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Showing posts from March, 2019

Reality check

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My good mood lasted right up until I got home last night but then the man who used to do all the cooking in this house tried to set the timer on the cooker.  He stared at it for ages, then got down on his knees to get a better look and finally managed to set it for 20 hrs instead of 20 minutes with no concept of how long it was taking to go through the clock.  This sent shock waves down my spine and scared the life out of me.  Jake thinks it could just be Ash's way of reacting to the stress of everything I'm going through with my mum and he's probably right but on the other hand it could be another step down the hill of dementia and I won't really know until things have calmed down a bit.  Then this morning we went grocery shopping and he snapped at me.  In our previous life this never happened and it always shocks me when it happens now.  I'd been awake since 4am again and was so tired I just dissolved into tears which of course made it all worse.  However the sit…

The benefits of retreat (however short)

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What a difference 24 hours of silence and solitude make.  Yesterday morning I really thought the stress had finally got to me and that I was going to be properly ill but a day by myself with no-one to talk to and nowhere to be made all the difference.  I had things to do but very satisfying things and ones I could do in my own time and at my own pace then a long phone chat last night with someone I hadn't seen for ages and I was set up for a peaceful night's sleep.  For the first time in weeks I slept past 4am and when I finally got up I looked at the bed and couldn't see where I'd been.  Best of all I went out for a run.  Those of you follow this blog will remember that I twisted my foot in a pot hole a couple of weeks ago and, because it's still been twinging every now and then, I haven't wanted to risk damaging it further so I haven't run for over 2 weeks.  This is a shame as I was 6 weeks into the 9 week 'Couch to 5K' programme and had actually …

And now for something completely different

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I had a meeting this morning for work so set off at 8.30 all prepared.  Got about 20 minutes into the journey and felt so sick that I pulled in, phoned to tell them I wouldn't be there and headed for mum's.  What I needed was total silence and sleep and an empty house was waiting.  I've been expecting this to happen ever since my hectic day on Monday which began at 10am with a meeting at mum's bank to activate the Power of Attorney.  This was followed by a visit to the estate agents to sign papers and get her  house on the market then on to a work meeting, followed by a visit to the home she's going into for the next two weeks, followed by an appointment at her solicitors, followed by a return visit to the home to complete paperwork then back to the house for a bowl of porridge (only food in the cupboard) then on to the hospital to visit her before a drive home arriving back at 8.30pm.  For some reason the next day my brain refused to function.  Anyway a few hours …

What's your crutch?

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Everyone has a crutch I think.  Something to get them from day to day when life becomes difficult and, as long as we only use it for support occasionally, that's ok.  The problem comes when we start to rely on that crutch.  Approximately four years ago I gave up alcohol (apart from champagne on Christmas Day which I really think doesn't count) and have been thinking recently that it's such I good job I no longer drink.  My real problem is that I like the taste too much and have an inability to say 'no' when offered another glass.  Unlike most of my friends I find it almost impossible to drink only one glass of wine and, instead, drink until I fall over and then go to sleep.  This is not conducive to a fun night out and gets very wearing for those around me.  Drinking I think also becomes a habit.  I would get home after a stressful day at work and Ash would be waiting with a glass already poured for me.  If it had stopped at that things would have been fine but it …

Life is good (I think)

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When viewed alongside many others our life is pretty good at the moment.   Busy but good.  You'll be pleased to know that Ash has his driving license back which has boosted his self-esteem and well-being beyond my wildest dreams as well as making life easier in an area where the nearest pint of milk is three miles away when there is none in the fridge.  I haven't completely relaxed though (which is why there has been no big announcement) as he still has to undergo a cognitive assessment before this can be laid to rest for another twelve months.  The assessment was supposed to happen last Monday but the OT was off sick and she hasn't yet re-arranged so we're ok for a while.  The thing is his driving really is still up to scratch and I am sure he'll pass but there's always that little nugget of doubt burrowing it's way into the back of my brain.  So that's one area of 'good'.  Then there's my mum, still in hospital but, on yesterday's evid…

