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Showing posts from June, 2021

Exciting times ahead

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 You'll be pleased to know that I'm over yesterday's little blip and back on track partly due, I think, to the fact that the next step of the carer plan means I have a night off tomorrow.  The lovely L is coming at lunch time and I'm going to spend the afternoon with my mum followed by the evening and night with Jake and the seven year old then a whole day to myself on Thursday, coming home for 5pm. Keep your fingers crossed for me because if this works it opens up a whole new world of possibilities.  If it doesn't then of course I'll have to have a rethink because, however much I need my life to open up a little, I won't do anything which distresses Ash.   This has been in the planning for ages, even before my week away, but it was only this morning when I realised how excited I am and that showed me something else too.  When you share your life with dementia, however much you love, care for, and are committed to the person with the diagnosis your life shri

What a roller coaster this is

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 A roller coaster of emotions that is.  I spent the weekend irritated and am slightly ashamed of that because the irritation was caused by Ash not knowing what to do with himself and that's not his fault.   Before my week away, when Ash was almost permanently cross with me, he would sit grumpily in front of the tv and only move when he absolutely had to.  Now he wants to do things but he wants to do things with me and he needs me to come up with the ideas which is a little exhausting.   Before my week away, on the odd occasion that he wanted to get out of the house, he would ask what we were doing and would be happy with a suggestion for later in the day.  Now he asks but, as soon as I come up with something, his coat goes on and he's waiting at the door.  There will be a strategy for dealing with this of course but right now I haven't quite got a handle on it hence the irritation. Of course I've thought about this and realised that my irritation isn't helping eithe

It's all starting to make sense

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If you've been following this blog for a while you'll know that Ash used to do everything.  He'd cook, clean, garden, walk the dog, mow the grass, do the washing and on and on.  I've said this lots and lots of times and it's true, except that I realised today it's not the whole story.  I've thought about this on and off quite a lot as Ash's skills have gradually disappeared and I've had to take over all those things he used to do and I've sometimes been ashamed at how much he did because it seemed that I didn't have much input into our lives at all.   Today I thought harder and noticed, in amongst all the memories, that the moment Ash began to take on more of the responsibilities in our lives was when my work life became difficult.  There was a time when I would leave the house at 7am and not get home until 8 or 9pm while also working at weekends.  Not great, very stressful and, at the time, unavoidable.  Those hours meant I was never here so

Today was a good day

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 I have to be honest here and say that at the moment most days are good ones but today has been my first really stress free day since I got back from my week away.  The carer confusion last week meant that this has been my first day out with no worries whatsoever.  Ash was at home with the lovely L while I met up with a friend for coffee, a walk, picnic lunch, the rest of the walk then a cup of tea and home.  I really can't tell you often enough how brilliant my friends are.  I don't report on every day out, coffee, phone conversation, video call, email or walk because there really are so many but I think I'm on very safe ground when I tell you I couldn't do this without them.  Those amazing people check up on me, tell me when I'm doing well, support me when I'm struggling, remind me that there is a life beyond dementia and they are completely indispensable to my life. Do you remember that when L first started coming I couldn't tell Ash until about 10 minute

Let there be light

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 You may have noticed a lack of posts over the last few days and, if past experience is anything to go by, you'll have been wondering if there's been a problem.  The answer to that is 'possibly' only some of you won't consider it a problem and will just be pleased for me.  My difficulty is that, following my week away, Ash has decided that he wants to be with me all the time.  Not in a clingy way you understand but in a companionable way which makes my feelings even more complicated.  He invites me on walks, he sits with me at lunch time or when I'm having a coffee and he wants to talk to me about all sorts of things.  That should be perfectly lovely and mostly it is but sometimes, just sometimes, I'd like time to myself without feeling guilty and if I had that time I could write the blog but I don't and so I can't.  This post comes courtesy of Ash falling asleep in front of the television tonight but that doesn't always happen so, for a while, f

A lovely day but ...........

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 A very lovely day today.  This morning saw us out to the garden centre where we didn't find what we were looking for but we did have a coffee, saw some sights and Ash made me laugh out loud several times.  This afternoon he asked me to go with him on his dog walk then, when we were out, talked to me and held my hand and I realised that in the three and a half years since his diagnosis that's the first time he's done those things and certainly not all three at the same time. A complete change of attitude for him then and a lightening of life all round so why the 'but' I hear you say.  The 'but' is of course because it's too late and it's not enough.  Dementia takes away so much and we go along with it; we make the most of what we have and, usually, our lives diminish so slowly that we don't even notice.  There's no one big moment when everything changes, just small steps to a life very far away from the one we envisioned and because those ste

