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.

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.

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

Mind over Matter

It’s mind over matter ………… You can do it

How often have we heard that in our lifetime, from our parents, grandparents, friends etc.

We have a fear or are not sure about something, and that fear escalates in our head until its threefold and you can’t get away from it.

But its mind over matter……

We are all capable of achieving so much in our lives if only some of us didn’t have that small inkling of fear trickling away in our heads and hearts.

When I first got my diagnosis of dementia, my consultant told me that I was now classed as vulnerable because I don’t remember. I felt scared and frightened which when I look back is ridiculous as I have always been independent and when I took stock of what was or is my life. I am still independent. But back then, because vulnerability is a negative statement and I got a bit scared of going out on my own, scared of opening the door to someone in case they knew I had dementia and could take advantage.

I have only been a victim once and that is when I was in an abusive relationship a long time ago, then I made a stand and got rid of him and vowed I would never be a victim again.

Being scared of someone is one thing, being scared of something is another. But at the end of it, its all under the same umbrella of being a victim of your own fear.

The first time I used the bus I was terrified, terrified of missing my stop, sat near the bell and as time went on it became easier. I have always been aware for what or who is about, so some things don’t change. I still sit near the bell because it is easier for me knowing that I can stop the bus when I want to.

It’s quite easy to become a hermit, not see anyone for days. Yes, I have friends but they all have their own lives, as I do. I make myself go out visit friends, go to groups, go walking.

The only time I used to feel vulnerable and that is when I get tired, my speech gets slurred and my gait isn’t very good. But I carry a collapsible walking stick in my handbag and I take that out if needed. And I don’t go out if I am extra tired because my brain and thought processes get a bit sluggish and I don’t feel safe.
We are in charge of our own lives and we need to make a stand. The dementia shouldn’t be making us a victim.

Have a good day ♥

Don’t be a hermit

It’s very easy to become a hermit when you have a long term condition such as dementia but its not healthy as the brain needs stimulation. For me I have to get a happy medium and pace myself as I get tired very quickly but I also like to do things.

I can’t cope with crowds as I am not able to distinguish between the voices, its like a constant rabble in the environment. So I  very rarely go out in the evening anymore with friends as they always end up going to a noisy pub, then I feel isolated as I can’t tell what they are supposed to be saying and then I find myself going into my own little world wishing I was at home. Plus my speech and gait get affected when I get tired and the evening is usually the worse for me as well.

So I try and see friends in the day, or go out in the day which suits me better. I go to a variety of different groups so I can mix, I suppose that is one of the reasons I miss working seeing people. I go to a weekly writing group which is good as it encourages me to hand write stories and such and keeps that skill going. I go to a group called Rosies Moments and its situated at the sports centre and we do a variety of physical and mental activities and I enjoy that. I also go to a group called The SunShiners which consists of a mix of psychologists and people who have dementia and we try and raise positivity about dementia cause most of us are quite young.

I go and give talks to post diagnostic groups, these are people who have just been diagnosed with dementia and tell them not to give up. And also I talk to the public to bring awareness that dementia does affect all ages not just the elderly.

I love to walk so have a walking buddy as sometimes I am not so safe on my own.

Just a matter of pushing and persevering always

Who Am I

This is the post excerpt.

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.