soon as we arrived, he would drag me to see a particularly spectacular sunset, he planned my birthday celebrations and, whenever I achieved some milestone or other, he was always so proud of me.  He was also the one person I knew I and everyone else around us could lean on in a crisis.  We both however had strong personalities so we argued occasionally and those arguments cou

Another step forward and another victory over dementia

Over the last few years I have felt as though I've been losing my best friend piece by piece.  Ash withdrew from conversation, from family life and from our relationship, each day appearing to retreat into himself that little bit more until there seemed no connection between us.  When we were given the diagnosis I knew what had happened;  I already had the shell of the man I once knew and couldn't see any way but down.  I thought that was it and it was until I discovered that there was a way out of the fog.  I talked to people, asked questions, read books and discovered much to be positive about.  I've written before about strategies I was given and how, from the moment they were put in place, life improved and I know we have gradually been climbing out of the abyss but something has just happened that is more exciting than anything that has come before.  Every day Ash takes Max the spaniel for a walk and is away from home for about an hour and a half.  We used to do this t

A new phase

I woke up this morning and realised that we had become friends again.  For a long time it seemed that we were existing side by side.  I was irritated by all the things that Ash wasn't doing and he was I think made permanently anxious by my irritation.  Looking back this isn't something I'm proud of but I'm sure I'm not alone.  I felt that he was becoming old before his time and my one fear was that we would sink into middle age without doing all the things we had looked forward to in the past.   We were going to Western Australia to visit friends, we were going to Vancouver Island and other areas of Canada with those same friends, we were going to travel through France again with the tent and the dog, we were going to fly off to unknown destinations in America, we were going to visit Caribbean islands; so many adventures and so many places still to be discovered.  Then life changed as did our relationship and it got to the point where I dreaded going home and Ash ha

Being able to see the joke is a bonus

There are two strands to this post which do link so please stay with me.  Over the past few months I have discovered that technology and dementia do not mix well.  Ash used to have a mobile phone which was so uncomplicated that all he could do on it was make calls and receive calls, send texts and receive texts, oh and it had a camera on it.  I have one similar but without the camera so you can see that we're not a high-tec couple.  Anyway his phone finally gave up the ghost so I ordered an identical one through a well known internet auction site thinking that would solve the problem.  Unfortunately the 'new' one wouldn't work either nor the next one I bought so I decided to get him the new Nokia 3310 which I thought would be identical to the old one but with the internet which he didn't need to use.  If you too are thinking the same I am here to tell you that there are very few similarities between the old phone and the new and Ash's stress levels went throug

Sometimes staying at home is enough

I am now in the middle of two weeks off work.  Those of you who have been following this blog for a while may remember (but don't worry if you haven't kept up with my holiday plans, they do change on a regular basis) that I was planning on a camping trip to an island off the coast of Wales for these two weeks.  Decided against that as fancied going to Florida in November and can't afford both.  Anyway, for whatever reason, we have spent the first of the two weeks at home and it's been wonderful.  Ash has been completely relaxed, we've had days out with friends, I've had lunch out on some days and left him at home, there has been no stress or anxiety and nothing (except my mother but that's another story) to cause any and I'm left wondering why I felt we needed to get away.  In the past we have always gone away if I've had any time off as it was the only way we could have time with just the two of us (three when Jake was younger).  I did once have a

36 years and counting

Woke up this morning to grey skies, wind and rain.  What a contrast to this day thirty six years ago when, in my memory, the sun was out, the skies were blue and the temperature was the highest it had been all year.  That was the day Ash and I got married and the day was glorious in more ways than one.  We were young (22 and 21 respectively) and so full of plans that nothing seemed impossible.   We had got to this point against all the odds.  We met on a school ski trip when I was 13 and he was 15 and decided we quite liked each other.  I think I stalked him for the next two years and then, finally, he asked me out.  It was another four years before we got engaged and then another two before the wedding so it wasn't as though we rushed into anything but the grown-ups around us still thought we were too young and that it wouldn't last.  I have to say that there's nothing like a bit of adult opposition to make you determined that things will work out!! Anyway thirty six yea

From confusion to taking the initiative in one day.

Today has been very interesting in more ways than one.  Last Wednesday I finished work for two weeks and Ash was instantly chilled.  I'm still not sure why  but am very grateful and we've had a lovely few days, no stress, no anxiety and no traumas.  This morning I left home at 8.30 to collect a friend as we were having a day out together.  Unfortunately the only part of the day we'd really organised was the departure time so I went to collect her at exactly the same time she left home to collect me!  Not only that but my phone went dead as soon as I tried to phone her (and it turned out she'd forgotten her phone so I wouldn't have been able to call her anyway).  I came home to find that she had left our house to return home and wait for me and Ash was in a state of utter confusion.  Actually at that point so were we as you might have guessed but that's a whole other story.  I just hope you're keeping up so far.  Anyway the point of telling you all of this is

Learning to live with life changes

I said yesterday that accepting the situation you're in is the beginning of making your life easier and that really is the truth.  Since all of this began every so often something has happened which has knocked me sideways or I've noticed that our life has changed in a way I didn't expect and that made me worried about the future.  However I've realised that, as long as you accept them, very quickly these changes become the norm and then they are no longer frightening.  Before the diagnosis of dementia life changed without me noticing.  I was worried about Ash but not about 'us', after all it was 'only' anxiety and depression, there was a cure and it wasn't forever.  Not long after the diagnosis, (while I was still in panic mode and before I'd moved towards acceptance) I was away for work.  Ash phoned me at 6pm for a chat and to ask what I'd done during the day.  Half an hour later he phoned me again for a chat and to ask what I'd done

