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……

Wish List…….revisited…..

After yesterdays’s contentious blog, I thought a reblog of this one fitted in quite nicely. There’s a fine line with dementia, between being the person I want to be, as I am now, and  going over the edge into someone I wouldn’t want to be – whether happy or not…..this blog was written for the eventuality of being unaware that I’ve fallen over that cliff edge…….not somewhere I want to be but with this cruel dementia you just never know when it will take hold and win……..

I found a list written by a young girl on the thepurpleelephant.org web site. She wrote her top 16 messages to her family. She wanted to make sure that her family hang up her wish list wherever she ended up living should she develop dementia…..

I’ve redone it and  narrowed it down to my top ten…………

•  I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it. It’s the world I’m in, you need to join me.

• I don’t want to be treated like a child. Talk to me like the adult that I am. Don’t surround me with fake images of the seaside – take me there to feel the sea air on my face.

• I still want to enjoy the things that I’ve always enjoyed. Help me find a way to do all these things.

• If  I become agitated, take the time to figure out what is bothering me.

• Treat me the way that you would want to be treated.

• Don’t talk about me as if I’m not in the room.

• Don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live but please still visit me and make sure they have WiFi to FaceTime me!

• Don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.

• Know that I still like receiving hugs or handshakes.

• Remember that I am still the person you know and love.

I’d be quite happy to have this list on my wall…….

 

Living alone with dementia…….

This is a blog I’d posted many moons ago. I randomly did a search for one appropriate to repost and this popped up……still very relevant today…..

…………………………………………….

Someone recently said to me that they felt sorry for people who live alone with dementia…I responded by saying that I live alone. ‘Yes, but you’re Wendy’……….😳 They weren’t being horrible or anything. They just didn’t see that I might have any problems.

So what do I have and what do I do that made them think I’m different from others who live alone with dementia?

I know some people don’t choose to live alone – they have no choice in the matter and to have dementia in tow must present serious challenges. I choose to live alone as I need everything to be where I put it and I don’t want to have the guilt of upsetting others or being disabled by others.

I know I’m lucky. I’m confident, adaptable and don’t fear dementia. So what if others who live alone were given the support and knowledge of how to make things easier to live alone? Or how to make social contacts so they wouldn’t be alone?

Even though I live alone I surround myself with people who believe ‘I can’ and ignore those who concentrate on what I ‘can’t do’. Maybe that’s what we need to give others who live alone – support and help to believe in themselves?

Remember – I’d never tweeted, I’d never blogged, I’d never facebooked, I’d never FaceTimed, I’d never used an ipad before dementia…..
But I had support, encouragement and most of all patience of those around me to give it a go. To learn something new because it would help make things easier. People, especially my daughters, who thought I could do new things and didn’t abandon me to dementia. I hope we all look after one another as they need support as much as I do.

Maybe that’s the difference. I’m able to live alone with dementia in tow because those around me don’t let dementia dominate. I don’t let dementia win. But without people around me having the same attitude and confidence in me, supporting yet not ‘protecting’ me, I too would find it difficult to live alone with dementia

So for all those people out there alone and have no one to encourage them and support them to learn new skills, and adapt, maybe those around them should take a long hard look at themselves and believe in what might be possible.

For many this might not be loved ones, they might not have family around, but healthcare professionals and communities themselves could help more by being positive and directing people to new things and supporting them to adapt. It won’t solve all the problems but at least it’s a start.

I know everyone isn’t as lucky as me. I have 2 amazing daughters who let me get on and encourage me to try new things and find ways to adapt. For others, it might only take 1 person to offer time and patience to show someone less fortunate, but equally capable, something new, something that would make life easier. A single change could make living alone with dementia easier. Maybe they would feel less isolated and abandoned.

We all know we won’t get better but why focus on something over which we have no control? Instead focus on what you can do today to make today easier.

No one should have to cope alone with dementia. It doesn’t always have to be a human that makes you feel good….

