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Who Am I

This is the post excerpt.

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My name is Tracey and when I was 45 I was diagnosed with early onset of Alzheimer’s Disease and Posterior Cortical Atrophy which is a different kind of dementia. I was fighting for nearly two years to get anyone to believe that there was anything wrong with me, so it was a relief to get a diagnosis.

I used to be a qualified nurse, I first worked on a busy ward in a hospital before going out into the community where I remained until I retired last May, 2016. I knew something was wrong, when I went to see a patient, before my fight of getting diagnosed, and wrote gobbledygook in his notes and didn’t realise and a colleague told me. And other things were starting to happen, like getting lost on the way to work, or losing the car.

Soon after my diagnosis, I stopped driving as it became too scary for me. The PCA part of my dementia tends to hide things, its affects my spacial awareness and perception of things. The buses where I live as very frequent so I am lucky.

The dementia’s give me a lot of problems which I work through and they don’t stop me from doing something I just adapt.

I don’t get hungry or thirsty, so I have breakfast with my tablets and I eat again about 18.00 0r 19.00 hours. I have an alarm in my kitchen which I set every hour and a half to remind me to drink. It’s in the kitchen because I then have to go and switch it off and then drink.

At times I have had to relearn old skills which I have lost, and I have done this by perseverance and not wanting to give up. Using the computer and cooking are two skills I have had to relearn.

I call the dementia my alien. The black entity that strives to get hold of my brain. Well its not getting it without a fight. I am worth so much more.

I write a blog because I forget so easily. So its my way of keeping a memory and hopefully it might helps others. I write poetry as well so that will be shared and also take lots of photos. Life is precious and we need to fight to keep in it. I try and keep positive because its heaps better than being negative. Plus I always see the dementia as being that negative energy and light always overpowers darkness.

By fighting each day, I will prevail.

I have four rules of thumb : –

  1. Adapt – I can’t always do the things I used to be able to, so I adapt
  2. Try and not stress about things I can’t control
  3. If a bad day occurs and we all have them, then there is always tomorrow
  4. Always, always try to keep a sense of humour, which is the most important.

 

Acceptance

On Thursday i had two occupational therapists come and see me in view of having some equipment in the house to help keep me safe. Annemarie who i see monthly and she is my voice of reason. She is the voice in my head if i know i do too much 😊 And Angela. Angela is someone i used to work with when i was a nurse on the intermediate care team. But there is no other person i trust more, in fact i would trust all i worked with to look after me.

It took a lots of guts last year to get a walking stick that i use when i get wobbly. Pride got in the way a bit and i was worried how people might perceive me. I know!!! But when you are young and used to being independent, its hard. But i bit the bullet and now i have a collapsible walking stick in my handbag, like a fashion icon!! Lol

The same regarding having equipment in my house. The thought upsets me greatly, and i having been shedding a few tears of late. I feel like i am 47 going on 80. Which i know is ridiculous but its something i just have to get my head around, accept and know I am safe and still independent. Once they are fixed and i have used them a few times , like my stick i wont notice them.

My stairs are very steep so when i am tired its hard work climbing them so i am having a secondary rail put on the wall so i will have two banisters. Which will probably be helpful.

Climbing into my bath / shower is hard with perception and balance so i am getting rails on the wall and a bath board which should help hugely.

I am confiding these things to you so that if you need equipment, get it. How does the saying go Pride comes before a fall? I would rather be safe then end up in hospital because my pride got the better of me 💖

My Alien

Dementia is a funny thing. One can’t see it or feel it. And you really wouldn’t know you had it until something happens out of the ordinary and then you know.

I call my dementia the alien sometimes or the black entity other times. You know the horror film when you don’t want to go into the cellar in case the black mass gets you, well that is how I see my dementia.

Most times I forget I have it, and then most times when I feel tired I know but ignore it. I feel its waiting to say, ‘Im Here’ horrid thing.

Changes that happen are subtle as if my alien does things that I wouldn’t realise but I know. I know my body and mind.

I have eaten apples every day for 20 years, loved them. Gala Apples are my favourite as they are crisp and juicy. Now I don’t like them – strange I know. I don’t like biting into them, the texture against my mouth, the crunch I don’t like. I buy them out of habit and then they go off. If I cut them into wedges and into smaller amounts then that is fine.

