The Changing Face of My Dementia……..

I’ve written many times about the need to keep ‘doing’ with dementia. You stop, and within a short amount of time, you’ve forgotten how to do that simple task……for me, at the moment it takes a couple of weeks of not doing something before I start to get in a pickle…

That’s why the Christmas break always comes with a health warning as routine goes out of the window…..

I thought I’d covered most angles this year……typing poetry, trundles round the village taking piccies……but I hadn’t banked on dementia sending me a curved ball…..

Of course, I hadn’t travelled on a train for a while, or booked a cab to pick me up…..

So when my keyboard on my iPad stopped working, I had to go to the Apple store in Leeds….I booked the cab as usual, no problem there…..but when we got to the station it came as a huge surprise that I had to pay her!!😱🙈🙈……I usually have the right money in my glove already sorted but I had to faff about trying to find my purse……even the taxi driver commented how I wasn’t as organised as usual……

The train times have also changed and it was so hard to work out what time train to get back and work out which village bus I would get….the numbers just jumbled in my head…I’d also forgotten the existence of my sunflower lanyard that might have saved me the hassle of explanation when I needed help…🙄

Once I got back home with the keyboard, it also took a while to get use to…..I’d been without it for more or less a fortnight so had been using the keyboard on the screen…slowly…. So when I fitted the new one I just stared for a while thinking ‘ok, so what’s next’….then luckily just typing brought it back to me, but it took a while before all the words made sense and it was natural again…so many of the keys seemed to be in a different place 😂🤣

One thing I’ve never done in my life before is gone to bed and left the TV still on and entertaining itself…..but that also happened the other night. I don’t sleep much and could hear a TV somewhere but assumed it was next doors humming away. Once 2am came it was still rambling away and I thought next door had gone to sleep sat in front of it….it was until I got up for the loo that the talking became a tad louder 😳. I hung over the banister and sure enough,,,it was my TV!!!!!…I can only think that I’d gone out of routine of what I usually do l before I go up to bed, got distracted in some way, and simply left it talking to itself..🙈

Changing abilities comes hard, especially when you notice them happening. Many don’t notice, of course, or they don’t intuitively associate it with their dementia. The consequences of not sticking to ‘doing’ are quite frightening as you don’t even know the ability has become detached from you until you try and do it again…….it’s a fine balance and juggling act that we have to play when living with dementia. Some are aware of the game, some sadly aren’t…..even I become unaware sometimes……..and other times strange things occur without me even realising ….

I’ve still another quiet 2 weeks to get through before my calendar really comes alive, so I just need to find ways to ‘keep doing’ or getting back into the swing of things will be harder….

 

 

 

First blog of 2020……

I’m here sat with Billy typing away. It feels so calm in his presence after what’s been a roller coaster break. I adore the run up to Christmas and Christmas Day itself but then my mood drops as the quiet begins and festive decorations look out of place, lonely and the magic of anticipation having left them….

I trundled in the dark early morning, thinking he’d want to go out but Billy thought it was more snug inside sat in his Christmas box…

The village feels so safe even in the early morning. I have my light on my stick shining a path through the darkness

Even a shadow appearing at the side of me didn’t spook me as I heard the panting of the faithful dog taking its owner for a walk…

This time of year is my least favourite and double edged. The joy and expectancy of Christmas followed by an uneasy lull, with decorations and lights suddenly looking out of place and wrong. The confusion everyone experiences of not quite knowing what day of the week it is – welcome to our world…….is more intense…

My girls often use to go to their dads Boxing Day, so that’s when my decorations always came down, Christmas over, so I suppose that feelings lingers on now. My heart use to break as they left and silence filled the house. But since dementia it’s become a different uneasiness, a sadness like no other.

I set out with all good intentions of ‘doing’ , of not letting it lull me into closing my eyes, but it never works and didn’t this time. That inability to help your daughters with the support they need and feeling that sometimes the support is one way and not the way I want it to be…

I’ve said this often before, that ‘doing’ is my way of keeping dementia at bay. I’m a great believer in keeping my brain active through all the events, talks and research participation. All of us who remain involved remain capable for longer. As soon as people stop doing those things and stretching themselves they decline far quicker. Dementia seeping in and clouding you’re thoughts.

With dementia, if you’re encouraged ‘to do’ that ‘doing’ helps fight dementia for that day. I’m not saying it’s easy and the Christmas break is a classic example for me.

