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Showing posts from July, 2020

Sometimes words almost fail me

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Ash likes taking Max the dog for a walk but for a few weeks those walks became more and more frequent until the poor thing was going out four times before lunch and twice in an afternoon.  Not long walks but, as he's now 11, they were long enough and frequent enough to wear him out and, as he is the sole focus of Ash's interest nowadays, I need to prolong his lovely life for as long as possible.  I left the situation as long as I could and watched carefully but in the end I had to step in and talk to Ash about cutting down the walks just because of Max's age.  Surprisingly he grasped the importance of what I was saying instantly but then got very confused and fearful about when he could and couldn't take him out so I bought yet another chalk board which arrived this afternoon.  We unpacked it and admired it before I set to and drew a grid on it putting Monday to Sunday down the side and three columns across the top saying am. am & pm.  We needed 3 columns because M…

Not quite exhausted

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We've just taken the 6 year old home and are settling back into some sort of normality for a week at least.  I'm not quite exhausted from it all but will certainly be in bed early tonight so this is a quick post just because I wanted to tell you about two new achievements that I'm very proud of.  The first is the lawn.  You may remember that I was in despair because Ash's huge mower dragged me into the flower bed the minute I let the clutch out so I kept persuading him to cut the grass but, whereas once upon a time that would have resulted in neat edges and perfect stripes, now it results in something close to zig zags with tufts of grass left between those wavy parts.  So I put up with the zig zags until I could get mum's lightweight lawn mower over here and have now been using that for the last four weeks, including yesterday, with the result that we have a very neat lawn which i admire on a regular basis and all without the weekly trip into the flower bed.

So th…

Life not quite as we know it

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The 6 year old's still with us so life's a bit full on, lovely of course but this visit isn't quite like previous visits as far as Ash is concerned.  It's not that he doesn't like having the little one here, it's not that he's not interested in what's happening, it's just that there's less enthusiasm to join in with it all.  In the past, even after dementia began its invasion, there was always something for Ash to instruct on, somewhere for him show the way and something for him to create following a specific request.  This time there's been more focus on the dog and less on the 6 year old which feels just a little odd.  We're left to our own devices more and this afternoon in particular, when invited to come on a stick hunt, he said he thought he'd stay at home.  Luckily some rituals, like bath time which he's always been in charge of and an evening meal with the three of us around the dinner table, stay the same at least for no…

The 6 year old brings a new perspective

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Today began with the 6 year old trying to sneak a tv program past me and thinking I wouldn't notice it was the same one we'd had a discussion about last night.  That discussion ended with, I thought, the two of us agreeing that there were better things to watch but he obviously expected that a night's sleep would have helped me forget.  His lessons for today were that a) I'm brighter than I look and b) I'm not the pushover he thought I was.  However we've also had a lesson from him and the lesson was that the weather doesn't have to be perfect for a trip to the beach to be fantastic fun.  I'd hoped for sunshine but what we got was driving rain and wind strong enough to blow us across the sand so not quite dream conditions but he ran up and down sand dunes, dug holes and, most wonderfully, stood at the water's edge shrieking with laughter as waves broke over his wellies.  Even the big wave which crashed, filling his boots with water, didn't move …

Weekend away

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My weekend away may have got off to a difficult start but you'll be pleased to know that I had a lovely time doing not much at all and Jake reported that Ash was perfectly happy the whole time I was away.  Last time I had complaints when I got home, this time it happened before I went so I think it's safe to assume that it's part of the deal; I get time away but need to appreciate that it will cause stress at some point.  I also think that it's easier on everyone if that stress comes at the beginning because it's then out of the way leaving him free to relax and enjoy the 'boys' weekend.  So now we have three and a half days with the six year old and Ash is in seventh heaven because he has someone who doesn't remember the old him and who has such faith in him that it's wonderful to watch.  The six year old thinks Grumps is able to do anything that's asked of him and so, of course, it frequently becomes a self fulfilling prophesy.  I say 'fre…