There is a poem called ‘Apples’ in the book ‘To Forget With Grace’ by Jacqui Peedell and Jo Davies. Jacqui lives very well with her dementia and wrote this book of poems which I bought from her when we met at the Alzheimer’s Show. I understand where she is coming from, when I read her poems. Her book is available on Amazon on 20th June.

The same with carrots. I used to love raw carrots but against don’t like them now and if I cook them they have to be really cooked whereas in the old days I used to like a bit of crunch to them cooked.

I don’t like the smell of raw meat now. Last time I did a chicken casserole, I felt sick preparing it. Never had that problem before. After I cooked it, I threw most of it away as the smell was still up my nose.

Colours are getting more and more confusing. If I am playing a game against the computer where you shoot the balloons down, colours change in front of my eyes and its frustrating to say the least. I have just found out that I can change the colour of the keyboard on my phone. So it’s now blue with white letters and I can see it better.

I have also taken the predictive text off the phone and I am less stressed now, which is strange cause I used to love the predictive text before the alien took over my brain. Words get muddly as it is without adding to it. I get frustrated when the grammer police get on my case whether a word is spelt correctly, or the right or wrong word is used in the right category. Does it matter?

The English language is complex as it is. Which, witch, bare, bear, i before e except after c is the only thing I remember. Those versus they. I always think its a bit like the French language, la versus le, is something feminine over masculine. What makes a book le livre masculine. Yet La Chemise – feminine. Language is complex indeed.

No wonder we have trouble with our speech and language. When we have dementia.

Yet, despite all the weirdness my alien tries to fool me with I love my life. So I obviously am still beating that little horror. Every day is a blessing

Pilot Decision Making Tool for GP’s (UK)

I got word recently that there is a pilot decision making tool for GP’s in the UK going out this year. This is to aid Dr’s to make a diagnosis in dementia in younger people. I have looked at a copy of the tool in question and its amazing.

I think back to how I got diagnosed and what a fight I had to get anyone to believe that there was anything wrong because of my age at that time. 45 …… Stress and depression were bantered about and although I was under stress with my job I knew my signs and symptoms weren’t caused by stress.

This tool is a long time in coming and I am glad its here to help new patients my age. Hopefully it will help Dr’s not put everything in a box as well.

At the moment if I have to see my Dr and I do try not to, the first thing they say is ” How do you know what you have is nothing to do with your dementia?” As if to say, now when you have anything wrong its the dementia’s fault and we can’t help you!!!

This response is very frustrating and it takes all my effort not to walk out and never go back for this is what I really want to do. Last time I went, they blamed the symptoms of my menopause on the dementia!!! What!! Lol!! Then they took note when I told them what my symptoms were.

I have to say on a positive note that the nurses and nurse practitioner are fantastic and I usually see Sue over the Dr’s any day. Sue always asks how I am coping with my dementia after i have spoken to her about whatever I have gone there for which shows she cares.

Hopefully this new tool will help my GP’s as well.

(The link to the tool is here https://www.youngdementiauk.org/gp-decision-making-tool

There is a feedback survey too on the webpage & all comments would be gratefully appreciated so the final version of the tool can be made the best it possibly can be)

Arts and Dementia Conference

On the 9th March 2017 I went to London with a fellow friend Dianne and our lovely student Kristina (I usually call her Katrina so I hope I got it right) to the 1st International Arts and Dementia Research Conference.

I was dreading going 1) because it was going to be a really long day and I get tired quickly 2) the trains being as busy as there are that time of morning and 3) people being as busy as they are in London. Lol!!

I got up at 5.45am and had already booked a taxi the night before to take me down to the station as no buses run that early. Managed to get seats on the way to London, once there we went on the Tube which I hate. Not because I have dementia, I would have hated it before as well. All those people squashed together like sardines, we really couldn’t get on the first two trains and then Kristina grabbed my hand and got me onto the third train, standing, squashed and bless she was really good. Kept asking if I was okay. If she hadn’t had pulled me on, I would still be waiting I think!!!! Lol!!

