April 2019 – Handbagwarrior; verbal ramblings

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Last week I attended a session to become a Dementia Friends Champion. I guess there were around 15 of us from all walks of life and jobs but I was the only person living with Dementia. Obviously when I go places it is not something I announce to the world and his wife, why would I?

Why was I there? I’ve already accompanied others when they have delivered Dementia Friends Sessions to both adults and children in local schools as part of working towards becoming a Dementia Friendly Community, with the steering group Dementia Friendly Seaham. So it seemed natural that I could start delivering them myself at some point. Becoming a Dementia Champion you start by committing to delivering one session in the first four months, and that can be to just one person (family and friends) or to a group of people (etc workplace).

Getting back to the information day. I am not sure how I felt at first, listening to the facilitator talk about ‘people living with dementia‘, as it felt like he wasn’t talking about me. It is a very strange place to be, listening and ‘learning’ to read a script educating others about dementia. I somehow felt detached emotionally from the whole event, even though inside I kept thinking “this is about me”.

The script is necessary because it is about facts, and gives standard information that is not personal but really informative. Every dementia friends session given around the country will be the same. This is how information works best and Dementia Friends Sessions are so, so important to educate as many people as possible about how, individually, they can make a difference. It is as simple as being aware of how a person living with dementia can see the world around them. Example – Black door mats = holes in the floor, or difficulty counting money at a supermarket checkout slowing everyone up. Those are just a couple of small examples. For me the real bonus is about people just learning to have a bit of understanding about the many difficulties of living with dementia.

So, here I am in this Dementia Champion Session feeling somewhat disconnected from everyone around me, obviously this was just a person introspection of mine and not in anyway about the people I was with. I think that sometimes I just wish I was one of those people learning about dementia and not living it.

Anyway, it was a good day and I came away with the confidence that I could do this, I also caught up with people I had met before with was lovely.

I am looking forward to delivering my first Dementia Friends Session following the script, and possibly at the end when I finally ask the people attending ‘what someone who is living with dementia looks like?’ I will say “me“.

Sometimes, on a good day, I find it hard to believe I have Alzheimer’s. I question whether I have ‘dementia’ as a symptom.

Of course it doesn’t last long the wonder and the doubt, because I looked at how confused I get at certain times, and the lack of memory intake of recent information amongst other things.

What I am understanding is how I can never be seen as totally ‘normal’ and I then think how can anyone want to be friends with me knowing that I am slightly broken? I think I have always been a person who spends a lot of time alone, feels comfortable with my own company. Sometimes that can be a sort of a silent world, when I have no radio, tv or music on. The silence feels okay and I don’t feel lonely, but I do worry that it is my way of retreating from a world that I have always felt not quite at home in. That is of course, the dyspraxic part of me speaking, but it has an impact on how my Alzheimer’s is.

When my ability to be coherent and indeed, sensible in my thoughts, ideas and speech shines it is difficult to see any brain disease. But, I know it’s there. I know my vision is currently a problem. Patterns are beginning to dazzle, confuse and mislead me into being cautious of levels of flooring. Steps where there are no steps in changes of colours, missing steps where there are steps because of the lack of contrast. This is all new for me, and quite I feel quite shocked by it. How can I mentally feel so alert and normal still and be affected by these Alzheimer’s symptoms at the same time. I am grateful that my progress is still slow and is more physical than mental. I am fascinated by all this and would love to be able to have an MRI or scan or something that I can look at and see exactly what parts of my brain have ‘holes’ now. I loved the neuroscience part of my Psychology degree and if I had the energy I would really like to read current thinking on it!

I have been reading books again which is good. I took my kindle on holiday to Cuba, yes Cuba! and read about 6 books, lying in the shade on the beach in over 30 degrees heat!

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Going through airport check in can be a problem now as they try and hurry you but I can’t be hurried anymore, the more they chivy me along the more flustered I get. I should have learnt the word for dementia in Spanish before I went! Booking assistance is a bit hit and miss and not really available/understood in some countries. However, I love travelling still and don’t want to stop until I physically have too.

I loved Cuba and its people who have been shielded from a totally consumer driven lifestyle. They are friendly and if they stop to talk to you in the streets, they are not trying to sell you anything, they just want to chat. The county is lovely but like stepping back in time in parts with oxen ploughing fields, although there are tractors too. Cubans are proud of their country and who they are and I feel deservedly so. Their political history fascinates me and I realise that I hardly knew anything about it other than the words: Fidel Castro, Che Guevara, revolution and Communism, and that says very little. We had a private taxi and a guide who was so knowledgeable and spoke with an Eton accent! He laughed telling us he had no idea how when learning English in school he managed to get his posh accent! Us British are so embarrassingly poor at learning languages, why the heck don’t we take pride in pushing languages in schools?

Being in Cuba did not present a problem for me at all, I don’t think I mentioned it to anyone, I didn’t need to. I think the simplicity of these countries do not have visual difficulties of shiny floors, fancy patterns etc. To my mind we have become like magpies obsessively attracted to a complicated shiny world. Bring back simplicity in architecture, and design both inside and out I say!

I can still travel the world making memories of being in these places that sticks in my mind and live well with the brain disease Alzheimer’s.