Carer confusion has benefits

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 Yesterday we had some carer confusion when the lovely L didn't arrive.  I was due in Lincoln at 11.30 so had to leave Ash on his own in the hope that she'd arrive soon after I drove out of the village but it wasn't to be.  I stopped halfway and found a missed call from him, phoned him back and talked through his confusion then phoned the agency who promised to find out what had happened and let me know.  Arrived in Lincoln to find a message saying that there'd been a family emergency and L was unavailable but that someone else was on their way so phoned Ash to relay that message and found him still a little confused but seemingly happy for a brand new person to be arriving at the door at any moment. I debated phoning the agency again with instructions on what he liked/didn't like, what he did when L was with him, where everything was and all the other things I thought they should know but then pulled myself up.  These people are professionals, it's what they

The different faces of Ash

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 For the past three and a half years Ash hasn't really noticed my existence except for the times when it affected his well-being but, since my week away, that has all changed beyond recognition. Now he compliments me on what I'm wearing, he chats to me, he jokes with me and he gardens alongside me.  Yesterday we went to town to return something and I suggested coffee afterwards.  Normally he'd dismiss that idea and say he'd prefer to go straight home but instead he asked where I was thinking of going, found a table when we got there and then sat with me and commented on the world outside the window.  No angst, not even when the table we usually sit at had only one chair.  He was a little confused by that but I noticed and stepped in to find another so everything was fine. This morning I escaped to do the grocery shopping and when I got back he was in the middle of trimming the edges of the lawn, something he gave up on a very long time ago.  We had coffee on the patio l

A new way of life

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 What do you do when dementia enters your life and the person you've loved for more than forty years changes, seemingly overnight, from a chilled, loving, supportive and happy individual into a nasty, irritable, truly horrible stranger?   I obviously can't speak for everyone but if you're like me you draw on reserves of patience you didn't know existed, sometimes you shout back, lots of the time you cry (mostly in private) and, eventually, you switch off emotionally and get on with life, dreaming of the day your nightmare comes to an end and you can become yourself again. Then one day you decide you can't stand it any longer and you need to get away, even for a short while.  You have friends and family to help so you plan and plan and you manage to escape, hoping against hope that nothing awful will happen while you're gone and that when you get back you'll feel strong enough to pick up the reins and carry on. You manage to pull off the escape and a whole se

Lessons from a carer's break

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I had such a lovely time last week and we've both benefited from it more than I would have thought possible but I've come to realise that, for me, it was more than just the break from responsibilities.  Stepping back gave me time to catch my breath, it allowed me to focus on myself for the first time in years and years and it gave me a self assurance that was quite unexpected. I remembered how much I liked driving, I discovered how liberating it is to stay in a hotel on my own, I found I was happy to eat in a restaurant with only a book for company, I learned that I can negotiate motorway services without help, I noticed that I was much less tired driving on busy motorways than on the quieter roads near home and, finally, I found that I can drive for far longer than I would ever have thought possible which in turn opens up the world to me. At the beginning of all of this I was so frightened of living my life without Ash to look after me and make sure I was ok.  Over the last th

Good times

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The good mood which greeted me last Saturday continues with lots of hugs from Ash and the announcement yesterday of 'I'm lucky to have you to look after me' taking me completely by surprise.   It really seems as though he's worked his way through his tunnel of despair and is now, after three and a half years, finally acknowledging what's happening to him.  With that acknowledgement seems to have come an acceptance that life hasn't come to an end and there are still many aspects of it to be enjoyed and that has made such a difference to both of us.   In fact at this moment I'd say it feels as though we're back to where we were a couple of years before the diagnosis and certainly before that dreadful day when our world came crashing down around our ears.   As I said in my last post I don't expect this level of understanding to last, not because I'm being negative but just because I'm being realistic.  The brain atrophy won't come to a halt

A double edged sword

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The positive benefits of my week away can still be seen.  Smiles are all around, jokes are still being made and offers of help are everywhere.  Even a visit from our social worker failed to dent Ash's mood and he was chatty, welcoming and good humoured all the way through.  We hadn't met her before and I was a little anxious that all Jake's good work last week might be undone but she was lovely and I had no need to worry. I went for my final tanning session before giving myself up to the new sun loungers in the garden for the rest of the summer and left with Ash's teasing in my ears then spent the afternoon gardening side by side with him as he weeded, trimmed and tidied almost like the old days. In fact life at the moment bears such a close resemblance to the old days that I really should be very happy but .........   I've got used to being on my own, to living in a silent house, to being taken no notice of whatsoever and this is taking some getting used to.  Life

We did it!

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 A whole week away, a week which took a huge amount of planning and one which, if I'm honest, was a gamble for all of us but it worked and it worked better than I could possibly have hoped.   Overnight stays there and back helped the long drive which I'd been dreading, holiday crowds were mostly avoided through walks and sunbathing, books were devoured for the first time in months and I've come home feeling just a little light headed as a result of seven responsibility free days. Jake checked in every couple of days to let me now how things were going and, other than a couple of minor incidents, they seem to have managed very well without me proving what I suspected all along, no-one is indispensable.  I slept well, I ate out, I walked, I picnicked  on hills overlooking bright blue bays and I relaxed more than I would ever have thought possible. And then I came home to the biggest and tightest hug from Ash plus an admission that he'd missed me which was far more than I