We got to Portland Place on time just a little before 9am, so that was good as I hate being late for anything. There was coffee, tea, water and juice, with biscuits on arrival and we had to register and was given a name badge. Then we were told that we had to choose a room to sit and then stay in that room all day, so we weren’t too happy about that. We got sent a programme, beforehand, of different talks that were happening and we marked down what ones that interested us and they were all in different rooms. So, we thought that was bad planning on their part for not making it clearer. However, in the introduction speech we were told we could go to whatever talks we wanted to, space allowing, so that made things easier.

Portland Place dates back to 1775 and is a beautiful historic building. I wanted to take some pictures of the ceilings to show you but it was really hard to do it discreetly. There were large chandeliers hanging from the ceilings, showing beautiful colours when the sun shone on them. There were five different rooms all with different décor and just stunning. We went into 4 of them, Heggie, Sainsbury, Harben and Founders.

We started off in the Sainsbury Room where we were welcomed, followed by a talk by Anne Basting, an American professor from Wisconsin – Milwaukee. And I liked her talk very much. And she was my favourite speaker of all I think. Probably because she proactive in bringing positivity about dementia. She has written a few books ‘Forget Memory: Creating Better Lives for People with Dementia’ is one.

Anne has also completed numerous projects including The Penelope Project which focuses on Homers Odyssey and was based at Luther Manor Retirement Community. There are about 700 residents and they all got involved somehow and when it suited them, which is nice cause they had the choice. http://anne-basting.com/creative-work/

This is Anne’s site if anyone wants to look up any more of her projects. All of her projects encouraged interaction from others living with dementia and I like that a lot. The thing I remember more about what she said was “Your Story is my story” and “beautiful questions” meaning all questions which are asked to others which are open are beautiful cause they encourage a person to open up about themselves whether it’s a little or lot. All her projects have positive impact on others.

We had a coffee break and then we went to the Heggie Room. The talks were 1) about ‘play’ and people living with dementia, about them living in the here and now, living in the moment. 2) Remembrance Dance, something that is happening that encourages good quality of life for people living in nursing homes with dementia by the power of dance. They said that in Denmark, all children learn dancing at an early age and these dance skills can be recognised even if nothing else is. The body remembers what the mind has forgotten. Then someone from the Aged Exchange spoke about improving the wellbeing of people with dementia. All easy to follow and understand and I felt at ease then. I wrote simple notes to remind me of different things. The speakers were from USA, Netherlands, Denmark and UK.

Then we had lunch which was provided. A choice between hot and cold and there were gluten free choices as well. Plenty of fluids were provided as it was a beautiful day outside and hot inside.

In the afternoon, we split up and went to different talks but it got more complex as it was more research based stuff in the afternoon. Someone told me to let it wash over me if I didn’t understand it which helped me a lot. The only talk I was interested in was Creative stimulation: Living with dementia and I was a little bit disappointed as again the ethos was concentrating on the elderly population living with dementia. The whole day was centred round it to be quite honest and us, young ones living with dementia got forgotten.

We had one more talk to go to and then we ended on a hour long discussion which was a bit complex and Dianne and I looked at each other numerous times and we got lost. But my ears picked up something that was said about carers and nursing, then I joined in the conversation and it felt fine.

We had an evaluation form to fill out. It’s a shame only Dianne and I went as those living with dementia. The conference was open to all. It was quite nice to network and we got chatting to someone who found it interesting that we did talks to post diagnostic groups. My bugbear was that it centred on the elderly over young. I have also suggested that it would be nice to have a speaker who lives with dementia who is involved in something creative. Next time Dianne and I said we would stay in London and go to the second day as well as that looked interesting.

All in all, it was a really good and interesting day and I was pleased I went in the end. I got home at 20.40 in the end. Today is a restful day.

New Research Project

Yesterday, a few of us went to a meeting at our local health centre. We met a young researcher from Oxford who was collating research on how to make travelling on public transport better for everyone, especially those living with dementia.

It was interesting cause she listened to our experiences when we use buses or trains.