I’m sure I used to be able to fit into this box….😻😻🎃

Two events – one aim – to show what we CAN do……

Today I’m promoting two up and coming happenings. One in York and the other in Sheffield – sorry those further afield !

I’ll put them order of date……the first being Sheffield….

David Reid, senior teacher in the school of nursing and midwifery at Sheffield University, has for the last 11th years run the South Yorkshire Dementia Creative Arts Exhibition.

This year on Tuesday the 2nd July, me and many of my playmates will be showing what we CAN do as part of a Mentioning Dementia day……

I’ll be reading a piece from my book, some will be reading poetry and me and playmates Howard Gordon and Jacqui Bingham will be doing a Dementia Diaries Live session where we’ll read diary entries from other playmates.

It should be a wonderful day and is FREE to attend. I’d love to meet anyone in that area.

To register and get more detail click on the link below

https://www.eventbrite.com/e/mentioning-dementia-a-national-spoken-word-event-tickets-62679707693

The second exciting news, if that Minds and Voices will be running our second course –
A Good Life with Dementia – designed and delivered by me and my playmates with the support of Damián Murphy.

We had asked the local memory clinic to refer people but once again, they’ve let us down by simply giving out a telephone number and expecting people to ring Damian……😔…..if I’d just been diagnosed, I would want help and direction and not be expected to ring a total stranger. I’d want to have them telling me it might help and give it a go. Imagine how overwhelmed you feel anyway. You’re looking to the so called experts to show you what might be useful……Such a shame……

So here we are again having to try and recruit people ourselves….

Soooo if you live within the city of York we would welcome you and provide transport if needed. If you live further out and are interested, we would still welcome you but you would need to provide your own transport. Any age.

Supporters are welcome to come, in the knowledge that we do focus on people with a diagnosis.

The course is for 6 weeks…….with courses, my first question is always, so what happens on week 7 or the week after the course has finished…..and we have the advantage of offering people the opportunity to join Minds and Voices, should they wish, therefore providing some continuity of support after the course.

Week 1 starts on Tuesday 30th July. During the 6 weeks we include, hearing your story and answering any questions, the facts about dementia, Adapting and Accepting, pros and cons of living alone and in a couple, driving, speech, other people’s attitudes, where to get help including entitlements and welfare rights.

All the practical and emotional support that’s often missing plus any other questions you may have!

So if you are or know anyone who might benefit from meeting with us for 6 weeks please put them in touch. It’s not really a ‘just turn up on the day’ as Damian would like the chance to meet you and explain about our course first.

You can contact me through my blog, and I’ll send on your details to Damian, or you can contact Damian direct by email on

dementiafriendly@outlook.com

Or by phone on

07927 405854 (hope I’ve got that right, let me know and find there’s a problem….)

We’d really love to see people there……😊

Food……now the fuel of life……

Last Wednesday when I was at the care home in Fleet, Francis was so adamant that I needed to eat. If left to my own devices, I’m happy just to eat in the evening. Food doesn’t worry me anymore, I can take it or leave it. However, in the café, food kept being produced and put in front of me. Snacky crisps, sandwiches and all manner of cakes as it was someone’s birthday. I realised very quickly that I was taking a bite of everything that was put in front of me. I didn’t want it or need it, but because it was there I was picking at it.

One of the staff said how it was difficult to know what to do in the other extreme – when people have forgotten they’ve eaten and ask for another meal. I will always eat if something is put in front of me. If it isn’t I simply go without and don’t miss it. I wonder if others, that they spoke about, eat because it’s a nice activity and something they can do for themselves? Eating provides an activity. Maybe if some other ‘doing’ was provided when asking for a second meal, the ‘doing’ would replace the eating. Just a thought.

It never surprises me when I see people with dementia just staring at their food or simply leaving it untouched. Eating some food can be a very complex activity. If it’s on the wrong coloured plate or they simply have forgotten the process of eating. I much prefer to eat from a bowl now rather than a plate – it just seems easier.

