Memory for two

Thank you to everyone who sent messages of support after my last post.  I appreciated every one of them, especially the ones from those who've gone through the same thing and could say, in effect, 'this too shall pass'.  You gave me ways of looking how I was reacting so that I could make sense of it and it made all the difference. In return I can tell those of you who aren't quite there yet that there is life beyond our daily battles.  For me my social life is looking up, my job is just what I hoped for (if far more exhausting than I expected) and I have at least one adventure a month planned until the end of the year.  I also get to spend, possibly for the first time since he was born, uninterrupted time with the 9 year old so life is pretty good right now. That's not to say that there aren't moments when a memory comes out of nowhere and knocks the wind out of me.  It happened today and I teetered on the edge of the abyss and cried and cried.  Luckily a f...

 Did you know that Ash has been in the care home for five months now?  The time has flown by and he's been happy since day one which is wonderful.   My life, post dementia, is also good.  I've already had adventures this year and we're only just past the first quarter.  Australia was of course the big one, and amazing enough to have lasted me until 2024, but there has also been a trip to the Cotswolds, a 1970s weekend, trips to the theatre, lunch out with friends and lots of other things that I thought may never come my way again. I'm working my way through the house and turning it, room by room, into a space just for me and, big news of the moment, I'm going back to work.  This last had never been in my plans for the future but it turns out that Ash being in a care home, even with government funding, costs far more than I expected so needs must and all that.  The very lucky thing about it all is that, on the day our financial situation sank in, m...

 This is what happens when I don't post every day!  I miss one day because I'm busy doing something different and then I can't think what to say and then I get lazy.  But, as you can see, I've given myself a stern talking to and am back up and writing once again. So what was I doing to keep me so busy?  I had friends come for a sleepover and it was wonderful.  It's so long since I've been able to do anything remotely similar that I'd forgotten what fun it was.   I cooked a meal, there was wine with it and ice cream afterwards (not my normal diet at all so it felt very decadent) and we watched a film in front of the fire.  Bedtime was late, chatting was on the agenda and it was all very lovely. This is how life used to be and it's very much how I hope life will be in the future.  I already have plans for the summer once I've got the garden sorted out and, once again, I'm feeling human so all is well in my world right now. I hope it is in yours...

I've spent the last few days clearing out Ash's clothes.  You might think this is a bit soon or you might wonder why I didn't do it before especially as, for the last few years, he would only dress in black.  Black trousers, black shirt, black sweatshirt, even black underwear, so much black everywhere and, mostly, it suited his mood until that's how I thought of him. The clear out though reminded me of another Ash; one who wore bright colours, who owned suits (five of them to be precise), who donned bright bow ties with a wing collared shirt, who sported what we called his 'whacky hat' when ski-ing or out in cold weather.  All these showed me that I wasn't mistaken in the man whose life I've shared for forty six years.  He wasn't always anxious or mean spirited or dour, he used to be such a fun human being.  He used to make me laugh, took me on adventures, taught me to seek out the good times and to enjoy life. Dementia stole that person from me; the...

 Went to see Ash again today and found him in good spirits as usual.  It was cold and wet outside so this time we went to the garden centre where we don't have far to walk before we're in the warm.   My usual habit is to arrive, position him outside the toilets with instructions not to move until I re-appear and then off I go to do what a girl has to do (especially when it's cold and wet outside).  Often when I get back to him he's in conversation with some unsuspecting passerby who's almost always wearing a slightly puzzled expression but generally all is right, in Ash's world at least.   Today I emerged to find him gone!  First I was taken by surprise and then I was gripped by panic.  The toilets you see aren't far from the exit and a group of men were on their way out of the door.  What if Ash was amongst them?  What if I went out there but he wasn't amongst them?  How on earth could I have been so stupid?  All of these...