Managing day to day life

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Last night someone we know rang to ask Ash for advice on starting his tractor/mower.  Ash has been using this particular tractor for the last 10 years or so and there's definitely a knack to getting it started but, even for those of us not living with dementia, it would be difficult to describe how to work something you haven't even looked at for six months and to do this over the phone so he arranged to go over today to show in person.  I listened to this arranging with a sinking heart.  He was going over late this afternoon on his own (we now have the new driving license but there may be another chapter on that so haven't posted about it), to my mum's house where he'll need the alarm code to get in the house and he'll be working with someone he doesn't know very well.  This had 'potential for disaster' written all over it but what to do?  I suggested phoning and rearranging for Saturday when I could go too but that went down like a lead balloon.  …

The benefits of living a life affected by dementia

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Those of you who've been following this blog will know about the chaos surrounding me at the moment.  Life has been a little demanding and there have been times when I thought my head was going to explode but I have to say that this is mostly connected with sorting out my elderly (and slightly difficult) mum with dementia only slightly complicating things.  Today however the dementia aspect was definitely a help.  I woke up with my head pounding and stress oozing from every pore as I tried to work out how to 1) organise mum leaving hospital next week 2) find a care home for two weeks starting on the day she leaves hospital 3) organise and sell the house during those two weeks (you'll see here that I'm still the eternal optimist) 4) do viewings around mum and the wreckage of daily living that follows you when you're nearly 90 if house not sold immediately (I'm also a realist of sorts) 5)manage work stuff that can't be ignored or postponed.  On top of all that it…

Forums

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The topic for today is forums.  Do we like them or not?  Are they useful or not?  Do they do any good or not?  I have very mixed views on forums and these views have come to the fore recently hence this post.  Personally I'm not good at baring my soul to the world.  I know I do it a little on here but at least I feel some sort of ownership over what appears and what replies come in.  I also get the feeling that I am surrounded by like-minded people.  Forums are different though and some are more in tune with how I feel than others.  You may have noticed I'm an optimistic soul determined to look at the positives in my life and hope those of you out there reading what I write feel the same, unfortunately other people don't always view things in the same way and once or twice I've been shot down in flames on a forum for being too positive.  Recently I'd taken to messaging people privately but then, not always sure it would be obvious that I'd messaged, posted to t…

A low point

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Have you ever had one of those days where everything seems to go wrong from the minute you step out of bed?  I'm sure you have, we all have and my latest bad day was yesterday.  It began with giving Ash the wrong mug of tea.  This wasn't actually a big deal just a pointer to the direction the rest of the day was heading.  Next I went out for my run (2nd run of week 6 and the first I'd actually looked forward to in the whole programme).  Warm up walk up the hill and then break into a slow jog with an eye on the end of the lane rather than on the road directly beneath my feet which was unfortunate as I failed to spot the pothole until my ankle had given way beneath me.  At that point I was about 2/3 of the way along the lane and I am here to tell you that it's a very long way back when you're in agony and moving at a slow hobble.  Got home, told Ash and then had my breakfast and went to get ready for the trip to mum's where a friend was helping me finish clearing…

To tell or not to tell

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An article from a website I follow dropped into my inbox the other day asking 'when should you start to tell people about a diagnosis?'.  The question was actually framed around what to do if the person living with dementia doesn't want anyone to know so I didn't read any further but it did make me think about my experience and how I felt all those months ago.  We got the news five days before Christmas in 2017 and I've written a lot about how we thought our world had come to an end, how Ash wouldn't discuss what was happening and how I couldn't talk about it to anyone without bursting into tears so actually breaking the news seemed almost impossible.  In the end I emailed 4 very close friends, telling them and also asking them to keep it to themselves.  This really wasn't anything to do with not wanting people to know but much more about not knowing how to put it into words and a feeling that, by putting it into words, it made it all so much more real.…

A really lovely day took me by surprise

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Jake has talked to staff at the hospital mum has been moved to and told them about the situation here.  As a result they have agreed to cut my stress levels by deterring her from phoning me to demand I fetch her home which meant I slept last night for the first time in nearly two weeks.  That sleep in turn meant that I woke feeling rested and peaceful.  Next, two busy parts of my day were cancelled which meant we could go shopping at a reasonable time.  Ash struggles if we go grocery shopping any later in the week than Thursday but recently my Thursdays have been full so the trip has been happening late in the day when I've been really tired.  Because of those cancellations, for the first time in weeks, we had a normal trip to our local town.  Lidl's followed by Tesco followed by M & S for coffee and croissant (or tea and scone depending on which one of us you talk to).  The sun was shining, other people were few and far between and all was relaxed.  It was so nice to get …

