Those four words - with a powerful message - are by Laura Bowley, who lost her mother to vascular dementia, and they appear on her website: Mindset Centre for Living with Dementia.
Here’s the story of dementia:“The long goodbye. Gone. Shadows of their former selves. Victims. Not there.” The tale of dementia is so pervasive and disabling that even those people who are just diagnosed with dementia become characters in this story as well. People around them start to say “goodbye.” Most people with dementia say “goodbye” to their lives and prepare for the worst.The end of this story? Loss of purpose in living, loss of self-confidence, increasing withdrawal and isolation, and ultimately, to untimely dependency on those around them. Caregivers become stressed out, angry, guilty and isolated. Saying “goodbye” too soon costs lives and money.But if we write a new story of dementia, we can write a new ending as well."
I found the website last night after clicking on a Facebook link to her blog's latest post: Why I’m not afraid of Alzheimer’s (and what I’m really afraid of) Take a few minutes to read the entire article to fully grasp the paradigm shift that the author is advocating.
The message is clear - we must focus on living with dementia just as we focus on living with diabetes or cancer or MS or any other devastating illness. Yes, by all means, let's keep searching for a cure, but meanwhile there are millions and millions of people who deserve to reach their fullest potential here and now.
Our constant fundraising and struggling to FIX people with dementia saps our energy and diverts our efforts at connecting with them just as they are.
That's what I love about Memory Cafe. A stranger walking into our Montpelier Memory Cafe would have trouble distinguishing who is a caregiver and who is a person with dementia, because everyone is participating and having a good time. No one is a "victim"or a "sufferer" or an "empty shell".
There is life to be lived, with or without dementia, and that's what Memory Cafe is all about. I look forward to seeing you there.