There’s nothing more comforting with dementia than sitting with your eyes closed but that’s dementia lulling you into that false sense of comfort. But when I just sit, and close my eyes, within no time at all I can feel dementia seeping into my brain. I always say I’d rather die of exhaustion than dementia and it always makes me sad to see people just sitting for any length of time. But over the last 2 weeks I’ve found great comfort in doing just that, snug with my eyes closed. I’ve forced myself to go out for a trundle each day just because, otherwise I’d just close my eyes listening to the silence  as it’s soooo nice.

I don’t blog as I’ve nothing to say. It would probably be sad blogs after Christmas and don’t want to bring everyone else down. No talks to type so instead poetry from my trundles have kept me typing. I really need a dictaphone or something as the poems pop into my head as I’m trundling along and when I get home and try and type them they come out all different as the moment has gone….but at least they’ve kept me typing and I’ve had some lovely trundles…..

I’m afraid Twitterworld has had to put up with me posting them on there..another world that goes quieter over the holidays….but Twitterpals have kept me company, new and old.

I say ‘no talks’, I did in fact have 2 to write but words wouldn’t come into my head. The fog hiding their existence as the routine of writing them had gone. It’s actually fortunate that it’s a slow start as I couldn’t cope going from zero to busy.
Over Christmas I could feel my brain becoming more and more gluey as dementia rubbed its hands in glee at my idleness.  I find it hard to motivate myself as doing nothing becomes the norm and is wonderful. I tried drawing again but that was a disaster with shapes, once easy, were now difficult to master, so that idea was binned. Instead the faithful scrabble and solitaire repeatedly done over and over without becoming bored took its place along with the peace of closing my eyes….enjoying closing my eyes far too much without the benefit of a gratifying slumber…

Am I feeling sorry for myself? Probably….but now I need consistency and routine 365 days a year and the Christmas break just erases that and unsettles me……don’t get me wrong, I had the most magical Christmas; enjoying Stuart’s vegan delights, the company of Sarah, Gemma, Stuart, and of course Billy, going for walks, watching films but how I long to see a full calendar again….then I can worry about being too busy…..🙄……and today I have my first talk to give so hopefully tomorrow’s blog will be more upbeat…..

And Billy is there for me if I need reminding to enjoy the moment…..

  

 

My inability to choose the right house, but I love it…..

I was looking through the apps on my iPad yesterday and suddenly saw one for my Home Insurance…..it got me wondering how long I’d actually been in my village house….it must be more than a year, I thought to myself, but couldn’t work out how long. So I had to fo some digging amongst paperwork to find out…turns out ivebeen here almost 4 years to the day…😳😳😱😱😳😳😱😱…how can that be? Sometimes it feels like I’ve been here forever, other times, like I moved in yesterday…….how weird to think it’s 4 years…that totally shocked me and I had to check other paperwork to make sure it was true!

Anyway, the reason for typing this was when I looked around my house yesterday and realised how totally inappropriate a choice it was for me when I did move here….as I stopped to draw breathe at the top of the stairs 🙄

and looked out onto my garden that needed tidying…again…..

But would I change it and move again…?…..well I never say never any more, but I very much doubt it.

I’d spent my life loving the opportunity to move to a new house. The new adventure of discovering a new area, a new house to make my own, all the work needing to be done and doing most myself. I adored that part. But when I chose this house, me and my daughters just didn’t realise I just wasn’t capable of making the right choice. Dementia had already taken that logical ability away from me….we just didn’t know it at the time..

I clearly remember standing in front of the big picture window in the living room, staring out at the view, and saying, “I love it, this is perfect’. I doubt whether I’d taken any notice of the rest of the house. The 3 bedrooms I didn’t need, the gardens I certainly didn’t need, the steps I would trip up and down outside. So much was wrong, yet that one view sold it to me.

I live upstairs when I’m there during the day and chose the room at the front as my room. I could have chosen the bigger room at the back with the fitted wardrobes  but the one at the front has the same view as the living room, only higher, so what’s not to like….?