A slightly difficult start

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You may have noticed by now that I lean towards the upbeat, that I try my hardest not to notice the negative and that I rarely acknowledge the difficulties but this weekend didn't have a great start and I thought you might like to know what happened and how it was all resolved.  Jake and the 6 year old came over last night, the details of arrivals and departures were written both on the weekly planning board and in the diary, Ash was happy with our visitors and everything looked set to go swimmingly.  Even this morning when we woke up things were still fine; Ash was chatty, everything was going to plan and I felt safe to pack.  I'd planned to leave the house at 8am so felt pretty pleased with myself when at 8.10 I found myself heading for the sitting room to say goodbye but that's exactly when the best laid plans began to crumble.  Ash demanded to know where I was going and how long I was going to be away.  I gave him answers which I thought would be the ones he was lookin…

A change in priorities

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For years and years Ash and I have holidayed a lot.  At least twice a year we went abroad and then another week would be spent in the UK with the latter mostly somewhere remote where we could escape from the outside world.  It might be camping with no access to mobile phones or laptops; it might be the cottage in Scotland which required a drive in the truck across two fields before tackling a track down a cliff face to arrive at a cottage on it's own beach where we wouldn't see another soul for the whole week; it might be the island only accessible across a Roman causeway at low tide;  it might be the wood cabin on the side of a loch where all you could hear was the bird song;  all of these were places we went, sometimes more than once, where we could sit and talk or walk in silence with no thoughts of real life to intrude on the peace and quiet.  We both worked hard and my job in particular was very stressful and all consuming so to get away was really important to us but eve…

Minor adjustments needed for a weekend away

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Jake and the 6 year old are coming on Friday and staying the weekend so I can have a couple of days away on my own.  This will be wonderful and something we did as soon as the easing of lockdown restrictions allowed.  That time I sat in Jake's house for the two days relishing the peace, quiet and total lack of responsibility so I know what I have to look forward to and I can't wait.  Last time there were a few wrinkles in our planning though.  Ash had written in his diary that they were coming for the weekend but he hadn't added that I would be at Jake's.  He did however talk about the whole thing to me so I, foolishly, thought that he'd taken it all on board and didn't think to check the reality.  Jake and the (not so) little one arrived on Saturday morning and I left around an hour later assuming that everything was under control but it appears not and that day Ash lived up to his name of 'Grumps' in every possible way.  Sunday he was much better but …

Form filling

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I told you a few weeks ago that I'd decided to apply for PIP (Personal Independence Payment) on Ash's behalf and several people got in touch either to say 'good for you' or 'if you need any help let me know' or 'good luck' and that last one was the one which I knew I'd really need as this particular benefit is notoriously difficult to get.  People in my life had been saying for a while that I should apply because that one benefit opens the doors to so many others but I knew I wasn't strong enough to fight if it all went horribly wrong so I left it and we struggled and managed but I've been feeling so much better recently that I decided to go for it.  And what a good job I waited.  For one thing the form is 40 pages long and for another it has to be hand written which, considering we're 20 years into the 21st Century, has confused me a little and the only explanation I can come up with is that those in charge want to make this as difficul…

The positivity of a blue coat.

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I'm feeling pretty good about life in general and myself in particular right now.  Just so you know, I'm one step nearer the bright red sports car which has helped in the life stakes and today I tried on my favourite coat (bright blue, not my usual black) only to find it's far too big and that I can in fact almost wrap it around myself twice.  This is practically in the miracle class because when I bought it there was no spare material and the only reason I got that particular size was because I was too vain to get the next size up.  Today I put it on, looked in the mirror and realised I was either going to have to have it taken in or invest in a new one.  So just those two things have lifted me further than I would have thought possible and made me think about a conversation I had with a friend recently  over whether I've given up my life for Ash and his dementia. Some might look at us and think I have; my life has certainly got narrower, days out are a thing of the p…

Sometimes you just can't fix it

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This morning we didn't have a good start to the day.  It was one of those mornings where Ash woke up and then lay rigid in bed not seeming to know what to do with himself.  As usual I went downstairs to make the tea and, as usual, when I got back upstairs he'd opened the curtains.  Unusually however he was laid completely still and on his side right on the edge of the bed with his eyes open.  I put the tea down at the side of him but with no acknowledgement from him and still no movement either.  This was a little concerning and once upon a time I would have worried about it, questioned what was going on and been fearful for the rest of the day.  Nowadays however I have become a little more selfish and I realised I wasn't quite awake enough to deal with the problem, whatever it may be, so climbed back into bed to think of book writing, podcast recording and my future.  When I'd finished with all that I offered to make another cup of tea but Ash announced that he was ge…

