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Showing posts from August, 2019

Time for reflection

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The nearly 6 year old has now gone home leaving time and space for me to reflect on what worked and what didn't over the past week.  So after due consideration and mulling it over in my mind I would have to say that there was nothing that didn't work.  There were one or two tweaks but all to the good so that was ok.  As he was here all last weekend with Jake I thought Ash might need a break so had planned activities which didn't involve him.  That lasted until lunch time on the first day when I realised that Ash really wanted to be at the nearly 6 year old's side as much as possible.  Tuesday afternoon then saw us at the beach with a friend and her grandson as planned but after that it was just the three of us and Ash was more like the old him than I've seen in a very long time.  He laughed and joked, played tricks, made things. mended things, sat with us, started conversations and was in charge of bath time at the end of each day.  What became increasingly obvious…

Not quite according to plan

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So this weekend didn't quite go according to plan not least because, halfway through the journey, I had a phone call telling me that mum was once again on her way to A & E following a fall.  This time it had happened in the middle of the night.  She'd been found on a regular check and staff got her back to bed but she was in pain through breakfast and very confused hence the decision to call the ambulance.  Got to A & E to find her a little dazed and with a beautiful bruise around her eye where she caught herself on the way to the floor.  We waited while she had x-rays and tests and then waited some more for the results.  They came in the middle of the afternoon showing absolutely nothing wrong; no broken bones, no abnormalities in her blood, nothing wrong with her heart or blood pressure and nothing wrong with her brain so once again she'd bounced.  I do wonder how many more times she can do this without any ill effects but for now I'm grateful she wasn't …

Ambushed

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A few days ago I told you I had started reading John Suchet's book 'My Bonnie: How Dementia Stole the Love of my Life' and I'm here now to tell you that after a week of almost solid reading I've finished it.  What struck me about John's writing was how much of what he was feeling throughout his wife's illness was so familiar to me and almost every time I turned the page I read something that made me think 'I'll quote that bit and write about it'.  But then I'd be past it and onto something else which affected me in exactly the same way so all I can say is that if you want confirmation of what I tell you on an almost daily basis then read this book.  The details of the dementia will be different I'm sure but I'm equally certain that you'll recognise John's description of his thoughts and emotions.  The one thing that really jumped out at me came towards the very end of the book when he talked about being ambushed by grief and …

Twists and turns of a weekend away

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A few weeks ago I asked Jake if he would come over for a weekend so that I could have a break.  He said yes instantly but the only weekend he could do was the one coming up.  That was ok and gave me something to look forward to and something to plan around.  First of all I decided to go to London.  I found a hotel in Covent Garden where I would feel safe on my own, decided where to go and what to see and was very, very excited right up to the point where I began to look up train times and discovered that the East Coast main line was closed all weekend.  I could have taken the replacement bus service but I didn't see that as something to look forward to so abandoned the idea and told Jake to put the weekend on hold.  He then came up with the idea of us swapping places - I could stay at his house while he and the nearly 6 year old came over here.  That sounded great so once again I looked up things to do and places to go and was excited all over again right up to the point where I r…

A lovely, lovely day

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I know I don't say this very often nowadays but today was absolutely lovely.  Yesterday I started to clear a flower bed which had become overgrown with some shrub or other.  I know very little about gardening but have got to the point where I think if I don't like something then it's ok to dig it up even if it's amazingly healthy and has flowers all over it and yesterday decided this particular plant had to go.  That first bit I cleared gave me so much satisfaction that I was outside in the garden at 9.30 this morning pulling/digging at roots and getting rid of buckets and buckets of the stuff until there was so much clear ground that I could begin to think what to put in it's place.  I've never, ever felt so much in control of the garden and it's a great feeling.  Added to that I spent the time topping up my tan while listening to an audio book so feeling good all round.

Ash was also in a particularly excellent mood and spent his day painting the trellis a…

D-Day and beyond

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Friday was a day of 'Ds'.  Dreadful, disastrous, debilitating, dark, daunting, damnable - I'm sure you get the idea.  The whole car crash of a day began with me commenting on some logs Ash had been to collect from a neighbour.  That comment was taken as a criticism (and I still have no idea why) and we spiralled into crisis from that point.  Once again everything was my fault, once again I was accused of never listening to him and once again I left the house just to get away from the shouting.  I walked down to the church and let myself into the porch where I could be out of the rain and retreat into my head.  Once I'd settled myself and gathered my thoughts I got up to leave and that's where everything descended into farce as I found myself stuck in the porch.  Well that'll teach me won't it?  If I'd retained an ounce of common sense I wouldn't have been in this situation in the first place, I would have calmed Ash down (or maybe even avoided makin…

Which memories?

