I’m feeling distressed, wondering if the advocacy results I’m trying to achieve is worth it. Not so much worth the outcomes, for people with dementia, but worth it in light of the impact it has on my personal relationships, the time we spend together… Should I keep going, or give it up and focus on the time we have left? This is, I suppose, the million dollar question. But what to do, how long should we wait or keep going the way we are before the changes of dementia take over, or at least, make it too difficult or traumatic for us to have a good life together? I feel confused, I know things are changing, and that we will eventually run out of time, but when? If I give up my ‘work’ now, will the downhill slide be quicker, and start sooner?
So many questions, and the only one who can answer them is Mr Dementia. We’ve watched others on the same train trip, and each and every one is different, Some being taken over by Mr Dementia much sooner than others. I wonder how much intellectual and academic reserve I have left, how long it takes to run out, if continuing to study helps it last longer, keeps me functioning ok for longer, or if one day, it just stops dead. And the light switch goes off, my ability to paddle disappears, like my ever disappearing world? Sometimes the days of non sensical randomness and delight seem almost over, I know that, and it is devastating. I know my dear husband can see it happening, perhaps even more than I can.
After finding this on the Notes app of my iPad whilst flying home from Puerto Rico, I responded to it with this:
It seems this is a blog in progress, as I’ve just found this which I must have started it a few weeks ago when I had been feeling like all my energy and efforts were not making enough progress, or maybe I has just been feeling tired and burnt out. My dear husband and I have just spent five days with my Dementia Alliance International (DAI) colleagues and friends, and others we have now known for some time in the global dementia community attending ADI2014.
We both commented as we were getting ready to leave the hotel that we had not felt so supported and accepted since ADI2012 in London, and it is the power of doing truly meaningful and engaging activities, with like-minded people that offers us real support, not sitting around in a ‘support group’ discussing our troubles and ruminating over the negative parts of living with dementia.
Attending ADI2014 in Puerto Rico was even more fulfilling, as we were more ‘normal’ than last time, due in part to being part of a global organisation with an exhibition booth and all of giving presentations in part about living well with dementia.
It placed people with dementia well and truly back onto the stage of living well, refusing to die upon diagnosis, refusing to be sufferers or victims, and no longer will there be ‘about us, without us.’
We broke down barriers, smashed myths, and collectively reclaimed our rights, whilst at the same time empowering others to live well with dementia.
As with everything in life, there are many ups and downs, and my blog today definitely shows the highs and lows of living with dementia, and of trying to be an advocate for a group that is stigmatised, discriminated against and still very much marginalised and excluded.
One might have thought at ADI2014 we had almost reached the final tip of the mountain, and yet, now is when the real work begins…