I had to move to a cheaper area to pay off my mortgage. It was an expensive village so I had to choose the cheapest house in a beautiful village. I was lucky and had enough money to pay for the path at the front to be widened. I was continually making eye contact with the garden at each side as I wobbled over, so it had to be done. But the workmen put tramlines either side for me to follow so I don’t think I’ve fallen in since….🤔 well I did keep tripping up the steps so I just painted luminous yellow stripes down each, so they help now…..mmmm looking at this piccie, they need a refresh me thinks…

I couldn’t see the grab rail up the stairs as it was pure white and blended into the walls, so I stuck some blue electric tape at regular intervals and had another grab rail fitted the other side, so I use both to climb the stairs now and just accept that I’ll be puffed when I reach the top…

And the big spare room is my memory room where the walls are covered with photos and boxes of memories to calm me on a bad day

The small spare room an office that I don’t really need…

But we are where we are. The thought of the trauma of moving and getting use to somewhere new means it’s no longer an option, so we adapt as the challenges appear….

I could easily live in a one bedroom house, all on one level…..the ideal….but I don’t. Sometimes we make bad choices in life without realising it at the time. It’s how you deal with those bad choices that turn it into a success……..or a manageable success…….and how could I move from my view or my village……especially on such a lovely sunny autumn day…

 

 

 

How dementia is causing me chaos with numbers……

I’m sure I’ve said this recently, but numbers and time are becoming difficult to interpret correctly. I don’t trust my answers anymore. Maths was also my strongest subject at school, I’ve never been phased by numbers…..I loved number crunching…….now dementia has served its latest challenge……how on earth does dementia infiltrate our ability like this….cells disappearing, fading, disconnecting?

It’s not even difficult workings out or to look at….I asked Stuart to pick me up at the wrong time  one Saturday…..instead of 12.36 I asked him to pick me up at 13.56…..it might not seem a big deal, but for me…TIME, Numbers, are important things to get right…..it doesn’t make sense to me why I’m getting them wrong…

I was in the shop the other day, I looked at my watch and read the time…..for example, 11.37…….my bus goes at 11.40, yet dementia made me think I had loads of time to make the 5 minute walk. Obviously I saw the bus happily pass by as I was trundling to the bus station and couldn’t work out what had gone wrong…….but time had confused again……numbers had muddled…..

I look at numbers when booking my train tickets (I prefer to book my own as others so often get it wrong and don’t leave me enough change over time or don’t book me a window seat – some are brilliant and those I let book mine) but the concentration and double checking that takes is enormous. Times jump from one line to another. I See one number and write down something else. I often have to go back and start again simply because I’ve got myself in a muddle….

With money, I’ve taken to using the touch card, no numbers to remember. But I often give too much or too little if in cash – that would never have happened before….

It’s happening daily now…before I noticed just the odd occasion ….and these are just the ones I’m noticing…..how many are happening that I don’t notice….

This person, once a maths whizz, now struggling with the simplest of sums…..simplest of working out……simply understanding numbers doesn’t come naturally anymore…..dementia can be very cruel…….

 

 

A Sunday trundle to Edinburgh……..

On Sunday I had a a beautiful trundle to Edinburgh in store for me……the train trundle along the East coast is stunning and I just am in awe every time I’m lucky enough to do this trip…..

I’ve almost found my ‘normal’ again, but the added stress of the clocks going back this weekend did worry me……I spent most of  Saturday morning confined to the house due to the atrocious weather with the thought whittling away at me. I had to get the clocks right as I was travelling Sunday morning 🥴….so….I decided to change the manual ones at 11am and just look at my phone for the rest of the day……I’m sure we must be the only country who still changes the clocks from summer to winter times…..🤔

Anyway, at least I was happy and settled in the knowledge it was done…..

I woke up to a glorious sunshiny day….very confusing as I had it in mind that by putting the clocks back, it would make it darker when the opposite was the case…🙄

I rang my familiar taxi company – the only people I will dial…..and a familiar friendly voice answered, recognising my number….I had remembered to booked my taxi and they checked the time of my train so they were all prepared…..must take some choccie biscuits soon…….

I’d been invited to speak in Edinburgh along with playmate Agnes Houston at a gathering of British and Swedish researchers …to focus on activism, anti racism and Post colonialism and how researchers could help with our activism……..

I could have stayed 2 nights, but thought it best to just do one night away this week as I have 2 nights away at Dementia Congress next week to contend with….