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This memory business is a strange thing I've decided.  I have a friend with two siblings and she says her mum is fascinated with the way they each remember events from their childhood in completely different ways.  I talked about memories a couple of days ago and got brilliant tips on how to spark them to get conversation going which made me think about those memories all over again.  After 43 years together we obviously have lots but what I've come to realise is that the memories which are significant to me aren't the same as those which are significant to Ash.  Mine if I'm honest mostly revolve around holidays (almost all of which have been special in one way or another) and things we've done together and/or with Jake when he was growing up.  Thinking about it though the memories which mean the most to Ash are his time in the police (which spanned 32 years and led him into some unusual situations) and the work he's done on this particular house which in parts…

Living in the here and now

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In the 'Practical Help' section of this blog I've recommended three books up to now, 'Contented Dementia' by Oliver James, 'Somebody I Used to Know' by Wendy Mitchell and 'Five Ingredients' by Jamie Oliver  (that last obviously isn't aimed at those with dementia but has transformed our lives anyway by inspiring me to cook quick and interesting meals rather than a weekly menu on repeat).  I now have another book to add to the list which is 'My Bonnie; How Dementia Stole the Love of my Life' by John Suchet.  A friend had told me about a programme John had been on recently to promote a book written by his new wife but his was one I'd heard about a long time ago, had meant to buy but never quite got round to it.  The programme prompted me to have another look and now I can't put it down.  Although not yet very far into the book what has struck me is how often he is about to remind Bonnie about something they've done or a place th…

Is it possible to avoid worrying?

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Someone asked me this morning whether I worry about Ash and the answer is of course 'yes' but the worries come in different forms.  Interestingly when we first got the diagnosis my worries were about the future, about us and about me.  That last is quite hard to admit because it's a very selfish point of view but Ash had always been my rock, my shoulder to lean on.  When things went wrong he was always there to give me a hug and say 'don't worry, it'll work out' and I still miss that but I also know now that I can deal with almost everything life throws at us and, although a shoulder to lean on would be nice, it's not totally necessary to my comfort.  So how, when and why do I worry?  I have a general sense of worry about Ash's well-being that is a permanent undercurrent to my life.  Is he happy? is he comfortable? is his mind at peace? then there is the worry about the practical daily living stuff; can I make sure he wears clean clothes? can I pers…

The mystery of the missing washing up liquid

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Some things in this new life of ours make me cry, some make me laugh and then there are those things that leave me completely bemused.  I now know to search the cupboards if I can't find the slate cheeseboard in it's usual place or the mixing bowl where it normally lives and I've written before about the mug rack standing empty while one of the cupboards is full to overflowing with mugs.  Actually it's not only cupboards that I have to open, the last time the cheese board went missing it wasn't in any of the usual places but turned up unexpectedly several weeks later in a chest of drawers.  Two things today have stood out from all of those however.  Firstly the washing up liquid went missing.  I really have no idea where it's gone and went through every cupboard I could find before moving onto the recycling bin which was still waiting to be emptied this morning but that plastic bottle was nowhere to be found so I moved outside and went to look in Ash's shed…

Should we feel guilty?

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I seem to be bombarded at the moment by posts on facebook and emails dropping into my inbox telling me not to feel guilty in my role as 'caregiver' (new word that I've learnt but don't like).  The thing is that I'm human with all the imperfections that come with the condition.  So should I feel guilty when I know I'm not perfect?

Should I have felt guilty when I booked a place for mum in a home knowing that she would be staying there?  No, because I knew that I couldn't look after her and she wasn't safe on her own.  Instead of feeling guilty I knew I'd found the best possible solution to an impossible situation.

Should I feel guilty when I sometimes spend the night in my mum's empty house leaving Ash on his own?  No, because I know he can cope for one night and those few hours spent in my own company recharge my batteries and help me deal with the rest of my life.

Should I feel guilty when I leave Ash on his own while I meet friends for lunch o…

Conversation, what conversation?

