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