There are days when I feel I can no longer compete with organisational ‘experts’, with regards to what’s best for me and other people living with dementia.
That I can no longer stop others from deciding what us people living with dementia need, or want to fit their ‘brief’.
I get upset at how what I am saying, or my voice, is being blown away on a wind of ‘organisational’…I am sitting here trying to think what word to use but can’t quite get it.. constrictions, not fitting an organisational brief..
I am a strong advocate for people living with dementia to live with the positiveness of CAN DO. Of overcoming the fear of their diagnosis and trying to do as much as they are able and then, going beyond that. Having a say in what they want, what they will accept others doing for them, having a voice that is heard. Trying something new, revisiting something they used to do. Adapt what they want to do in a way that they achieve more than they thought they ever would.
The saying “There’s no such word as can’t” is so underrated.
At this point I had written a lot of why I was writing this and then realised that it was the wrong thing to do. So what I will write instead is what I feel is important for Society/Communities/Organisations to understand.
If you are living with any form of MCI or PLWD (Person/People Living With Dementia), it is import to keep going. Before diagnosis people had their own autonomy; do you want to? how do you want this to be? give us some ideas that you would accept… and such like. After diagnosis this should still be the norm for any organisation when they are providing for us. Most people working in organisations that provide some service for PWD have training. NVQ Level 2/3 in Dementia, Social Care degrees/Masters, or ongoing comprehensive in-house training. But, this training can never take the place of the voices of people living with dementia. Our actions, ideas or input should never put behind that of an organisation.
It is always worth reminding society that PLWD once had careers and backgrounds that may have surpassed anything that any dementia provider has done. All careers from shop assistant upwards are vital roles, but it seems that when someone is diagnosed everyone forgets what they are capable of, so if they are making a suggestion or offering to do something it is of no small consequence, because they may just have more knowledge than realised.
I really don’t want to be told what I cannot do, because I can try to do anything I like as long as it is legal and will not hinder any other process. I don’t necessarily always want to leave things to the ‘experts’ if I can do something myself.
My thoughts are to step away from a situation for my own wellbeing, but this isn’t about me this is about all people living with dementia having a REAL voice.