Life continues to improve

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Yesterday afternoon I spent an hour talking to the lovely Pete Hill from TDW Radio which is part of Health Radio UK.  Pete broadcasts a podcast called 'The D Word' every Wednesday and this was a sort of interview for that podcast.  I say 'a sort of' interview because it seemed much more like a chat and he was so easy to talk to.  Those of you who know me may by now be wondering how relaxed I was and what I actually said because, as you know, I have a tendency sometimes to speak without thinking but for that you'll have to wait a little while longer.  Pete's going to let me know when it's going out and I'll pass the information on to you then, if you don't know me but you've wondered what I sound like, you'll be able to listen in and find out.
One of the things the chat highlighted though was how far I've come since December 2017 and particularly in the past few months.  Pete's PA, Angela, emailed me back in May asking if I was inter…

One small comment changes our world yet again.

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You'll know, if you've been following this blog for even a short time, that Ash used to be the DIY king.  No job was too small for him to do or too big for him to attempt but now he eyes up issues nervously and turns his back on them wherever possible.  Mostly that's not a problem; firstly, in his place there's me as I find more and more jobs I'm willing to tackle, then there's Jake who assured me at the weekend that he can replace the felt on the summer house roof and fix the dripping overflow in the loft (as long as I tell him what to look for) and then there are friends and neighbours who will help if I ask them, so all is not lost it's just that life looks so different from the way it used to.  At the weekend a friend in the village gave us a wooden cable drum which I really wanted as a table for the patio.  Jake fetched it for us, Ash and I went excitedly outside to watch as it was carried through the garden and then Ash went to fetch the can of black …

Dawn French

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What does Dawn French have to do with dementia I hear you ask and the answer is 'nothing' so you really don't need to panic but I have just read an interesting interview with her that really made me think.  As usual it made me think about myself because I'm discovering how self centred I really am but in this dementia affected life I'm also realising that a little self absorption is no bad thing. 

As we now know dementia doesn't just arrive in our lives on the day the diagnosis is delivered.  As Penny Garner from Contented Dementia will tell you, when a person is first diagnosed the disease has been eating away at the brain for at least five years and those years will have been traumatic not just for the person living with it but also for those of us living alongside it.  I know that if you're the one who's been given the diagnosis then it's a devastating thing to happen to you but it seems to me that those of us who share your life suffer in a way…

Cleaning (aargh) but good things as well!

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Quick post today as I've spent the day being a grown up with grocery shopping and cleaning on the agenda.  I hate cleaning with a passion and never realised how lucky I was that Ash was happy to do it all but there you go, we never appreciate what we have until it's gone.  Anyway it needed doing but my biggest incentive is that the 6 year old is coming this weekend and he has a tendency to give it to me straight if he thinks I've been slacking and is very likely to walk in, look around and then give me a verdict I'd rather not hear so I've had to knuckle down and get on with it.  However I also have something I want to share and it's that, first thing this morning, and in the rain, I ran my second 28 minute run of the week.  Not only that but the app wasn't working and the lady who talks into my ear telling me when to run and when to walk and how much longer I have to go until I've finished had gone on strike.  The stop watch was still working so I knew…

Music for the soul

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For some reason I keep waking up in the early hours at the moment and when I do I can't get back to sleep so have taken to putting my head phones on and drifting off to the the sound of music.  This has been so successful that I now have a 'middle of the night' playlist full of my favourite, soothing tunes.  I also, as you know, have a running playlist full of my guilty secret 70s tunes so that Marc Bolan, Suzi Quatro, Bay City Rollers et al get me on my way and keep me there for the whole circuit so playlists I think are the way forward now.  This morning I woke at 4 am so fetched my phone through, hooked up and lay listening to my current songs while at the same time thinking about how my musical choices have changed over the past two and a half years.  At the very beginning of all this, when I was completely distraught, I remember 'our' song coming on the radio when we were on our way to do the shopping.  'Our' song was 'Without you' by Nillson h…