Acceptance is the key

It's not until I read back over my posts on this blog that I realise how up and down my emotions are but here's the thing, as long as I have had a decent night's sleep life itself is generally on an even keel.  Yesterday on the Facebook page I posted a quote which said something like 'Life doesn't end with a dementia diagnosis it just gets more complicated' but I really don't think this is true.  Before the diagnosis life was very complicated.  Ash was acting so out of character that I never knew what each day would bring and didn't know how to deal with any of it.  I still can't pinpoint the moment this all started but I think things began to go awry as far back as 2012.  At the time I put it down to age and thought we were just sinking into midlife boredom, then I noticed him phoning people to have exactly the same conversation he'd had the day before and I would go cold (at this point his mum had just died of Alzheimers) but then dismiss the t

Knowing the skeletons in the cupboard

Today I've been out for lunch with two of my oldest friends.  We've known each other since school (one I met at primary school and the other at secondary school) and meeting up with them is a very liberating experience.  There really is nothing like talking to people who know all the skeletons in your teenage cupboard.  There is no use trying to hide behind the person you would like to be, they will see right through you and won't be impressed.  The other great thing about this friendship is that they were there at the very beginning when Ash and I met and actually remember events from that time that I have long forgotten so there is nothing to explain and little to describe.  This year, I think as a result of realising that life and friendships are very precious, we have met more frequently than ever before and each time I've come away feeling relaxed and ready to face the world again. So that was today.  Last night I went out with friends I've only known for aro

Teetering time pieces

Following a proper night's sleep I feel a different person today and at this present moment, have no need of  Gloria Gaynor singing 'I will survive'.  We've had a lovely day so my mind has turned to the problem of what to do about mornings from January.  My favourite breakfast DJ is moving to another radio station (if you live in the UK you will now be divided into Marmite groups as you'll either love him or hate him) and that is only available on DAB radio.  The clock radio we currently use is the one Ash bought me for my 21st birthday thirty seven years ago and, as you can imagine, the stations we can get are very limited.  I'm reluctant to give it up for obvious reasons but also because he knows how to use it.  If I buy a new clock radio to replace that one he will be thrown into confusion so have thought about buying a DAB radio to perch on top of the old clock radio however we also have a digital clock which tells the day, date and time helping Ash to keep

Can you have too much positivity?

Last night a friend and I had  a discussion over whether I was being just a little too positive and maybe bottling things up slightly too much and that, as conversations often do nowadays, got me thinking.  She was only thinking of me and I realise that focusing on the positive doesn't/wouldn't work for everyone,  I'm also fairly sure that sometimes I'm a little too Pollyanna-ish in my outlook but it really does make me feel better and gets me through what's happening.    There are two songs which I think illustrate exactly what I mean and both were on the radio at the weekend.  The first was 'Without You' by Nilson which, as I've mentioned before, has been our song since the beginning.  This was playing when we were out in the car on Saturday and the words had tears streaming down my face (

Going back in time

I've been thinking today that being married to someone in the early stages of dementia is a little like being the mother of a young child.  I don't mean that I have to do everything for Ash or that he can't be left on his own or even that he's incapable of doing things around the house.  What I do mean is that when you have children, for a very long time your life is no longer your own.  Gone are the days when you can just think about yourself, when you can eat a full meal or just snack through the evening; when you can lie in bed as long as you want; when you can just arrange to meet up with friends without a care in the world; where you can plan a trip away months in advance or, conversely, decide tonight that you are going away for a few days tomorrow; where you can eat leftovers until you really do have to go grocery shopping and, especially, where you can go for hours without thinking of anyone else but you.  If you are now in a position where you care for someone

Lessons of life's ups and downs

I read about people feeling as though they're walking on eggshells when dealing with dementia but that to me assumes that the things you do in advance will make a difference when actually that isn't always true (sometimes it is but not always).  Instead you need to go with the flow and learn from everything.  Yesterday I realised that after 36 years Ash is no longer comfortable eating outside in an evening or even sitting out in the garden afterwards.  This took my breath away for a while as he's always been the one to say that it's too nice to spend time indoors however we still have conversations in the evening albeit centred around answers to questions in the quiz shows he likes to watch so I've decided to enjoy the garden in the day time and join him in front of the television later on.  I wrote a very long piece about this to start with but then I decided you didn't need the detail just the facts.  What I did find interesting was that just by putting it all

A book as a place to retreat to

For the first time since I started this blog I have been struggling to think of something to write and I wondered why.  Then I realised that this morning I started a novel which a friend lent me yesterday.  Now I don't often read novels and rarely in book form.  When I do find one I like it is usually a Jack Reacher or Sue Grafton by which I mean American homicide including gore and violence (pure escapism, I promise I'm not like that in real life) and I read it on my kindle as my eyesight is rubbish and the kindle makes it easier to have large font without admitting I need it.  So today saw me reading a novel in the form of a proper book (with my glasses on so I could see it) and from the first page I was lost in early 20th century South West Australia.  I was on a small island, working a lighthouse and could see it all in my mind's eye.  This so rarely happens that I was amazed, when I put the book down the first time, to discover that an hour had passed without me thinki

Taking friends seriously

Last night a friend phoned out of the blue to see how I was.  I had told her about Ash quite near the beginning and she'd said to get in touch if there was anything she could do and then we hadn't been contact again until yesterday.  This was nothing unusual, we're both busy and we can go months without speaking, but we go back a long way, to when Ash and I got married in fact, and she was one of the first people I met when we moved into the area.  I read a lot on forums where people are ranting because friends and acquaintances make empty gestures, offers of help when they don't mean it and inquiries about how their loved one is when they're not really interested.  I was just touched however that she had not only thought of us but had actually picked up the phone to see how we were (and that thought kept me smiling all evening).   We chatted for over an hour, caught up with family stuff on both sides and then hung up promising to talk soon.  On current experience t