Memory for two

 I thought it might worth having a think about our feelings when it comes to considering that huge next step. For me the most daunting thing of all was how I was going to feel about it all.  The last few years have been so awful I didn't thing I could cope with any more overwhelming emotion so if I could keep us on track with the way things were then that might be the best option. People told me that it would be the worst day of my life, that I would cry and cry and that there would be feelings of guilt beyond what I could possibly imagine.  Never mind how awful it was going to be for Ash to think he was no longer wanted, how on earth was I going to survive all of that? What I hadn't taken into account is that we're all different and, mainly because every case of dementia is different to the next, our feelings and experiences are different too.  I also wonder whether some of us don't like to admit that we're not devastated when it happens and that life is suddenly s...

 I had so many lovely messages after yesterday's post that I'm determined to get back to where I was with daily posts.  Who knows whether I'll manage it or not but for the moment my brain is working and I still have stuff to share so let's just go with that for now. Two of the comments that came up again and again from those emails were to the effect 'we're nearly at that point so this is useful' and 'we're not there yet but I want to be prepared' so I thought I might share with you how we got to this point, how quickly we arrived and what prompted that momentous decision. I say momentous because it really is.  It's an admission that you can't cope any longer, that you're not the best person for the job and that right now you're life is about to change beyond recognition. So the first question I think is 'how do you know this is the right time?'.  In my naivety I'd drawn red lines; 'if this happens I'll know...

 Second visit today and I'd say it was even better than last week's.   There are lots of things about the home that I love; it's always calm and peaceful, the staff seem to know Ash well already, he's relaxed when I leave him; all good things but one thing I hadn't realised was how perfect its position is.  It's within easy walking distance of town which is great while it's cold and it's also right on the edge of the local country park which will be perfect for a walk when the weather gets warmer. This time we walked into town, had a cup of tea and something to eat then a wander around the shops.  Ash had commented on the way in on the fact that his head was cold so we found a hat in one of the shops then went back the way we'd come, once again commenting on all the big houses we passed. So today's visit was lovely and at the end of it I remembered my lesson from last week, handing him over to the carer before leaving immediately.  Best of all, I...

 We had confirmation a couple of days ago that Ash can stay in the care home which suits him so well and I finally feel I can relax and start to reclaim my life. It will be a very different life in just about all respects but current evidence suggests it's going to be ok and, even, better than ok. I went to see Ash for the first time a week ago (2nd visit planned for tomorrow) and it was lovely.  He wasn't anxious, I wasn't irritated and, best of all, he remembered me and gave me the biggest hug I've had in a very long time. Friends have asked whether he wanted to come home or whether he enquired about Max and the answer to both of those questions has been 'no'.  He didn't ask about anything or anyone and was just happy to live in the moment.   We walked into town and went for a cup of tea and a scone, took a long route back and commented on the huge houses we passed before I made my first mistake.  What I should have done was put him into the hands of one ...

  Did you think I’d disappeared? That I was lost, never to return?   If you did you weren’t on your own. Dementia takes away so much but most people assume that what is lost is huge parts of the person living with dementia.   Few people realise that it takes the carer too and those of us who take on that role sometimes fear we’re lost forever. On Wednesday 26 th October we moved Ash into a care home and a whole section of our lives moved in with him.   There was a plan (of course there was) and we knew it was coming; the home was the only one of my search that I kept coming back to in my mind.   I could picture him there and, in the lead up to the big day, I couldn’t have asked for anywhere better.   Could I take in his armchair?   Of course I could.   Could I put it in the lounge amongst all the matching, wipeable ones?   No problem.   Could I move in a more comfortable bed?   Absolutely.   And, most importantly, could ...

  It's been a difficult couple of weeks including settling on a care home and everything that entails. The difficult couple of weeks culminated in three nights of very little sleep, no daytime naps and a husband who can't find his way around the house he's lived in for almost 37 years. For only the second time ever I think, I have sobbed on the shoulder of a friend and really, really not known which way to turn. Now going away for a few days to recover leaving a competent team in charge and helped by friends who've insisted I'm too tired to drive to the station. Normally I would have trotted out the usual line of 'I'm ok thanks, I'll manage' but this time I just said 'yes please' to the offer of the two hour lift which might tell you where I am in all of this. Hopefully four days of rest and relaxation will set me up for what's to come. Don't forget you can share specific posts with others by clicking on the 3 dots at the top right...

