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.

Be your Own Fighter

Today which is Thursday, I went to CST in the morning and we did quizzes. You always think that you don’t know anything, but we know a lot more and it always surprises me.

Like What is the largest ocean? What is the capital of Greece? We remembered all the answers to those sort of questions. Amazing what our brain can retain and keep. I just wish I could retain others things apart from general knowledge.

Then this afternoon we went to a Dementia Action Alliance meeting in Hythe, at Age UK. It was mostly talk about getting businesses to become dementia friendly which is really important. I like going to these meetings as getting used to seeing people I know and meeting new people. And although they are all professionals, they listen to what we have to say. And listen to our point of view what is important and means a lot.

Out of the blue I was asked to do a book signing at a dementia Awareness day on 20th May in Hythe, I feel a bit strange that people want to read my book and get to know me, but at the same time I also feel excited and pleased as well. It’s a point that I want to get across that we are all special in our own way.

Life is hard sometimes, but we all have to find our own niche in a way to survive. This is my way of fighting against the alien in my brain 💖

Acceptance is the key

I am usually okay with my dementia. I have accepted it a long time ago, and if people don’t get it then its their problem. But what I don’t like is when someone makes me feel stupid because I just don’t remember. It’s not my fault. Yes, I am young, yes I have got something wrong with my brain, yes I do have dementia.

I had to catch a train this morning. I didn’t have to go too far, two stops and I was there. I get nervous getting trains. The stations are usually very hustle and bustle, too many people. I got my tickets and then couldn’t remember what to do with them and the ticket gate. Do they go through the top hole or the bottom hole? I felt myself getting hot as this meant I would have to ask someone.

Perceptions are a funny thing. We are all human beings and make snap judgements without realising we do it. The man at the gate who worked at the station, did just that. I could see it in his eyes, and the way he smirked when I asked him which way my ticket went. I patiently explained that I had dementia and just couldn’t remember. No big deal. But instead of just telling me and thats that. I took my ticket from me, sighed and did it for me.

I wanted to ask him if he had had training about dementia and dealing with someone with dementia. But was more worried about catching my train. In the UK, the government is very hot about rolling out dementia training for everyone in business.

I just felt frustrated today by the whole experience.

Never give up on dreams

i-am-still-me-bookWell, my book has come out today on Amazon and Authorhouse. I feel so proud of myself. I never, in a millions years, thought I would write a book of poems when I first got diagnosed with dementia. It’s a book of poetry some pertaining to my dementia, but most about life in general or nature. There are about 20 photos in the book as well. I chose the cover because I love nature and trees, and the trees losing their leaves remind me of my brain. I want to tell people never to give up, on anything 💖

Don’t Give Up

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We only have one life, and our life is short compared to the universe, so we have to make the best of it. I strive to do the best I can by always thinking on the positive over the negative no matter what.

When you have a condition, you have to learn to adapt and believe that you can get through it. Thought is a powerful tool, and if you believe it enough , you will. I believe that I will have at least 20 – 30 years ahead of me before my dementia takes hold of me, and I firmly believe that.

But you must NEVER GIVE UP on your life. The minute you do, then the condition takes over and you will lose. Why should that win over your life which is so precious.

When I first had trouble with writing, and remembering and finally got my diagnosis, I couldn’t use a computer very well. I used to in the old days but over time my coordination wasn’t very good. I couldn’t use the keyboard and keep looking at the screen, all the words kept jumbling up. But because I started to write poetry and it was easier to put it on the computer than handwriting it, I persevered and now can use a keyboard as fast as I used to be able to. You just need to push yourself and believe you can do it.

I don’t want to give up on skills that I used to have so I make myself do things, no matter how hard it is sometimes.

I have started doing on line courses which are free because I enjoy learning new stuff. Always did when I was a nurse and I know i can’t retain information now and I can’t remember a lot of what is said to me but at the time I like to learn something new and who knows that it might help my brain adapt, and I might remember bits of it. I don’t believe in the word can’t.

Sometimes my speech is affected especially when I get tired, its like I have no coordination over my tongue and I can’t always remember the words but I like to persevere to get the words out if I can. I hear of people who give up talking because its exhausting trying to speak. I don’t want to do that so I will try as much as I can. My friends always ask me if I want them to help say the word.

Last year I attempted to walk 44km for charity. I managed to walk 26 km in the end as I was poorly on the day but it was still an achievement for me.

We all need to FIGHT FOR WHAT WE BELIEVE IN.

And we all have bad days. Everyone does. So if you do something that isn’t quite right, or you can’t remember something, or its just a bad day. Don’t give up at the first hurdle and think your condition is getting worse, because there is always tomorrow.

Power

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POWER

The mind is a powerful tool
People have the power
But sometimes they are a fool
Watching time by the hour

Will it or won’t it?
I can hear their minds ticking
Then people want to quit
Cause it beats sticking

To whatever it is they are fighting
But in life, you have to remain positive
As life can be exciting
Even if your mind is a little less cognitive

So what if you do have dementia
Don’t let it stop you from living
You may have started to have dyslexia
But life is always about giving

We all have a power
It’s just how we use it
We can be beautiful like a flower
Even if our brain isn’t fit

It has to be believed
That we can fight anything
That life can be achieved
You can even go snorkeling

Just believe and have faith
That joy can be seen
Some people show their wraith
Whilst others make a scene

But it’s because they don’t understand
That we all have a choice
That life can be grand
And we all have a voice

Copywrite Tracey Shorthouse 2016

Never Give Up

My friend Annie is my walking buddy. Although I do walk alone, just recently its nicer to have a partner. So we go for weekly walks if time allows. We both like woods and fields and round here we are surrounded so lucky.

We went for a walk a couple of weeks ago and saw all these wonderful trees. Although it was quite icy to begin with, it soon melted. We walked for 5 and a half miles, so pleased. It was nice to get fresh air in my lungs. I do use a walking pole as can get a little unsteady on my pins at times.

Something happened on that walk that bemused me and I’m sure when I share it, you will think, what?!?! Lol

We went across this field and came to a stile which we had to climb over. But I couldn’t remember how to do it. I got one leg over, but i couldn’t remember what to do with the other leg!!!

It’s ridiculous, isn’t it? I looked at Annie and told her that I didn’t know how to go over. So in the end, I just sat on the fence as if i was on a horse, and put the leg straight in front off me and put it over that way with the other leg. I remember that happening a couple of years ago when I was out with my nan and she had to patiently tell me how to get over and where to put my feet etc.

I find the brain complex when I want to do things that I’ve done in the past, but can’t figure out how to. It’s frustrating to be honest. There are always ways to do something, it might not be the right way what others may do, but i dont care now. If it works for me in a haphazard way, so be it.

Sometimes i hear, “” that’s a strange way of doing things” or “well i wouldn’t do it that way” but our brain works in different ways, especially when we have dementia or another condition. We adapt the best way we can and work with what we have.

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.