“ I am more frightened by the thought of ending up in any type of care than I ever have been of my Dementia itself”
Quote -@ Christine Thelker Sept. 2020
There is a sense that those of us advocating are doing it for our ego’s, and for some that is in fact true, But for the large majority of us we advocate because we want real and tangible change. The above quote of mine speaks to why advocating is important.
We do not have grand ideas or fantasies about things, we are advocating for real change, the kind of change that impacts others with helpful change in their day to day lives.
“We don’t want the impossible we want the possible”@ christine Thelker 2020. This means we want everyone to stop talking about making change happen and actually produce change.
Many of us work tirelessly, ( well actually we are exhausted from it), if we were paid for all the work we do we would be living quite comfortably, or at least not struggling to stretch disability beyond what it can cover.
None the less we work with a variety of groups and organizations from Alzheimer’s/ Dementia groups to Research groups, Nationally and Internationally. And for most of us this means we are working with somewhere between 5 to 10 at any given time.
Many people think it’s just fun, the reality is I’ve never worked harder, it’s important work, there is so much research happening, we have to ensure that the changes that happen are actually impactful in a positive way.
For me personally I believe the way forward is “care until cure”, bring things that allow, provide and promote quality of life, until a cure can be found.
September was a very busy month with advocating, and my October calendar is already starting to be overflowing. People think I am at home doing nothing when in fact, even though I’ve struggled with many health challenges again, I am pushing to stay active in my advocating.
Yes it’s lovely to meet many amazing people globally through advocating, but it is not the glamorous life people perceive it to be, it’s hours and hours of preparing ( whilst living with a cognitive impairment – dementia).
It’s about trying to lift others up, to give them hope, to encourage them to keep living each day fully, too focus on all you are capable of not on what you cannot.
Most of us are not craving recognition, we are craving change, most of the advocates I know are amazing, kind, humble people, who like me believe that even though it tires us, even though we are frustrated to see that after 25 years very little if any change has happened, we must persist, because if we don’t then for sure nothing changes.