 I had so many lovely messages after my last post that I'm more determined than ever to keep up with the blog from now on and it's nice to know that you want to hear about the next phase in my life. Elaine also wanted to hear more about Ash but I'm finding that difficult.  Not because I don't want to talk about him but more because I'm no longer a huge part of his life and definitely don't understand what goes through his head any more. Before I went away I visited every week.  We mostly walked into town and stopped somewhere for a cup of tea, always the same route and always the same tea/coffee shop just because I felt on firm ground for conversation.  Not real conversation of course because most of the time I have no idea what Ash is talking about.  Words come out of his mouth but in no particular order and, although they have meaning for him, all I can do is nod, smile and make noises signalling agreement.  Our walk into town however means I can ramble o...

 Hello.  How are you all and, more importantly, how is the dementia that dogs the lives of some of you? I can't believe how long it's been since I've seen you and there is so much to tell that I'm not sure where to start. Part of me has wondered whether I have anything relevant to say now that Ash is no longer at home but then I thought you might like to know how I'm working my way through the aftermath.  I also wanted you to know that there is life the other side of it all and that, if you can gather the strength, your new life is full of possibilities.   The first thing I should tell you is that the run up to Christmas was more stressful than I expected.  After two years of scaled back decorations and muted plans I'd decided that it was time to reclaim the fun that was always part of our family celebrations so the boxes came out and Jake and the 9 year old came to help.  I was looking forward to it all and the very last thing I expected was to find m...

 I had a lovely visit with Ash this morning and, as a consequence, am feeling much better life for both of us.   I must admit that my heart sank shortly after I got there.  I'd been greeted with the tightest hug which was wonderful but that was followed by complaint after complaint about how everyone there was horrible.  I didn't quite believe him but it did all make me wonder and I wondered right up until we walked out of the door and he started telling me how lovely everyone was!  Today I thought we'd try the garden centre only that meant going in the car and I wondered how he'd cope.  Needn't have worried because he chatted all the way there about everything we drove by which was in complete contrast to the silent journeys we made at home and just showed how much happier he is in himself. We were out a couple of hours and Ash chatted the whole time.  Not all of it made sense but there were some very astute comments about the price of Christmas ...

 This post might seem at odds with the one I wrote yesterday but if you've lost someone you love you'll know how emotions differ from day to day and even moment to moment.   Yesterday I was happy from beginning to end of the day.  Today not so much which is why I've decided that grief is a very odd thing.   I'm not missing Ash because he hasn't been 'my' Ash for so long that I'm already used to being without him.  I'm happier than I've been for years, much more relaxed and looking forward to whatever the future brings and yet ..........  And yet there are moments when thoughts of him come out of nowhere and knock me sideways.  Mostly, I've realised, they're not to do with memories but more that I know the old Ash would have loved the things I have planned.  He'd have loved the trip to see friends in Australia (we've been twice and I think he always thought of himself as an honorary Australian), he'd have loved the 9 year old c...

 No decorations up yet, they're waiting until Jake and the 9 year old are here next weekend, but Alexa's been playing Christmas music all day and I'm getting in the swing of it all. I took my 'robin' mug out of the cupboard this morning and felt just a little sad when I remembered that I bought it last year to cheer myself up and to help inject some Christmas spirit into my life.  Apart from the very scaled down decorations that was it so this year I've decided there should definitely be more. I've already bought myself a Christmas hat which is bright red with white fur trim.  I was about to include a link to it so that you could see how lovely it is but they seem to have sold out so you'll have to wait until I've taken a photo. Then there's the robin mug, the Christmas quilt cover I've bought for the 9 year old to use next weekend, and the research I'm doing for presents.  I love present buying. I like thinking about what people will lik...

I know I'm going to be scarred for ever by this whole dementia experience but, equally, I feel that not all of those scars are bad ones. There's no denying that the last few years have been more difficult than I could ever have imagined but, when I look back to the me who cried every day for the first three months, I can't believe I could ever have been so frightened. Ash wouldn't talk about what was happening or how he felt so there was no way the two of us could plan for the future and I just couldn't see how I could ever manage without him.  He really was my rock, my shoulder to cry on, the person I wanted to tell everything to and I felt that without him there would be nothing of me. Well I was wrong.  Of course I was, but I've needed the past five years to show me.  I've been thinking recently that, although the anticipatory grief is gut wrenching at times, the fact that it wasn't a case of 'here today, gone tomorrow' has helped enormously. ...

 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...