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One of the things I miss the most about our old life is the conversation.  Being able to come home and tell Ash what I'd been doing; being able to tell him some small piece of information about someone we both knew which would then lead onto a full blown discussion about something else; being able to plan, even loosely, something which might or might not happen in the future.  All of that's now gone.  This morning I thought I'd tell him about a weird plant in the garden.  It's been there for a while and for some reason I thought a friend had given it to me so, although I didn't like it (and definitely thought it looked weird), I'd left it where it was.  When I mentioned said plant to said friend a couple of days ago it turned out that she hadn't given it to me and in fact it had self set so I was free to dig it up and put it in the bin.  I thought this was quite amusing so told Ash this morning and was rewarded with a blank look and nowhere to go with the c…

Don't just assume dementia

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Two years ago my mum began acting out of character and, amongst other things, accused people she knew well of stealing from her.  We knew this wasn't true and produced the evidence but she wouldn't listen.  In addition to that she was frequently confused and forgot things on a regular basis to the point where it was impossible to have a conversation with her and she said over and over 'my head is fuzzy'.  Both her GP and I felt it was the onset of dementia and a test was arranged.  She didn't do well on that test.  Not only did she not know what day it was or what year, she thought Margaret Thatcher was still prime minister, she had no idea where she was and couldn't tell the nurse anything about what she did day to day.  Part of the test, as some of you will know, was to draw a clock and then add the hands to the time given by the nurse.  She could draw the clock but couldn't get her head around what she was asked to do with the hands and just gave up.  Th…

A drama queen in the making

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I know I'm not the only one with sole responsibility for someone, there are many others in the same position, but the fact that I'm the one responsible for Ash and knowing he couldn't cope if I wasn't there is really only just starting to dawn on me and in the process I've realised that I'm in danger of becoming a drama queen.  In our house we've always brushed off illnesses (ask Jake how many times he was sent to school with the words 'you'll be alright it's just a .......' ringing in his ears).  Ash hasn't been properly ill since 2000 and I've been similarly well since I stopped working with small children in 2016.  Now however every ache has me think the worst.  Hands starting to swell?  It's obviously the beginning of arthritis rather than the heat which has always had that effect on me in the past; pins and needles? it must be the beginning of MS rather than the fact that I've been sitting with my leg tucked underneath m…

I love this blog!

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Since my post yesterday on the trials and tribulations of having a wood fire I've had advice and offers of help from several people which is all brilliant.  One email which really got my attention told me about lightweight chainsaws and I immediately began the research.  A message came through with an offer of help if Ash wouldn't show me what to do so, if I can work out how to get the lesson without him knowing, that will be really helpful.  Both of those are excellent starters in this new part of our adventure and have fired me with enthusiasm and a knowledge that I 'can do this'.  However just as I get all excited and ready to begin Ash comes through to talk to me about the wood situation and when I said that it was important to keep the wood we already had he agreed and said he'd start chopping/sawing/collecting.  This means that I'll have to wait to put my plan into practice but it gives me a little more time to get myself ready and while I'm waiting I…

Another difficulty is about to raise it's head

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I know it's still summer but with Ash replacing the floor of the wood shelter my thoughts have been turning to log fires and the wood needed to keep the fire going every night.  Over the past few years we have often put things such as old garden chairs to one side to chop up for kindling and have collected branches and logs from various places, some from friends, some from the side of the road, some from woodland walks,  all of which have been put into Ash's 'wood yard' (small area at the back of the patio) ready for when we need them.  Ash has then used a variety of implements (no idea what they all are/were) to chop, split and reshape so that we've been able to have a wood fire every winter night for the past 34 years.  So this has been going on for quite a while but then I noticed him buying bags of sticks each week because apparently we'd run out which I thought was odd but didn't question it and let him carry on.  Then we had the final fire of last win…

I'm not the only one

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Through writing this blog I'm discovering again and again that it's not just me going through all of this emotion, through the highs and lows; the good, the bad and the ugly; the great memories; the laughter and the tears.  Each person with dementia is different to every single other person with the same diagnosis but the feelings experienced by those sharing that life are frequently recognisable by others in a similar position.  Often I write a post and then think everyone's going to assume I'm going mad or being selfish or not being supportive enough and  suddenly, out of the blue, I'll get an email saying 'I feel as though that's my life you're describing' and you have no idea how much better that makes me feel.  It really isn't just me that goes through feelings of panic every so often, who is sometimes exhausted just through trying to stay positive, who wonders what happened to the best friend she planned to grow old with, who now shares he…

Decline and improvement

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Dementia really is one of the most frustrating diseases/disabilities.   Decline and improvement seem to run parallel and just when you think you've got a handle on everything the ground shifts beneath your feet.  I've noticed a slight decline in Ash's speech recently and he seems to struggle to find the right words for what he wants to say.  Having said that so do I on numerous occasions so maybe this has nothing to do with dementia.   I think it does but what do I know.  His eating has also slowed down and he's stopped making any contribution to the weekly shopping list and then there was the day last week when we were watching some children playing out on the field in front of our house and he pointed to one of them and said 'is that .............?'.  The boy he was pointing at did bear a resemblance to one of Jake's peers but that 'boy' is now in his 40s and this boy was around 9 years old so that stopped me in my tracks.  On the improvement side…