My taxi was due at 09.50, so at 8.30, I’m sat snug in bed having a cuppa, watching the squirrels enjoying their morning routine of flight through the branches of the trees outside my window………. when I thought I’d check the state of the trains…….🙈😱😳😱🤯🤯🤯😱😱😱🙈🙈🙈🙈🤯🤯🤯🤯 all I could see was”

“Cancelled due to Flooding”…………..😱😱😱😱😱……..”Delayed due to Flooding”

I scanned various web sites, and just didn’t know what to do. I had to get to Doncaster for my train and I could see all trains out of Doncaster were cancelled eastwards too 😶

One daughter was at work and I knew the other would be enjoying the extra hour in bed…..but sadly I just needed help…..I txt Gemma and Team Mitchell Immediately responded saying she’d have a look for me and so it went backwards and forwards for a while but then she came up with the genius idea of picking up my Doncaster train in York…….my head just wasn’t capable of thinking up something so simple…..I quickly checked the Sunday buses and Stuart offered to take me to the bus station..so I rang and cancelled my taxi, but I didn’t have to say much as I think they’d checking themselves…

He would have to pick me up in 15 minutes time and here I was still snug in bed 😱….luckily I’d been orgnaised the night before, suitcase packed and ready, I’d already showered, and my clothes had been laid out in order the night before………by the time Stuart arrived I was waiting at the window for him….😇……. I know I’ve said this frequently but I will say it again…….

“Why me ?”

Anyway I’m now sat on the bus trundling to York and typing this to ease my beating heart……and now I’m feeling exhausted rather than calm at the beginning of the journey…..so the Wolds are a welcome sight of calmness………

We’d worked out that by catching this bus, I’d get to York in plenty of time to catch the same train…..and that allowed me to amble from the bus to the station via the Museum gardens to see if autumn had arrived…

The river was very high due to the torrential rain we’d had lately……..

I arrived to find someone with a smiley face who could tell me I’d be fine catching the train here. They recognised the sunflower lanyard I was wearing and asked if I’d like any help to the platform…..and when the train came in, the train staff recognised it and asked if I’d like help finding my seat……..perfect and just how it should be……..

I was on the perfect side, in the perfect seat with a nice clean window, so the East coast line was simply mesmerising and helped to calm me down after the chaotic morning

And it continued all the way to Edinburgh

Once we arrived in Edinburgh I set Google Maps to show me how to get to the hotel….but couldn’t work out which direction to start in so went round in circles for a while 🙄 until it told me I was following the right track……but it was lovely just ambling round with the tourists, equally reliant on their phones for directions…🤣😂….once I got to the Hight Street, I ambled a little way up the hill (in the wrong direction🙄) and watched a man entertaining the childrens with bubbles…..my favourite piccie of the day..

Before spying an information centre…..again, they seem to recognise my lanyard, carried my suitcase back down the steps, before pointing to the way I needed to walk❤️…….and there was my hotel…….

You can find out where to get the lanyards at the link below….as well as Marks and Spencer Food counters, some Sainsbury supermarkets, some rail stations and airports….

https://www.hiddendisabilitiesstore.com/about-us

This blog was going to be about the whole event including journey, but me thinks this is long enough so I’ll type about the actual event on Monday to be published Wednesday!…….

 

 

 

 

Yesterday had a a beautiful trundle to Edinburgh in store for me……the train trundle along the East coast is stunning and I just am in awe every time I’m lucky enough to do this trip…..

 

I’ve almost found my ‘normal’ again, but the added stress of the clocks going back this weekend did worry me……I spent most of  Saturday morning confined to the house due to the atrocious weather with the thought whittling away at me. I had to get the clocks right as I was travelling Sunday morning 🥴….so….I decided to change the manual ones at 11am and just look at my phone for the rest of the day……I’m sure we must be the only country who still changes the clocks from summer to winter times…..🤔

 

Anyway, at least I was happy and settled in the knowledge it was done…..

I woke up to a glorious sunshiny day….very confusing as I had it in mind that by putting the clocks back, it would make it darker when the opposite was the case…🙄

 

I rang my familiar taxi company – the only people I will dial…..and a familiar friendly voice answered, recognising my number….I had remembered to booked my taxi and they checked the time of my train so they were all prepared…..must take some choccie biscuits this morning…….

 

I’d been invited to speak in Edinburgh along with playmate Agnes Houston at a gathering of British and Swedish researchers …to focus on activism, anti racism and Post colonialism and how researchers could help with our activism……..

