The story of life with dementia is being told by the people who are living it. Finally, we hear about this from the insiders. Not the physicians, nurses, aides or caregivers, we have heard their side. Not from the family, friends and loved ones, we know their stories. No, finally we hear about it from people like Norm MacNamara, Harry Urban, Kate Swaffer, Rick Phelps, the late Dr Richard Taylor and many others. Not afraid of the stigma, not concerned about what people will think, they bravely tell the story of day to day life with dementia. We now have a better understanding of what its like to hear the diagnosis and begin to make decisions for the time when they won't be able to make them anymore. We have listened to the horrors they live with daily. The night terrors, hallucinations, the losses they face as the disease takes its toll. And still through the heartbreak these brave people tell their stories. Their only goal is to help others understand what its like to go from a normal happy, healthy life to one riddled with fear of the future. Their brave fight to continue as long as possible working to bring awareness to a world that doesn't want to know!
Because of these people the world is becoming aware. More and more communities are joining the movement to be more inclusive of people with dementia. More programs are being started, more training and education is available and being utilized. Because a handful of people decided not to retreat to the shadows and instead brought their fight to the forefront we are finally learning how to better live with dementia. None of us know if or when this will be us, many of us working on dementia awareness today, will be the ones who need help in the future.
We all hope for a cure. We all want the research to continue. However we need to work on ways to help those already dealing with dementia. We need to make the world a safer, warmer more inclusive place.
Thank you to those brave souls who have blazed this trail. Thank to everyone working to make this vision a reality.
Keep on talking about it! Have the conversation with anyone and everyone. Let's make this work!