That’s why I eat in the evening – it’s become that regular activity. I know that I get 2 or 3 good healthy meals a week because Stuart cooks for me. He adores cooking which in turn makes me enjoy eating it because I’ve seen the pleasure it provides him by cooking it.

Once upon a time I would trundle round the supermarket and get far more than I needed simply because I couldn’t decide. Now I wonder round looking for inspiration, trying to find something that will make me think, ‘mmmm I fancy eating that’ but it rarely happens now. I’ll pick something up because it’s easy to eat or easy to prepare.

Since falling out with milk, my stand by of porridge and bananas is no longer an option so my new independent meal is a wrap…..tried it for the first time yesterday……got in a right pickle making it and an even bigger mess eating it……more practice needed……🙄

I used to adore eating and cooking food……..not now……Food is simply fuel….

How my relationship with food has changed……..

I used to cook from fresh every day, even though I lived alone. I don’t remember ever having a relationship with convenience food, well maybe when the girls were little, when their favourite meal appeared to be waffles and fish fingers….😂🙄

Cooking and baking has always been a wonderful pastime, a delight and stress buster. I’d bake my own bread, concoct my own recipes and sit entranced by the latest food crazed programmes. My kitchen worktop, in my house back in York was lined with all manner of cookery books and I’d happily sit and wander through them.

Then dementia came into my life and like a jealous lover, soon eradicated that joy. I fought against it’s will for a time, but soon it won the battle, got what it wanted and now the books have gone, the cupboards no longer strain under the weight of baking products and exotic ingredients. There’s now plenty of cupboard space for nothing in particular.
The microwave now my best friend and occasional use of the oven if I can be bothered.

Food is now simply fuel. The joy of creation a distant memory. I don’t feel hunger as I use to. I’ll wander round the supermarket looking for something to take my fancy. Where once the trolley would be stacked with irresistable goodies, now is often left abandoned as I leave empty handed.

Do I worry? Do I miss cooking? Miss the smell of my creative kitchen? No of course not. If food is simply fuel, then I eat in the evening to make sure I’ve eaten and that’s my routine. If you lose interest in something it doesn’t matter any more.
Gemma’s wonderful partner, Stuart, adores cooking and feeds me twice a week with his culinary magic and I enjoy seeing him delighting in the art I once loved. I talk about him in the podcast below.

So you see I’m never going to starve. Pick up food is simple to eat so if I’m home I’ll have a tea cake or cheese scone with butter to pick on in the afternoon. But it doesn’t make me feel faint or lack energy if I go the whole day without eating. If I’m at an event, there’s often food there to pick on and people have often been so kind as to make sure there’s a tuna sandwich for me, so I’ll eat that.

But I now eat for a different reason. Food is simply fuel. Occasionally I’ll feel that once familiar emptiness and think, ‘Ooo am I hungry?’ But then have a cuppa tea which eradicates that feeling so maybe I’m just thirsty.

So that immediately brought to mind my love of a cuppa tea………well that still thankfully has to be in abundance………when the time comes to let me go, refuse me those antibiotics, and just set up a drip with Yorkshire tea and I’ll die a happy bunny………

And so to the reason for the blog. The ‘Delicious’ Food magazine have a monthly podcast and I feature in the May edition.

Gilly Smith interviewed me at Bloomsburys, can’t remember when but in the podcast she described my book as, “Astonishing story of attitude’ 😂 I like that. You can listen to it here. I’m about half way through but the whole 30 mins is an easy listen.

https://play.acast.com/s/deliciousdish/themaypodcast-thebeyondmeatburger-thegoodliferevisitedinasussexb-bandhowtoeatwithaltzheimers

To read more about how my love of food has changed, I was asked to write a piece on food for the Observer Food Monthly will be running on June 16th……..

How my reading habits have changed…..

A while ago I was asked to write an article for the Reading Agency about how my reading habits had changed. Amazingly they’ve taken me back in time to a wonderful place and as I’m always saying….”There’s always a way”

………Well recently they published the article and you can find it here:

https://readingfriends.org.uk/someone-i-used-to-know/