 

My taxi was due at 09.50, so at 8.30, I’m sat snug in bed having a cuppa, watching the squirrels enjoying their morning routine of flight through the branches of the trees outside my window………. when I thought I’d check the state of the trains…….🙈😱😳😱🤯🤯🤯😱😱😱🙈🙈🙈🙈🤯🤯🤯🤯 all I could see was”

 

“Cancelled due to Flooding”…………..😱😱😱😱😱……..”Delayed due to Flooding”

 

I scanned various web sites, and just didn’t know what to do. I had to get to Doncaster for my train and I could see all trains out of Doncaster were cancelled eastwards too 😶

 

One daughter was at work and I knew the other would be enjoying the extra hour in bed…..but sadly I just needed help…..I txt Gemma and she said she’d have a look for me and so it went backwards and forwards for a while but then she came up with the genius idea of picking up my Doncaster train in York…….my head just wasn’t capable of thinking up something so simple…..I quickly checked the Sunday buses and Stuart offered to take me to the bus station..

 

He would have to pick me up in 15 minutes time and here I was still snug in bed 😱….luckily I’d been orgnaised the night before, suitcase packed and ready, I’d already showered, and my clothes had been laid out in order the night before………by the time Stuart arrived I was waiting at the window for him….😇……. I know I’ve said this frequently but I will say it again…….

“Why me ?”

 

Anyway I’m now sat on the bus trundling to York and typing this to ease my beating heart……and now I’m feeling exhausted rather than calm at the beginning of the journey…..so the Wolds are a welcome sight of calmness………

 

Photo

 

We’d worked out that by catching this bus, I’d get to York in plenty of time to catch the same train…..and that allowed me to amble from the bus to the station via the Museum gardens to see if autumn had arrived…

 

Photo

The river was very high due to the torrential rain we’d had lately……..

 

Photo

 

I arrived to find someone who could tell me I’d be fine catching the train here. They recognised the sunflower lanyard I was wearing and asked if I’d like any help to the platform…..and when the train came in, the train staff recognised it and asked if I’d like help finding my seat……..perfect and just how it should be……..

 

I was on the perfect side, in the perfect seat with a nice clean window, so the East coast line was simply mesmerising and helped to calm me down after the chaotic morning

 

Photo

 

And it continued all the way to Edinburgh

 

Photo

 

Once we arrived in Edinburgh I set Google Maps to show me how to get to the hotel….but couldn’t work out which direction to start in so went round in circles for a while 🙄 until it told me I was following the right track……but it was lovely just ambling round with the tourists, equally reliant on their phones for directions…🤣😂….once I got to the Hight Street, I ambled a little way up the hill (in the wrong direction🙄) and watched a man entertaining the childrens with bubbles…..

 

Photo

 

Before spying an information centre…..again, they seem to recognise my lanyard, carried my suitcase back down the steps, before pointing to the way I needed ❤️…….and there was my hotel…….

 

You can find out where to get the lanyards here….as well as Marks and Spencer Food counters, some rail stations and airports….

 

https://www.hiddendisabilitiesstore.com/about-usThis blog was going to be about the whole event including journey, but me thinks this is long enough and I’ll type about the actual event on Monday to be published Wednesday!…….

 

The difficulty of getting back to normal……

I’ve always noted that 3 days away is the maximum my dementia can cope with; after that living out of a suitcase becomes the norm and being away become the new norm. So to avoid the stress I restrict myself to that 3 nights away max……..However Italy was 4 Nights and 5 days so I knew adjusting to home was going to be a challenge.

I’d already typed in my notes that I was in the lift one day in Italy towards the end and had said, ‘Italy is now my new normal’. I’d fallen into that hole dementia creates, where it erases all past ‘normal’ for me and creates a new one. I felt comfortable, I knew where I was, I knew the routine, I was with people I trusted. But there was that sinking feeling in my stomach of going back home and not recognising my real ‘normal’…..😔…….

The beauty of a ‘normal’ in Italy…

The only thing remotely close to liken it to is changing from a automatic to manual car……that feeling of strangeness of new controls, new ways of driving and then the manual suddenly becoming the new normal…. But instead of it taking a few drives for it to become natural, imagine a week of constant 24 hr driving for it to become normal…………

Sarah drove me home from the station when we arrived back in the UK and it felt familiar but not normal…..I know I needed to enter my house alone. I needed to fight the confusion without anyone there to distracty me.

I walked round and round my house, up and down the familiar stairs……but it didn’t feel ‘normal’. I’d left my normal behind in Italy. The feeling I had was of an old friend that I hadn’t seen for years. I had to get to know them again. I felt uncomfortable……

I took my suitcase upstairs, opened it and wondered where to put everything. It was like discovering my rooms again.  I glanced in the bathroom and worry took hold about how to use the shower……that would wait until the morning…….