Like I always have to sit near a bell on the bus, but then so does a few of us. Or how complex it is catching a train, especially going to London where it’s so busy and manic. She was interested in what sort of technology we use to help us in getting through life. For me, i use Google Maps a lot, my calendar on my phone is my lifeline and I use Google a lot, How do I……… is typed a lot as have no clue otherwise.

This researcher and others are trying to devise a device or app that will help us use public transport in the future. So it’s a case of watching this space. We said we didn’t mind trialing it when it did come out.

I like anything that is positive and this is hugely positive 💖

Talk about Living Well with Dementia

Yesterday, I did my first talk of the year. I always get nervous beforehand and I always feel relieved when it’s over and I have no mishaps. I never know how the talk will go and what I talk about until I do it as I like to change it about a bit.

The microphone was a bit hit and miss as usual!! 😂 😂 I have yet to give a talk where the microphone works really well. But it’s all experience!!! 😜

I just advise people that they can live well with dementia. Never to give up, Adapt and always retain a sense of humour. I don’t suffer with dementia, I live with it. It’s a matter of perception.

I recited one of my poems and sold a few of my books. I am in awe that people want to read and buy my books, and that people want me to sign them which I find strange but nice as well.

A Sense of Humour Helps

I love seeing my friends socially but it makes me tired talking and trying to keep up what is being said. We always forget that our brain is used for everything and people don’t really understand that. Every day last week I caught up with friends who I haven’t seen for ages so thats a lot of chatter. By Saturday, I was starting to feel tired.

I went out with Annie for our weekly walk. I never think walking is tiring but it really is. I push myself to do this exercise because I feel its really important but it was hard work on Saturday. We walked the hills of Hawkinge which is a feat in itself, up and down. Sometimes when I walk its like walking through treacle, my legs don’t want to and I again push myself.

We climbed to the top of Sugar Loaf Hill, where at Easter, three crosses are carried by three men and placed there every year, then taken down a week later. And then we went down the steep slope to the bottom. I am always in awe of Annie who is so confident and there is me gingerly going down as scared of falling. She had the good idea of walking in a zig zag way downwards which worked.

We got to the bottom of the hill and there were lots of trees and branches that had been cut and were starting to grow in different ways. Nature at its best. Blossom was seen starting to grow on some of the trees, an early sign of Spring.

As we walked towards the next hill we saw a spring which the pilgrims used to drink from in years gone by. The water was so clear, however it was like a quagmire on the embankments and we looked at each other cause we had to cross it somehow. So we went to the shortest point and there was a log across this stream. Annie went first and it was fine. Now me and my balance has never been much cop. In my minds eye, I am like a ballerina!!! But in reality I am a klutz !!! Lol!!!! 😂 😂 😂

I start off at the beginning and can’t do it and I thought sod it, I’ll go into the mud and walk through it. I got stuck into the mud, fell forward, it was like a comedy sketch, both Annie and I were both laughing cause we didn’t know how I was going to get out of it. It was like a mud bath without the luxury !!!! Lol 😂😂😂

I moved one of my feet with great trouble and then the other and then lost my boot in the quagmire and stood on the edge of the other side with mud down one leg and a muddy sock on the other. Both of us were looking at this boot wondering how to get it out. Luckily its wasn’t like quicksand so it wasn’t disappearing but it was stuck solid as Annie tried to no avail to get it out. In the end, she used my walking pole to dislodge it and finally I got my boot covered inside and out with mud.

Nothing I could do about it. I had to put it on and carry on walking. The funny thing was that we saw a wooden walkway a little way along over the stream that we didn’t know was there!!!! Lol 😂😂😂I always carry water so we rinsed our hands. And laughed. We walked up Castle hill so called before there used to be a Norman castle in the old days perched on top. and then we walked back to my house via the crematorium. We walked 5 and a half miles so did good. Of course I got funny looks from other walkers cause of being covered in mud. At least our walks are not boring.

In the evening, I had friends round for a takeaway and catch up but they didn’t stay long as felt out of it some of the time. The voices were echo y in my head as i couldn’t quite grasp or make sense of what they were doing or saying sometimes.

The photos of my shoe, the spring and the alternate pathway are borrowed from Annie, but the photo of the early blossom and Sugar Loaf Hill are mine