I have been reflecting on what I do in recent weeks.
I’m getting tired.
It might be just a month or two of something going on with my body that I don’t really understand.
Or it might be dementia.
Or just age and the combined effects of multiple conditions.
Or it might be the continuing frustration that we all face, day after day.
We do everything we can to inform and to influence, to persuade and to cajole, to get change.
Change of attitudes and awareness.
Change in services.
Change in support.
We volunteer our time and energies.
We use our experiences and our difficulties.
We constantly search for and create opportunities to meet those in a position, and paid, to create change.
And again and again we have to bounce back from another knock down, another unfulfilled promise, another closed door.
We have to be impervious to criticism that we do not represent people living with dementia.
We try not to be rude to those who accuse us of being misdiagnosed, because we can speak and act and make choices.
“You don’t look like you’ve got dementia.”
“You don’t look stupid.”
(as Tommy often quotes)
But on and going we remain.
Until we are worn out, ground down, and our disease gets the better of us.
Thankfully we get support from some professionals and from our friends.
We commiserate and we laugh it off.
We always say tomorrow is another day.
There is a worm in our heads and in our hearts, and it keeps wriggling and burrowing, and will not leave us alone.
We cannot rest and ignore it. We cannot excise it and throw it away. It just keeps on burrowing in.
So we start again next day.
Pick ourselves up, dust ourselves off and start all over again.
This is not melodramatic or self pitying.
It is not a cry for sympathy.
It is, though, a cry for understanding and for change.
Every time we meet an influential person who ‘gets’ us, and who says they will help and make something happen we get a rush. We score.
It’s what we live for. It’s what we spend our pensions for. It’s what we give our energies for.
Imagine swallowing that magic, wonderful pill and then…
No one gets back to you.
Just down and
And next day the sun rises and the worm wriggles and you start again.
I really do not understand why, or how it is possible that, so many professional, well educated, thoughtful people can ignore us. Or dismiss us.
Do we not breathe?
Do we not bleed?
Do we not feel?
Are we not entitled to health and social care as much as others?
Are we morally inferior and undeserving because our disease is invisible in our brains?
Hierarchies of our paid servants sit behind their walls.
Dante’s circles of hell made modern.
Each level ignoring the other, and hoping not to be demoted down into some other, less well paid state.
And there are so many circles, like a five dimensional galaxy, we cannot hope to navigate through them.
They ignore us. The people who pay them to look after us when we need care.
It is our hell.
I hope they read this. Because I want them all to understand and to feel compassion and to take action.
We are not asking for a lot.
We are asking for our lives, and for a little help to live them.
We will die. Our disease is terminal.
Is that a reason to refuse help?