I sat on my bed and looked through the book Molly had given me – filled with photos of the places we’d been and walked…..I think……one normal fading, another coming back into view, and I looked up and saw the familiar squirrels chasing each other round the tree tops outside my window…..

It was the smells, the feelings of my house that felt comforting.

I found that if I thought about processes….I got confused….if I just ‘did’….my body remembered…..the shower in the morning….I’d looked at it the night before and couldn’t work it out but in the morning I decided to simply ‘do’; not think about it …and it worked…….

Trying to get my brain to remember seemed impossible, but my body was more capable, thank goodness……

It took me several days to feel snug. I was grateful for the 3 days off I had to make ‘normal’ once more this old friend of mine….and now my house is ‘normal’ again. Is it the same normal as before, who knows, but it’s my normal, new or old.

The other strange happening was when I went to my daughter Gemmas to be fed. I hadn’t been there for food for probably 2 weeks. I felt like I was entering a new strange house. Their familiar smiles and hugs taking away the fear.  The routine had gone and, just as with home, I needed to create a new routine, needed to feel ‘normal’ again. How dreadful for me to feel like that in their house, where I felt so welcome before….dementia has a lot to answer for….

Remember, this is my experience; this is what dementia does to me; others may be different. But that’s why I totally understand people with dementia not wanting to leave the safety of their own environment, how they struggle while on holiday – all makes perfect sense to me…..but I wouldn’t have missed that adventure to Italy for anything. I fought dementia while I was away and I’ll fight it again now I’m home………

The beauty of my village pond ‘normal’ at home…

The varying rates of deterioration…..

I thought I might have written a blog like this before, but if I have I’ve not been able to find it…..it surprised me that I hadn’t as these thought are often with me…

I could have used ‘Progression’ in the title, being the positive person I am, but for me there’s nothing positive in the progression of dementia, hence the use of ‘deterioration’.

The thoughts that here I am typing away, speaking at events, while other are in a very different place and one I wouldn’t want to be. I often think it must annoy the hell out of some carers who are supporting people who bear no relation to me, yet we both have that diagnosis of dementia – it must seem so unfair….

I often feel worn me down with guilt – guilt that I’m surviving in the way I am – but it’s MY way of surviving. I also know I shouldn’t feel guilty,  but that’s just me.

I may not have much of a short term memory but I do remember very high and very low emotional times distinctly. My first ever meeting at the Alzheimers society offices when a carer said to me….

“Yes but you don’t have real dementia”

……always rings loud and clear in my head. That ignorance of the fact that dementia isn’t just that which is experienced by those in the late stages.

A friend of mine has recently gone through a traumatic time and her lovely hubby suddenly deteriorated and turned violent – whether through dementia, medication, or feeling distressed and confused, who knows, but no one seemed to be listening and that’s the shocking thing…no one listening.

We’re probably the same age and the guilt I felt when I found out was so heavy. His family see me blogging and tweeting and it must seem so unfair.

But this shows crystal clear how every dementia is different …..how individuals experience and react in a different way…..how there is no handbook for how are brains are wired……

I’m often questioned and criticised on Twitter. When it’s by professionals, that hurts as they should know better, but I understand when it’s from people having a different experience. I can feel their hurt, their vision of unfairness of me ‘surviving’ while those closest to them are in a different place. I understand their anger, sadness and bitterness – it’s fine, I understand. I have much support on Twitter who look after me but I often wonder how much support they have 😔

In talks I say this:

“We have a complex brain disease, our experiences are individual. Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us. That’s why I can type and other can’t; that’s why they still cook and I can’t; that’s why they still feel hunger and I don’t. I can type words far quicker than I can think and speak them because that part of my brain hasn’t been affected others can’t type but can speak better than me. If I didn’t have these words in front of me I’d be floundering.”

That seems to flash moments of understanding in some peoples eyes…..I can sense light bulb moments being switched on in their heads….

To survive I have to do what I need to do and I’m sorry if tweeting and blogging hurts some people, that was never my intention. But these things help me to survive this cruel disease. I know it helps many but I know it hurts too.

So many of us are criticised at the way we go about our life, but that way is our way. One day our cliff edge will arrive and those who criticise may then accept us……we will ‘fit’ the stereotypical image …but for now, I and I hope all my playmates, will ignore the cruel comments thrown at them.

