Posts

Fantasies

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 I have some fantasies I'd like to share with you.  Not exciting fantasies and certainly not the sort of fantasies I'd like to be having but some of you might recognise them. Fantasy #1 :  sleeping all night without having to get up to make tea or just persuade someone that it's not time to get up. Fantasy #2 :  eating a meal when and where I want. Fantasy #3 : sitting at my computer taking as long as I want to write a decent blog post, to reply to emails and/or randomly searching for things I don't need. Fantasy #4 : having the house to myself so that I can sit in silence, listen to podcasts, read a book, have the radio on a station other then Heart 70s or 80s, garden and, surprisingly, clean without being hassled to go out somewhere. Fantasy #5 : accepting invitations without my brain going into overdrive as I instantly begin to plan carers and whether, if I can organise care, it's easier to stay out overnight or come home late. Fantasy #6 : attending village even

The search goes on

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  When Ash was first diagnosed one piece of advice I was given was to start looking at care homes immediately because then I wouldn’t have to rush into anything in a crisis.  I couldn’t bring myself to do it and have waited until it all looks a closer reality.   I’ve been thinking today that maybe it’s yet another area where young onset dementia is different to old age dementia.  Five years ago Ash was still relatively young, full of energy and most of his interests and hobbies were the same as they'd always been.  That being so the home I would have chosen for him then would have been very different to what I’m looking for now.  Over the last 5 years he’s become old before my eyes and has changed so much that there really is little of the old him left.   So, what am I looking for? ‘Something which I fear doesn’t exist’ is the answer to that. Somewhere old and slightly scruffy. Somewhere with a small footprint – he’s confused enough already without having to find his way

Friends, friends, friends

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Ash has gone to bed early again so I thought I'd let you know about my lovely week, every bit of it down  to some of my amazing friends. On Tuesday a friend came to stay with Ash for a couple of hours while I went to view another care home.  You'll remember the previous disasters and are possibly expecting more of the same.  I certainly was but it appears that not all care homes are dreadful.  In fact some of them are very nice indeed and this was one of them.  I turned up with only 30 minutes notice and was welcomed with open arms, the place didn't smell and the staff have all been there for ever which, in the world of adult care, is rare indeed.  Of course they don't have any rooms available at the moment but I was told to phone every month and if one does come available then I can decide whether we're at that stage or not. So, on with the week.  Wednesday morning saw a crowd here for coffee, croissant, cheese scones and lots of chat; Thursday saw two more friends

Not a celebration

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For our honeymoon we travelled to the South of France, on a coach, to a campsite where the tent was ready and waiting for us.  For our Silver wedding anniversary we flew to Nice, hired a soft top sports car, drove to that honeymoon town and stayed in a hotel.  Four weeks after that we flew with friends to Venice for a long weekend. For our 30th wedding anniversary we hired a cottage on a beach on the west coast of Scotland.  To get to it we had to drive across two fields and down a cliff face in the Land Rover and once there we didn't see another soul all week. Yesterday was so different and I found it very, very hard to deal with.  In fact I cried the sort of tears I haven't cried in months, if not years.  I cried all morning, only pulling myself together when we set off to meet friends for lunch.   Lunch didn't go as planned for a variety of reasons, the main one being that fish and chips were nowhere to be seen on the menu.  If I tell you it was downhill from then on I t

Something to be celebrated?

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 It's our Ruby wedding anniversary today and I have to tell you that it's not what I would have envisaged if I'd ever spent time thinking about it over the past forty years. Ash, with S's help, has bought me a card and a plant but that was on Thursday so, of course, he has no memory of it now.  I on the other hand haven't bought anything.  I know it's our anniversary and I know that people will be thinking that those forty years are an achievement but, to be honest, all I feel is that I'm only just  hanging in there by my fingertips. Our thirtieth anniversary was so different, so full of fun and laughter with no inkling of what was to come but now I'm married to a stranger.  Ash is not my husband of forty years except on paper and that makes me sad. This morning I found something I wrote in 2019 which, if you're struggling to understand my feelings, just might help make sense of it all.  It wasn't written as a blog post and is quite long so pleas

Care home adventure

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 I started yesterday with a plan to go and look at one care home.  I'd chosen carefully and it was in the right area, seemed to have everything that Ash would need and the deputy, when I spoke to her on the phone, was lovely.  I was all set and confident. The plan lasted right until around 9am when Jake messaged me to say he'd forgotten to leave his gate open and I wouldn't be able to get into his house.  As I'd planned to spend a couple of hours either side of my visit in perfect solitude I realised instantly I had to rethink so I factored in another couple of care homes in the area and off I set. The first home, the one I'd chosen so carefully, was a non starter from the minute I walked in and inhaled.  I was asked to wait for a few minutes until the manager was free and I spent that time wondering whether it would be rude to just leave.  In the end I decided to stay, look and learn and the experience was very useful in showing me exactly what I didn't want. 

The life and times of a carer

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Before I start this I'd just like to say that someone emailed me a little while ago and at the time my head was so full of 'stuff' that I failed to reply.  There was actually more than the one of those but this particular one was from someone who lives in Lincolnshire and has a friend in a similar situation who lives quite locally.  I went to look for the email today and it's disappeared from my inbox and is nowhere to be seen so if you recognise yourself here please, please could you get in touch again and I promise that this time I'll reply. And now on with today's post............ I never thought I would call myself a carer.  Not in the beginning, not even three years after diagnosis, but here I am four and a half years in and that's definitely my current role. It's very odd living with someone who used to be your absolute equal and suddenly finding yourself talking to them in just the same way you used to talk to children (only, and Jake will confirm