It's the small things that you notice

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Most of the time, because we have strategies in place, Ash's dementia isn't too apparent.  In fact at the weekend a new friend said 'he doesn't have it very badly does he'.  She then looked at my face and said 'or is it that you manage it well'.  I'm actually quite proud of the fact that she thought he didn't have dementia very badly because at least it proves those strategies work and I have to admit that I do sometimes forget what's happening to him.  But then something quite insignificant happens which brings it all flooding in.  Yesterday it was when I had the phone call saying that the light was flashing on the answerphone (which we've had for around 10 years) and asking what it meant.  I explained that someone had left a message and he could listen to it.  That worried him.  If he listened to it and the light stopped flashing did that mean we wouldn't be able to listen again and the message would be lost?  And this was the man who …

Suddenly I can breath again

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I don't know if you've ever read the Julia Donaldson book 'A Squash and a Squeeze' but the story reminds me of my life at the moment.  For those of you who haven't come across it a little old lady complains to a little old man that her house is too small.  He tells her (and I don't know the order in which this happens so if you want the detail you'll have to read it) to take a cow into the house, then a pig, then a goat, then a chicken etc until her house is so full that she can't move.  Next he tells her to let them out one by one until the house is empty once again.  When she's done that all of a sudden her house seems huge.  I think this is a metaphor for what's happening to me right now.  First Ash was diagnosed with dementia and I thought my life was so complicated there was no room for anything else.  Then Ash's driving license expired and he was bouncing off the walls and I thought that life was so complicated there was no room for an…

Friendship makes all the difference

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I told you a few weeks ago about Wendy Mitchell and her book 'Somebody I Used to Know'.  I read it and, even though I can never know what she's going through, I recognise the positive tone and the can-do attitude.  I have followed her blog  https://whichmeamitoday.wordpress.com/ever since and something I read on there a couple of days ago struck a chord which I felt I should share with you.  All of our friends have been so supportive of our situation that there has never been a question over whether or not we're included in village events, invited out for meals and weekends away, involved in celebrations  and generally made welcome wherever we go.  This has made such a difference to us as a couple and Ash in particular and it would be very easy to take it for granted.  These are our friends after all and you always hope that friends will be there in times of need but the important thing is that the welcome isn't forced, the friendships are real and no-one is avoidi…

Update on my chaotic life

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Yesterday began with a meeting at work, moved on to coffee or two with a friend then a visit to my mum (still in hospital).  Left the hospital and went to look at a very smart sheltered housing development for mum which was lovely and just what she needs I think.  Left there, drove home, collected Ash and the list and went grocery shopping before getting home at 8.30pm all of which hopefully explains why I didn't post on here last night.  Rather than typing away as I am now I was snuggled on the sofa with my brain in neutral.

Today was equally busy but focused more on one area.  This morning Ash and I went to mum's to start clearing her garage.  This isn't a job for the faint hearted so I'd suggesting taking the truck which we could fill ready for taking stuff to the tip.  Ash readily agreed which surprised me until I realised he thought he would be driving.  Slightly sticky moment when he discovered he wasn't but I really do think he knows life is difficult for me…

A day in which things don't go quite according to plan

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Having been told on Tuesday that Mum was being moved to a small local hospital so she could recuperate and get well enough to go home we got to this morning and she still hadn't moved.  Never mind, she was still safe, looked after and moving this afternoon so I started with my well organised day ie. driving to a local nursery to drop someone off, back to take Ash to the doctors (to try yet again for approval to drive until the decision comes through from the DVLA), home to sort out some paperwork for work, back to the nursery for a pick-up then finally the usual Thursday afternoon grocery shopping trip.  Managed the very first action on the list and then the wheels came off, the result of a confused phone call from my mum to ask where she was, what was happening and when she was going home.  I know she's nearly 90 but she really did sound like a frail little old lady and I went into freefall.  Luckily I have the most amazing work colleagues who instantly agreed to pick up the …