As for those supporting those whose deterioration is quicker and more cruel, please accept my hug. My thoughts are with you as I would never want my daughters to be in your shoes and will do everything in my power to prevent it….

A Dementia Diaries recording, and Interview about books……

Thought I’d end the week with a simple blog for me 😊….the first is a diary I recorded in the hope that it will be played at an Audiology conference in Wales next week. I’ve brought together my experience of my audiology appointment, the effect it has had, along with an update at the end on sirens……

You can listen to me or read my ramblings here

https://dementiadiaries.org/entry/12691/wendy-reads-her-blog-about-a-very-positive-audiology-appointment

The second link is an article I wrote for the Reading agency some time ago. I might have already shared it so apologies, simply ignore if you’ve already read it. But it appeared again yesterday so I thought I’d include a link to that. At the end of it you can click to see a list of the books I’ve read since dementia.

Reading is such an important part of many people lives that is badly affected when dementia comes along. People think there is no other choice but to give up reading….but as I’m always saying,

“There’s always a way…”

Somebody I used to know

My ability to type sometimes works against me….

Being able to type and write often works against me as it gives people a warped perception of my life…..It seems to make them forget the struggles I have but I’ll keep writing for as long as I can and nice to be asked to write for the Observer for World Alzheimers month…..I can’t help being a glass half full person but often face criticism for it….but their problem not mine…it doesn’t stop it wearing me down though especially if I’m not having a good day.

Maybe in it’s own way, this is a gift from dementia…to enable me to communicate in a way I never could, solely through word of mouth…as I’ve said before, I’m often mesmerised by my fingers typing and astounded at the sentences they produce.

But the inevitable criticism this brings is so hurtful……why can’t people be pleased for fellow human beings who have found a way to outwit the challenges of life and in particular, in my case, dementia? I find criticism and doubt very strange. But that’s the human race for you……

Simply because we CAN creates criticism, doubt and questioning…..if we focused on the CAN’T then we’d be fitting with the sterotypical image and the critics would be happier……🙄 I could write a a long list of what I can’t do but why should I? It would depress me to be constantly reminded of the losses. If professionals concentrated on the ‘CAN’ from the start, our lives would be so much more hopeful from point of being diagnosis.

Professionals often see people in the later stages and so find it difficult to understand people in the early stages. Many misjudge us through lack of knowledge. Families often focus on the late stages, which undoubtedly are difficult, but forget their loved one would have had an early and mid stage. They may not have registered or got a diagnosis until the late stages so find it difficult to understand how I can manage to function…..

Anyway, for those that havn’t seen it and maybe interested, here’s the article I wrote for them…

https://www.theguardian.com/lifeandstyle/2019/sep/14/facing-life-with-dementia-and-discovering-a-positive-path

 

Second Audiology appointment for Hyperacusis……..WOW!

A while ago I finally got an appointment with the Audiology department to discover whether I had Hyperacusis. It turned out that yes, they diagnosed hyperacusis in both ears but I’d been referred to the wrong department. 🙄 ..So I was put on another waiting list for the right department to see if they could help me…..🙈 Well yesterday was that appointment. Luckily I didn’t have to wait another year!

You can see what happened at the last one here if it helps:

https://whichmeamitoday.wordpress.com/2019/07/30/my-hospital-appointment-finally-arrived/

Not sure how much you know about dementia but one of my first senses to be affected was my hearing. I’m not going deaf, it’s just that certain tones of noise physically hurt my ears.
Now audiologists are recognising it’s affecting many people with dementia and diagnosing them with hyperacusis and I suppose I’m here today to find out what help they can offer me.

I was due to travel to Newcastle in the morning ready for a meet up with playmates at another DEEP group for their 10th birthday and their even bigger event on Thursday. But my calendar is chock a for the next few months and I knew it would be hard to rearrange. So I had to dip out of the festivities this afternoon and travel to Newcastle after my appointment ready for the big event on Thursday……

Seem to be in waffle mode today….😂…..anyway back to the appoinment…..because I was getting a taxi at lunchtime I had a different cab driver. We chatted amiably on the way there. She has cancer and also has an interesting story as a cab driver trying to keep her head above water. I’m always saying, everyone has a story………

This appointment was at my local Community Hospital, so again, I didn’t have to go to the dreaded Hull Royal. It’s a light airy waiting area

I just had to hope everything went smoothly to catch my train …..I was the first appointment of the afternoon……so no reason why it shouldn’t be……….🙄

The audiologist came and called me. I instantly liked her for her smiley face and calmness. It was then we began the most AMAZING 2 hour consultation.