To DIY or not to DIY

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When Ash and I bought our first house we started decorating, each doing our bit to change the colour from brown and orange to something more in tune with the 1980s.  I've no idea what colour we actually went for in the end, and have a feeling that it may even have been brown and cream, but at least the orange was nowhere to be seen.  So Ash wallpapered and I painted and all was amicable until I stood, screwdriver in hand, ready to put the handles back on the doors, at which point he came over to give me advice on how to do just that.  How to take a door handle that had already been on the door, hold it in place and insert the screws into the existing holes.  I handed him the screwdriver, walked away and it was the last bit of DIY I did until dementia entered our lives thirty four years later.  He's always been able to do anything I asked you see so there was no need for me to even consider my part in it all.  Need a new bathroom suite fitting?  Ash could do it.  Need the kitch…

Life before dementia v life now

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You may have noticed that my posts over the past couple of weeks have been focusing on my future and you may be interested to know that those posts have provoked the biggest response to anything I've written since I began this blog in 2018.  Those responses have been overwhelmingly positive and almost every one has come with an encouragement to keep telling it like it is for the vast majority of dementia survivors who feel as though life has become about treading water and keeping it together.  I did wonder however whether there might be some out there who are a little uneasy that I've gone too far, who think I might be better to live in the moment and enjoy what's happening in my life right now and so I thought I might paint you two pictures showing what life used to be like versus what it's like now and in this way, if you doubt me and my motives, you might just understand a little better.

Throughout our life together Ash could and did make me laugh every day from th…

Relationships

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Out this morning with a friend for a walk in the glorious Lincolnshire Wolds.  We do this every week, walk for about an hour and a half and always cover a wide range of subjects as we cover the miles.  Today we talked teenage daughters, siblings, dogs, friendships and relationships including my now discarded plan for a toy boy under the stairs.  This particular friend never makes suggestions for my life, never approves or disapproves but usually just looks at me and laughs when I come up with some outrageous idea and then listens while I outline my thoughts before laughing some more.  She did all of this with the toy boy idea but then we got onto relationships in general, which was far more wide reaching, and whether it was possible to be in one while still remaining fully independent.  This was of course linked to my post of a few days ago only our discussion wasn't particularly dementia related but instead covered all new relationships.  I do know I've been lucky to have Ash…

Still feeling good

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So I wondered if you've been wondering how I'm getting on.  Being an only child I have a tendency towards egocentrism and assume that everyone is as interested in me as I am but maybe you're not as, after all, why should you be.  Be that as it may however I did think you might want to know how my running is going.  I promised you a weekly update but haven't given any details for the past two weeks so, if you know me as well as I think you might, you'd be forgiven for thinking that's because I've given up.  After all, if I was still running, this would be the end of week seven in a nine week program and in the past I've failed to get past run two of week six.  If this really has been your train of thought I'm delighted to be able to tell you that this morning I ran the final run of week seven and am ready now for week eight to begin so how good is that?  When I first started running back in January 2019 I ran for one minute and thought I was going to…

Why plan for a dementia free future?

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Yesterday's post brought responses in it's wake, mostly positive but some noticing that I seem to be planning for a future without Ash and with a question mark next to that.  No awful comments, no difficult statements, just a raised eyebrow here and there.  Some of those are outsiders looking in and this is where I think it's important to make it completely clear that, although I am doing just that, I don't have a date in mind, I'm not waiting with baited breath for this to end, I just like to know I have a future waiting for me and that knowledge and those plans are what keep me sane and on track.  Being with a husband/wife/life partner who is living with dementia is a lonely place.  I have amazing friends who keep me occupied, make me laugh and listen when (occasionally) my barriers come down but they're not Ash and he won't ever be there again to listen to me, to offer support or to give me a shoulder to lean against so I have to think for myself, plan f…

What does your future look like?

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Over the last few weeks we've decided haven't we that, for some of us, planning for the future is ok; that there's no need to feel guilty about the planning because our loved one has already left us and, for our own sanity, we need to know we have a future to look forward to but I wondered if you've thought past the immediate aftermath and where to go long term.  I don't know about you but, even with forty plus years of our relationship to lean on, I find this to be the hardest thing I've ever done and I really can't imagine being able to commit to someone to this extent with only a few years of history behind us.  So what would you do if, in a few years time, you found yourself in another relationship only to find dementia lurking once again?  That, I have to say, would be my greatest fear because, with the best will in the world, I really couldn't do this for a second time.  I have thought about this of course (look away now if you're easily shock…