Being relaxed really is the key

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Last night was really lovely and reinforced everything I've been saying about my moods being reflected in Ash.  If you read yesterday's post you'll know that I came home particularly stressed and exhausted and found Ash more uptight than I've seen him in a long time.  He had no idea what day it was, where he was or what time I'd been due home.  Apart from the couple of years leading up to the diagnosis home has always been my sanctuary and as soon as I've walked through the gate I've felt the stresses of the day begin to melt away.  I was surprised to find that yesterday was no different.  I walked in the back door and, even though I could see what was facing me, I felt myself relax and that really is the key to everything.  Tea was organised even though Ash didn't realise it so that was easy, we ate on our knees in front of the fire as we still have no central heating and then for the next three hours we watched all of his favourite quiz shows.  As we …

A very busy day was had by all

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Left my mum in high spirits on Sunday and then phoned yesterday to see how she was only to be told that she'd packed her bag and was asking where her car was as she was going to sleep in it.  She'd also been into a store cupboard looking for her passport.  Now my mum might have problems with her memory but this wasn't like her at all so I asked if she'd been given the antibiotics prescribed for the urine infection the doctor had diagnosed in A & E on Saturday night and was told there was no record of that diagnosis or the prescription.  I pointed out that there might be the reason for her confusion (as opposed to them looking at her and seeing a 90 year old who 'obviously' had dementia).  Phoned this morning and they confirmed the original diagnosis and said she been prescribed antibiotics.  As a result she was much calmer, it's just a shame they hadn't worked it all out for themselves!  I was also told that, although the doctor hadn't yet seen …

Looking on the bright side

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For the past few weeks I have been stressing about Ash's lack of driving license and all my thoughts have been taken up with that so I find it very interesting that since last Saturday afternoon and the trip to the hospital with my mum the driving license issue has hardly been on my radar.  I'm sure there is a lesson in here somewhere even if it's just that the brain is perfectly capable of prioritising for us when we need it to and when I phoned the DVLA just now to see where we were in the system I was pleased to hear that they have now heard from the memory clinic and we've moved up the chain but I was unfazed to hear that there isn't a time scale for the final decision and that's because there is only so much room in my head for crises.  Ash did get a little antzi about still not being able to drive but I told him I couldn't deal with any more stress so he'd just have to go with the flow.  This attitude rarely works nowadays but something must have …

Keeping all the balls in the air

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To say this has been a busy weekend is an understatement to say the least.  Busy getting ready for friends coming to stay on Saturday night when I got one of the dreaded phone calls saying my mum had fallen again.  My first reaction to one of these phone calls is to think 'how on earth am I going to split myself in two?'  My second is to go into full blown panic mode and make phone calls left, right and centre to see who can get to my mum.  My third is to think it all through carefully and work out a strategy which covers as much as is humanly possible.  All of this meant that I went from 'I can't possibly come' to 'I'll be there in an hour if someone can go in the ambulance with her' in approximately half an hour and sure enough that's exactly what happened.  I got to the hospital at 5pm to find her sitting in the waiting room in a wheelchair and that's more or less where we stayed (other than a couple of outings for x-rays and a chat to the do…

A paler version of us

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On Thursday night we went to a fundraiser in the village.  It was a race night and, I think, the third one held over the years to raise money for our village hall.  In the past we would have been involved right from the very beginning.   From that first 'Why don't we have another race night?' to 'let's get the diaries out' to 'shall I order a new DVD?' to 'can anyone remember how many bottles of wine we got through last time?' and on until we reached allocating jobs, setting up the venue and making sure everyone had a brilliant time.   Ash would have manhandled tables into place, fetched the wine from the supermarket, manned the bar and generally been in the thick of it.  This time was a little different.  I'd bought 2 race cards (tickets for the uninitiated), bought and named 2 horses and said I would definitely be there but was unsure about Ash.  Then he was asked to be official photographer which he's done many times at different even…

Difficult day got better

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A very difficult morning of juggling work, personal stuff and tiredness (from a lovely social excursion last night) topped off by my mum exceeding herself in the awkwardness stakes.  Not quite sure how I managed to stay sane through it all but every obstacle has a silver lining and Ash completely rose to the occasion.  I've noticed this before actually.  When I really need him he's still there for me and that makes all the difference.  So not all bad and then lunch with one of my oldest friends (from primary school - 52 years and counting) who listened and listened and listened while it all came pouring out.  Felt much better afterwards and once again I realised the value of friends.

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