Yes, I did say 2 hours……she doesn’t believe in 8 short quick appointments so she has 2 hour appointments to get the patient sorted out in 1 go……..instant triple brownie points…….she couldn’t understand why I wasn’t referred to her in the beginning…….

We immediately clicked because I didn’t just want her to solve the problem and send me on my way, I wanted to understand what was happening, I wanted her to explain so, like a child, kept saying ‘Why?’…..which she liked.

She showed me the pictures of my right and left ear and explained what it meant.

The line is suppose to be straight……🙄

Obviously I wasn’t typing as I needed to listen so am typing this as soon as I’ve left starting in the taxi. I continued on my journey and I had the normal sleep, wake, sleep wake later that night, but little images kept coming through from the audiology appointment so I kept adding to this blog, trying to convert the images into words to capture as much as I could and this is the result ……..

She then went through a series of tests with the hearing aids, explaining everything patiently and even drawing me pictures to take home. She explained the problem on a diagram, explaining how there’s a gate between the ears and the brain and my gate is permanently open. When those without hyperacusis hear loud noise, it’s simply a loud noise, when I hear the same loud noise it’s as though a raging bull is crashing through my head. Their ‘gate’ closes, mine doesn’t.

She explained why ear plugs don’t work effectively – because they don’t ‘close the gate’.

Because I’d already had the hearing tests she didn’t need to do them but instead of just showing me the door, she spent the rest of our time asking about dementia and seemed genuinely interested in hearing the answers. She admitted not understanding the connection with dementia, but wanted to know more. Her daughter is autistic and people with dementia have so much in common with those with autism, including hyperacusis …….

The 2 hours flew by. She wrote me post it notes to help remember different things. Stuck a sticky label on on each box to say which to use and which to save. We decided I’d just wear the right one for now to see how I go as the left one was causing more disturbance. At one point she asked me to close my eyes and point to where her clicking finger noise was coming from – I pointed one direction and I was a few inches out – can’t remember the detail but it made total sense.

One tiny aid that could change my world……fingers crossed….might not be for everyone but for me at the moment it’s WOW…..

She could see I had a jaw problem, which I wrote about some time ago and said how that could well be causing the issue with wearing the left one because of one side being more dominant than the other. She adjusted, tested, readjusted.

It’s not that the loud noise is reduced – it’s still just as noisy, it’s just the intensity of the tone that is dulled which takes away the pain ……

I was amazed when she said, that I’ve probably not heard ‘S’ and T’ in words. Which explains why I can’t follow conversations sometimes. But with the hearing guard set correctly, it made her voice subtly different. I didn’t know what the difference was until she said that. It’s like when the optician puts a better lens in front of your eye and the letters are sharper – her voice was subtly clearer. Apparently not everyone picks up the subtle changes so think there’s no difference so no point in wearing them. But my senses are now so heightened so much, that maybe that’s why I did. AND maybe not every professionals takes the TIME to explain what will change in such a clever way as she did……

What I’ve typed probably sounds a muddle and I wish I could have recorded the whole interview to transcribe as everything made sense at the time. We swapped coping strategies for sensory overload, which would come in handy for her daughter. We spoke of the NHS and generally put the world to rights

She then got her 2nd bucket load of brownie points by saying how if I had any questions at any point then here was her email……😳🤩🤩🤩🤩🤩🤩🤩🤩⭐️⭐️⭐️⭐️⭐️👍👍👍👍👍

We finally finished with a few minutes to spears before my taxi and I thought she would say goodbye at her door, but no…….she walked me through the maize of corridors to the front door and made sure I got to my taxi…….❤️

Maybe I’ll wake up and all this will have been a dream, but if not, in that 2 hours, my faith in the NHS was certainly restored by a professional who knew her stuff but was also willing to listen and learn.

While it takes time to get use to hearing aids for anyone, I wore it straight away and whether it was psychological or not, I didn’t flinch when the train pulled in and the brakes squeaked…….now I just need a siren to test it fully………….I’ve already learnt that it’s a good job I have short hair over my ears!

One happy bunny……..and my mood was as bright as the rays beating down as the Humber as I trundled past on the train to Newcastle……