 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...

  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 w...

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 tw...

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 wa...

 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...

 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 wa...

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...

Lovely trip out today with the nearly 9 year old and other friends. Getting stuck for a little while, suspended below a track (otherwise known as The Sky Ride) was, apparently, an adventure rather than an ordeal so that was ok; leaping across giant straw bales and balancing on planks was great exercise and the indoor soft play area was exhausting for adults and children alike but for very different reasons. Do you now have an almost full picture of our escapades in your head? I do hope so. Came home to find that Ash had had a good day with S but exhaustion led to confusion later which in turn led to a walk at dusk in an effort to calm things down. It worked to a point but he was in the bath by 8.45 and in bed by 9. The upside to all that has been a large chunk of the evening to myself and a blog post written so it can all, quite possibly, be classed as a win in some form or another. Don't forget you can share specific posts with others by clicking on the 3 dots at the top rig...

Ash has gone to bed early so I have some breathing space and some head space all at the same time which is unusual to say the least at the moment. Anyway, here I am with the latest news and views from our dementia affected world. We're told again and again by professionals to focus on what's still possible rather than what's disappeared but I'm finding that increasingly difficult to do mostly because so much has gone and very little of my Ash is left. Until three weeks ago Ash was still getting his own breakfast and lunch, albeit slowly.  A week later I was putting everything out on the worktop and he was putting it all together.  Last week he stood and looked at everything with panic in his eyes and I realised I needed to sit him down and present him with those meals.  He'd long since stopped being able to contribute towards an evening meal but this was another step down. He can no longer make a cup of tea but he can butter a scone if it's put out on a plate an...

 Am so sorry I haven't been around and am very, very grateful for all the emails and messages you sent asking where I was. I did read them all but, as you'll have noticed if you were an enquirer, I didn't manage to reply and there were a couple of reasons for that. The first is that life got a little difficult for a while and I found myself overwhelmed by everything to the point where my brain refused to function.  I found myself incapable of putting thoughts into words and the only way I got through each day was to put one foot in front of the other and focus on a point just in front of me.  For the first time ever I followed all the advice ever given to carers of those with dementia and lived in the moment.   I have to tell you now, having come through it, that 'living in the moment' is really not me.  In fact it seemed that not focusing on the future meant I had little to look forward to and all the joy and fun drained away from my life.  Planning f...

 Do you remember the missing lid from the tin of adhesive ?  Well it's come to light.  I was going to say I found it but that really wouldn't be true.  I'd looked and looked in the main shed and it was nowhere to be seen but then, several days later, there it was on the work bench in full view.  No explanation, no idea where it had been and obviously no use at all asking Ash but there it was and now it's back in it's rightful place on top of the tin and looking for all the world as though it's never been anywhere else. So you'd think all would be right with my world but now there's another unexplained absence and this time it's a tale of the missing fence paint.  At the end of last week Ash mentioned several times that he was running out and, as painting fences is the one thing now guaranteed to give me some peace and quiet, we went off to buy more.  There was a special offer on and we came away with three tins of the stuff which I thought, going on ...

 So no blog post for nearly two weeks and of course there's a reason for that. Dementia moves at its own pace but I thought I had a handle on it all.  In fact I was so confident I had a handle on it all that I got cocky and began to relax. I'd decided, as you know, that I couldn't leave Ash for any length of time. I'd cancelled my twice weekly walks and spread the word that I wouldn't be able to go out for coffee and I thought all of that was entirely manageable.  Instead of the walks I'd start the 'Couch to 5K' programme (30 minute runs 3 times a week), instead of going out for coffee I'd ask people to come here and life could still offer some proximity to normality.  Except it hasn't quite worked out like that. A few months ago someone asked me how I managed to get things done with Ash following me around all the time and I blithely replied 'oh he doesn't do that, he's perfectly happy on his own' and he was.  Now however he isn...